Det_716_Logo-3.jpgSubase_Logo-4.jpg

 

Subase Pearl Harbor Det 716 

Gold_Dalphins.jpg"We Served With Honor and Pride"silver_dolphin-3.jpg

Add this site to your favorites

 

From Paul's Wife's On Line Journal

Wednesday, January 29 2014 4:20 PM, CDT

Settled               

 By God's grace, settlement was reached.  Not surprisingly, State Farm came back to Pete with a slightly lower number after Pete had given him the figure with which we'd agreed.  Paul and I concurred that it was acceptable, so we have been wading through the waiting for the funds to be released to us, and with how to best manage it.
Through Pete we've made arrangements for the settlement, to keep it safe for the future, which is its primary purpose.  Tomorrow we will deal with another round of paperwork related to this, and that will take us one step closer to "finis" on this as well.  It has taken (is taking) a little longer than I had anticipated, but it has always been in God's hands, and this is his timing.
As I have said before, please continue to pray for our whole family.  This phase of the TBI journey is a hard one; it is invisible to most people, it's relationships and finding our way through the changes have happened and continue to happen as life goes on.  We are doing our best to follow God's leading as we work on the various issues that we see emerging in the family relationships.  It's hard, though, and we are tired, and it becomes easy to "fire up" at each other.  Your prayers, whenever God brings us to mind, are invaluable to covering us with his care and aid in this challenge we are walking as individuals and a family.   

                    

Monday, December 16 2013 10:21 PM, CDT

Pray for settlement               

Some time ago Paul and I were notified that a date for an arbitration hearing, for the suit we'd filed, had been set.  Subsequent to that, State Farm's lawyer contacted our lawyer and asked if we would consider mediation rather than arbitration.  We agreed to explore that option…and last week our lawyer called to say that they (State Farm Insurance) wanted a specific number, no mediation meeting.  Pete recommended a number and we went along with his suggestion.  Please pray that God's will be done in this, that he will handle it.  Depending on their response to the amount given, this could be settled soon, perhaps before the end of the year, or it will go into next year, to the arbitration hearing in March.

 

Tuesday, November 12 2013 10:39 PM, CDT

Yesterday Paul (and I) checked in with Dr. Walsh, to afford him a chance to see how the healing of Paul's ear had progressed since September when we'd seen him last.  It looked good; in fact, there was very little poking or prodding or examining of the ear.  Dr. Walsh did take one final series of pictures--something he'd done during almost every visit, especially during the reconstructive process.  That was the only way he could truly track over time how it had gone, and show medical students the progression.  He'd explained to us early on that because students only spend a few months in each area during their training having pictures is the best way to let them see a full case.

As we expected, this appointment was primarily an opportunity for us, and for Dr. Walsh, to acknowledge that we were bringing this doctor-patient relationship to a close.  Most certainly we are free and welcome to call on Dr. Walsh if there is a need to, or if we desire to pursue a prosthetic ear.

So, medically speaking, we are writing "finis" on this portion of the TBI journey.  There is no more that needs to be done, nothing more that we are planning to do in this area.

I'm struggling with writing that.  You see, though we are through with appointments and reconstruction and the prospect of a prosthetic ear--happily so, peacefully so--there is a level on which we will NEVER be done with this TBI journey.  A TBI leaves an indelible mark on the person to whom it happens, and it has a lasting impact on the person's family, and that's where the journey never really ends.  We will walk with this for the rest of this life, and it adds a layer to life's experiences that is hard to describe.  Paul is changed and must learn to manage differently than he did before the accident.  Because he's changed every relationship is altered…and that on top of the constant flux in relationships because children grow up, individuals keep changing as life continues to happen, or unfold…well, that's the "soft" side of TBI recovery as a family that we are going to be walking as long as we live.  At times that feels hugely overwhelming and intimidating!

As I bring this stage of the journey to a close with this update, which may well be the last one since it is less appropriate to share personal-interpersonal-relational-familial details so publicly, I still want to plead for your prayers as God prompts you.  Our family is walking through many rough moments right now, and we desperately need God's covering.  Pray for gentleness, for graciousness and forbearance as we engage with one another.  Pray that God's love would flow through us to each other for healing.  Pray we'd each individually and as a family resist the lies and the attacks of our enemy Satan, who is seeking to destroy us.

Dr. Walsh remarked as we were leaving that this--living with a TBI--can be harder on the family members than it is on the individual (though it's certainly hard for that one), and I have handled this all so well.  Comments like that are encouraging to me.  I am so tired; finding the strength and the energy to enter into battle every day is hard.  I know full well that it has been God's grace that has enabled me to cope as I have, and it will be God's grace that will continue to carry us.  He is in control, and he will accomplish his purposes.  His promise of faithfulness, of new mercies every day, is our desperate need.  And it's more than every day--it's over and over in the course of every day!  Pray it for us, please.

 

Friday, Sepember 19 2013 10:02 PM, CDT

Two years, one month, and one day.  That's how long it has been since Paul's accident.  I had hoped to write a "reflecting back" over the two years around that anniversary date, but as you can see, I didn't succeed in doing so!  I decided then to wait till after an appointment, and then didn't get to writing an update, so I wanted to wait till after the appointment we had with Dr. Zadroga on Monday.

Going back to the earlier appointment, with Dr. Walsh again...He was pleased with the healing that he could see, and pleased that Paul had found the other glasses.  He advised, however, that Paul put the bow back on his other glasses and wear those, as Paul's newer ones were slightly tight and were tending to leave an indent, which could lead to problems.  The other, older pair are a tad looser, so there's not that kind of pressure.  Paul was very happy to have the "go-ahead" to put the bow back on.  Only time will tell whether he stays with that pair or switches to the others eventually, once the skin around his ear has healed more and is better able to tolerate slightly tighter-fitting glasses.

During this appointment I reiterated what we've been hinting at for the past several weeks, ever since the surgery to remove the cartilage and most of the remaining outer ear:  Right now, we are inclined to no prosthetic ear.  Dr. Walsh is not surprised by that, and he confirmed that there is no time limit on when we could pursue a prosthetic.  If we decide to do it there would be some additional site preparation he would need to do, but that could be done whenever, if we find ourselves drawn in that direction.  He repeated that we have his number and may give him a call if ever we need to.

All that covered, Dr. Walsh asked that we check in with him again in two months, to let him see how the healing is progressing.  I rather think that that will be the last planned appointment with him, barring a change of mind about the prosthetic, as he's done all he can do at this point, in light of what we are deciding.  He is disappointed that this process has turned out this way, that it fell short of success when we'd begun with hopes that Paul would have a reasonable facsimile of an outer ear again.  It has been a struggle for us; I've said to Paul over and over that God knew it was going to turn out this way and still he let us go ahead, let us decide to pursue it.  It's been a heavier burden on me, as I was the one who made the final call back when we initiated the process, so I've had to grapple with the questions, "Did I make a mistake?  Did I fail to hear God's direction clearly?  Did I ignore Paul's wishes, or what-ifs?"  Paul's had to grapple with his frustration over the less-than-desirable consequences (chiefly having a section of rib removed to use for the foundation of the ear); now, he remarks, he is missing a rib AND doesn't have an ear...and that grates on me, as I still struggle with feeling culpable for wanting to try this.  It's rather an endless cycle!

In like manner, I anticipated that the appointment with Dr. Zadroga would bring closure to that aspect of this process--the dealing with the various infections Paul has been subject to since the beginning of the year.  As he'd ended the fifteen day course of anti-fungal medication and hadn't had any indication of trouble I expected there'd be nothing more that she would need to see him for, and sure enough, that was the verdict.  She examined the area and confirmed that the infection seemed to have been cleared by the removal of the cartilage, so not much was left for the medication to deal with, and that if there'd been anything left we'd have seen signs of infection by this time.

What all this boils down to is that, medically speaking, we are beginning to close this chapter.  We may call on Dr. Zadroga any time we have need; she mentioned that Paul may be more susceptible to infections around his left ear because the skin has been compromised due to the accident and the surgeries, but she expects that any infections he experiences now would be "standard, garden-variety" infections that would be easily treated with standard antibiotics.  She added that we could just as easily consult our family physician in that case!  I imagine that when we see Dr. Walsh again in early November we will similarly close the chapter with him--always having an open door to call him upon need, but we will be done with this.  It's been a long road, and a frustrating one, and we do have to manage the reality of failure and coping with a lost ear.  Thankfully it is simply a lost outer ear and Paul's hearing was not damaged in the accident.

Though the medical side of things is definitely winding down--no appointments till November!--Paul and our children and I continue to struggle with dealing with the "soft" effects of his TBI (which is something that will never really end).  Our family is finding its way through this, yet it is a hard journey, and we are tired.  I am tired, and worn, and hopeful, as I see the bits of progress and encouragement from day to day.  We have rough days, and better days, and good days, as we figure things out and keep going forward.  PLEASE keep praying for us!  Pray that we will keep our eyes on God, and watch him work on our behalf to heal and restore.

 

Wednesday, August 14 2013 5:38 PM, CDT

After Monday's appointment with Dr. Walsh we had a few more answers about various things. First off, any movement on a prosthetic ear, IF Paul decides for that, is on hold for six months or so, while this aspergillus infection is cleared up. Basically, Dr. Walsh said, they want to be sure that it is completely cleared before anything more is done.

I found it interesting that Dr. Walsh's first question to Paul was, "How do you feel about having no ear (or something to that effect)?" He fully gets that Paul is so ready to be done with surgeries and all. He's not pushing either way. I truly believe that this period of waiting and watching that the aspergillus is cleared will also be a time of testing out what the reality of no outer ear is like. It will give us time to determine whether proceeding on the prosthetic path is right, or if we should simply leave things as they are now.

Disappointingly for Paul, Dr. Walsh directed that until the next appointment with him on September 9 the left bow of his glasses has to stay OFF. The concern is that pressure could cause the delicate, healing skin to break down, and that is something we don't want. Happily, his newer glasses came to light when I was blitzing through our room the other day, so I am planning to remove that left bow and have them ready for him to wear. I just have to be sure I don't lose the bow before we have the all-clear to put it back on!

As far as the ear matter is concerned, this is about all that is going on. It is healing well. We're to continue the ointment till next week at least, when we will see Jane in clinic. Dr. Walsh and Dr. Zadroga will consult together and decide on the duration of the medication--if it needs to be extended for another two weeks. I expect we'll know that by Friday, if Dr. Zadroga decides to extend it.

On the "softer" side of the TBI recovery, I have been encouraged to see Paul making progress in adjusting to, or accepting, the changes that the TBI has wrought in him. He's finding ways to manage even as he works and hopes to continue recovering information he knows, pieces that are still stuck in a locked cabinet (to use a word picture). This eases the strain on me and on the family as a whole, yet we are still figuring out to interact with one another in a God-honoring, God-centered, helpful manner, in light of what IS. Please keep praying for us as we continue to navigate this journey, and for much wisdom for the doctors and for us as we make decisions about the prosthetic option.

 

Thursday, August 08 2013 10:18 PM, CDT

Well, here it is Thursday evening, and I am finally getting to a recap of Monday's appointments.

I was pleasantly surprised during the appointment with Jane that the stitches were ready to come out, and she attended to that. A few remain, but they are the sort that dissolve, so they didn't need to be removed. I felt and Jane concurred that Paul is healing well--the surgical site looked quite healthy. When I'd removed the dressing twenty-four hours after surgery it was clearly soon after surgery. I am not sure how exactly to describe it; "angry" isn't quite right, as that suggests infection, and there wasn't that sort of sense to it. Perhaps irritated is a closer fit. Anyway, much of that post-surgery appearance had faded by Monday and healthy healing was underway.

The second appointment was with Dr. Zadroga a few hours later (so we went home and returned to HCMC). She was pleased with how Paul's ear looked, and was equally pleased to tell us that after talking at some length with Dr. Walsh on Friday she agreed with him that the source of the aspergillus infection--the cartilage--had been completely removed when that cartilage was removed. With that in mind she is hopeful that a shorter, rather than a longer, course of treatment will suffice. She'd given Paul a 15-day prescription, and will decide early next week if it needs to be extended another couple weeks. She wants us to tell Dr. Walsh to give her a call after the appointment this coming Monday, to update her on how things are looking. At that point she will make a decision about whether or not to extend the medication for aspergillus.

Paul is to see her again in mid-September, and that will be after he's either been off the medication for two to three weeks, or only a handful of days, depending on what Dr. Zadroga decides about the duration of the medicinal treatment. I am hesitant to call this medication an antibiotic, as aspergillus is a yeast/fungus, not bacteria...so pardon the awkwardness of description If he needs to go in for blood work, to see if the aspergillus is still present or something, she'll let us know; if it's only this fifteen-day course, probably not.

The other thing that we discussed was proceeding with a prosthetic. As before, that is NOT decided as yet. Paul is not in favor of it, and I am endeavoring to remain non-committal about it, to leave the final choice in his hands. Dr. Zadroga was satisfied that Paul and I understand that until this aspergillus is cleared up proceeding with a prosthetic is on hold. She liked the idea of using a strap to hold Paul's glasses in place once the infection is cleared and he is able to put the bow back on his glasses, and pretty much voted for NOT having the prosthetic, managing without that outer ear. I laughed and said that maybe we would start keeping a list of votes for and against the prosthetic--half joking, half serious! I'm hoping that when we see Dr. Walsh on Monday I'll be able to ask a few more questions, which will be of assistance in making the decision--I hope that they give us a bit more clarity about exactly how the posts would be placed, which will help us know whether or not pursuing a prosthetic ear is a wise idea.

 

Friday, August 02 2013 10:19 PM, CDT

The newest bump

I am sighing, for this roller coaster has taken another drop. Yesterday Dr. Zadroga called to say that based on the preliminary findings from the lab (on the samples that Dr. Walsh sent to be cultured) the infection is not bacterial but fungal, and in that case the Bactrim that Dr. Walsh had started Paul on was likely not going to have any effect on the infection. She wanted to wait for more lab results (today) before deciding what to do, what medication to prescribe to attack the infection.

Today, as promised, Dr. Zadroga called again. She'd had more detailed results from the lab, and she'd gone down herself to view the cultures. It is a yeast infection, aspergillus, so she wanted to get Paul started on a different medication before the weekend. The Bactrim would not be effective, and she didn't want Paul to wait till Monday when we see her to start taking a medication that would aid in clearing this up. She is hopeful, along with Dr. Walsh, that with the cartilage removed 90% of the source of infection is likewise removed; the medication is intended to vanquish any tiny bits that might be hiding so they don't continue to cause problems.

After talking with us over the phone Dr. Zadroga planned to contact Dr. Walsh so the two of them could discuss the overall picture. Only Dr. Walsh would be able to answer some of her questions, and between them they would be better able to map out a treatment plan. It'll be over a week before we know exactly what these next weeks are going to involve, since Dr. Walsh is away next week. We will see Dr. Zadroga on Monday (as well as seeing Jane, Dr. Walsh's assistant) so we will likely have more information or understanding about this yeast infection. I guess I should become accustomed to calling it the aspergillus infection! Then I imagine we'll have a fuller picture of what this will look like after we see Dr. Walsh the following Monday, August 12th.

All in all, this will certainly delay any movement toward a prosthetic ear, as we will have to wait till this infection is cleared before anything is done in that direction. And, as I have mentioned already, the jury is still out on whether Paul will pursue that course.

Dr. Zadroga told us, too, of the common side effects of the medication she prescribed. The most "ugh"-producing for Paul was the visual disturbances (as she put it) that are likely--not loss of vision but shifts in seeing some colors (they might not look "normal"). He will start taking this either tonight or tomorrow (I picked up the prescription this afternoon). Please pray that this particular side effect would be minimal, as Paul struggles so with visual limitations and more changes, temporary though they'd be, would add to the stress.

Pray, too, that we will endure through this. How long the treatment course will last is unknown as of this moment, and that is a difficult weight on us.

 

Wednesday, July 31 2013 2:37 PM, CDT

Some elaboration

Shortly after posting last night's update, Paul and I were talking, and as a consequence, I want to flesh out a piece of the story, or update it more in light of what was said. This is shaping up to be one of those "more me-focused" updates.

So, to begin. I spoke of the possibility of a prosthetic ear, and over the last two or three entries had implied that Paul was amenable to the idea, though not particularly pleased with it. Well, last night he stated again that he is not thrilled with the notion of having metal posts drilled into his skull (and yes, holes would be drilled into the skull for the posts). Hearing that again propelled my thoughts in a slightly different direction--rather the same thoughts, but slightly different angles on things--and I want to try to unfold them here, to provide some detail for prayer, as we need it very much as we weigh the options and decide what to do now that we've removed the cartilage and closed the door to reconstruction.

In this whole ear reconstruction process (and in many other things) Paul has desired to do what pleases me. That is a lovely problem; he wants to decide to do what I want, and I want to decide to please him! That's a great way for a husband and wife to be with each other, both desiring to please the other. Back when we initiated the reconstruction process Paul yielded to my wishes and agreed to go along because I wanted to do this. As it progressed and especially as the MRSA infection happened he voiced more and more dismay that we'd even begun the process, and that began to more and more weigh on me. I felt that I was to blame for wanting to do this, it was my fault he now had (as he puts it) a "spear" poking from the inside where rib cartilage was removed for the foundation of the reconstructed ear, and that likewise it is my fault that he now has no outer ear since the cartilage was infected and had to be removed. He is NOT blaming me, let me make that quite clear! This is my perception based on his demeanor and occasional comments.

Both Monday and yesterday, then, I touched on this aspect of things, saying I feel that I am "to blame" though I know that I am not. I could not have known this outcome, and we truly did make the best decision possible with what we knew at the time we made the decision. Certainly Paul has not said, does not say, that I screwed up the decision. At the same time, I feel this, and now as we are faced with yet another significant choice--namely, whether to pursue a prosthetic ear or not--I am wrestling with these feelings pertaining to this decision. I see Paul ready to go along again if this is what I want, and I fear that if we do go this route and it turns out poorly there will be unstated fault found with me, as I was the main reason he said yes.

As I pondered this last night I found myself thinking something along these lines (I said something to this effect in my last update): "I need to try to step back and not press one way or the other on this. I will back Paul whatever he decides, whether that is to get the prosthetic ear, or to say no to it. I'll listen, but I will not urge either way, I'll simply let him think about it, see what it is like having no ear to rest glasses upon...." I admit, I do think going the route of a prosthetic ear makes good sense and would be aesthetically pleasing to those who look at Paul. And, based on who he is, that aspect will weigh heavily with him--to do what is pleasing to me.

In the end, I have come to the position that while I will listen and help Paul come to a decision I will NOT urge him to follow the path to a prosthetic ear. If he chooses that I will back him completely...and if he chooses to leave it "as is" I will back him completely. Bottom line, this time round, I will say little and leave it for Paul to decide. We have time for this to happen; there'll be a few weeks, at least, of healing before Dr. Walsh would do the preparatory work for a prosthetic, time in which Paul will have opportunity to experience the impact of no outer ear, and wrestle with his reluctance to have holes drilled into his skull (and having posts placed in them that could be driven into his brain if he were to fall and hit that ear), to decide what would be best.

Please pray for me as I walk this fine line between giving input and pushing my opinion, and for Paul as he works his way through to decide what HE wants in this, not weighting my wishes too heavily as he does so. Pray most of all that the decision will be the best for him, and for me--just the best all around.

 

Tuesday, July 30 2013 10:53 PM, CDT

Cartilage removal, done. Process, ongoing.

The surgery went well.
The cartilage is removed.

It was definitely the right decision, as Dr. Walsh found that there was infection throughout the cartilage. He said he kept going further, and kept finding infection. He suspects that it is the same MRSA infection Paul had before, and has directed that we see Dr. Zadroga again to confirm this and follow whatever treatment she determines is needed and best. He cultured the cartilage, and skin, and I forget what else, so she will have plenty to make clear what course of treatment to prescribe. In the meantime (till we see Dr. Zadroga) Paul is on a standard antibiotic, as there is infection present and Dr. Walsh wants to get a start on clearing it.

In addition to removing the cartilage Dr. Walsh removed the piece of reserve cartilage (per Paul's request, and since we are no longer pursuing ear reconstruction there was no reason to hang on to it) and all the lower earlobe that remained. He said that the small "bump" (I cannot recall the proper term he gave) at the front of the ear was left, and that was good; it'll hide part of the prosthetic if Paul chooses to do that. He didn't do as much preparing for a possible prosthetic because of the infection in the cartilage; his concern right now is to see that any lingering infection is cleared up and that the skin heals well. He believes it will, but he felt that waiting to do any preparation for a prosthetic was best.

He believes, also, that with the cartilage removed the source of infection has been removed, so he hopes and expects that it will heal nicely. He chose to "close up" the area, meaning that there will be no packing to do (a huge relief to me!), though keeping the incisions coated with ointment will be crucial. He cautioned that because of the lurking infection in the cartilage some of the skin may look purplish, and that should clear as the antibiotics do their work, and as it heals.

All things considered, today's surgery went well. All the bumps in the road had more to do with logistics than the procedure, and those bumps made for a long and wearying day. We arrived to check in at 10:15, with a scheduled surgery start time of 11:50. Paul actually went upstairs a little over an hour later, about 1:00; the case before him, in the OR, went longer than expected, which delayed Paul's surgery.

The children had come with us today, as the short notice about this surgery precluded making other arrangements for them. That was frustrating, as I knew it would be a very long day for them to be stuck in the hospital, but after checking with a couple people I simply couldn't come up with more options, so I chose to bring them along. I did my best to plan ahead, and it looked promising, but the reality was rather squabbly children and an easily exasperated mom, so the flow of the waiting time was not as smooth as I'd hoped it would be.

Next, it was about another hour after Paul went upstairs before he actually went into surgery. So that pushed the estimated completion of surgery out another hour, so we were looking at a possible discharge time somewhere between six and seven. That was all right; we had the constraint of leaving before it became dark, as the headlights on the minivan are non-functional....

But then, though Paul was out of surgery and into recovery at 5:35, there was not an open room till after 7:00! Probably closer to 7:30, and it was beginning to grow dusky by then, which was beginning to worry me and Paul.

By God's grace, though, we were able to wrap everything up there--he had some juice, no problems with that, dressed, received his medications and discharge instructions, and we made it down, to the van, out of the parking ramp and home by the skin of our teeth, before it was so dark we'd not have been able to safely drive home!

So, the surgery is done. The healing, and the next steps in the process are not. As indicated, we will be following up with Dr. Zadroga about the infection. We'll see Jane next week and Dr. Walsh the week after that (August 12, he specified), as this heals. Per Dr. Walsh's orders, Paul will again be wearing glasses without the left bow till we see him again; he wishes to be cautious and keep pressure off the area while it is healing. That was NOT a piece of news Paul wanted to hear! He'd like to find his newer pair of glasses and remove the bow on them, not on this particular pair...but that pair has been missing for months, and I have no idea where to look for them. Please pray that they'd come to light! And pray that we'll be able to get in an appointment with Dr. Zadroga this week, as Dr. Walsh has requested. I will be making the calls for these appointments tomorrow.

Perhaps the biggest ongoing prayer is what to do next, once Paul has healed from today's surgery. He is ready to just be done with surgeries, though he's also indicated that he is sort of willing to have the prosthetic ear, as it would make him look more normal. He's especially willing to do it if I want him to, to please me. He said that yesterday and I remarked that that almost puts too much pressure on me. I struggle already with the present situation--we decided to pursue ear reconstruction, and it has had a disappointing outcome! If we go ahead with a prosthetic ear and it ends up similarly disappointing...well, you see my dilemma. I believe that this period of waiting while he heals, and letting him experience what it would be like without an outer ear (to hang his glasses on, at the very least), may aid him in deciding what to do. I am trying to step back just a bit and trust Paul and time and circumstances to show us what is right and best. It's not easy to do that, so I appreciate any prayers about this for us!

 

Friday, July 29 2013 1:32 PM, CDT

Decision.  And DO.

As anticipated, today was decision day with Dr. Walsh. He reiterated that we've given this ample time to resolve, and agreed that until the MRSA infection occurred things had been going in the right direction. We've tried our best with everything that has been done since, and we simply have not been able to turn this around, back into the direction we'd been going. Rather, it has pushed us further and further in this different direction, and it has been hard to come to the decision to throw in the towel.

So, yes, we have reached that point. It is time to remove the cartilage and work toward a new healing--to prepare the site for a prosthetic ear, if that is the way we end up going. Dr. Walsh explained that he would want to do the removal of cartilage and the placing of posts (for the prosthetic ear) as two separate surgeries, in part because he wants to be sure that we get rid of any infection and have a clean surface for the prosthetic, should we elect that course.

As soon as we agreed that it is time--and Dr. Walsh stated that he was comfortable with this now, he doesn't feel that he is "pulling the trigger" too soon, we've tried long enough and have seen the indicators that continuing this path is not in Paul's or my best interest--Dr. Walsh told us that we could go ahead with surgery two weeks from tomorrow, or get in tomorrow (he will be away next week). My first inclination was to say, "Let's do tomorrow," and then I hesitated, and broke, unsure whether to stick with that first inclination or wait. This has become very emotionally draining for me. The need to change the packing day after day...the importance of doing so...the guilt I feel when I don't get to the packing change some days...finding that I'm caught in a pattern of doing the packing change every other day instead of every day as I'm supposed to...listening to Paul express frustration while I am doing the packing (and the mechanics of doing it are smooth, I don't have a problem with that)...more and more it was crushing me down. I asked if I would need to continue doing the packing if we waited; yes, Dr. Walsh said, that would be necessary. And I replied, "I don't think I can keep doing this packing for another week."

Enough said. I was breaking down in tears, and Dr. Walsh graciously gave us a few minutes to be alone, for me to calm and for us to talk together (and pray!) before we continued the conversation. I sorely needed Paul's arms, and he held me, and prayed, and I prayed, and by the time Dr. Walsh came back we were prepared to say, "We'll go with tomorrow if the logistics can be worked out." The main logistics at that moment were getting onto tomorrow's surgery schedule, and getting a pre-op physical done. Dr. Walsh started the ball rolling; he put Paul on as an urgent add to tomorrow's surgery schedule, and by God's grace we were able to be added. Then I asked if Paul could have his pre-op physical there, at HCMC, instead of trying to rush him in at our clinic. Again, by God's grace, he will have a pre-op physical there this afternoon, so the pieces have been falling into place.

Later this afternoon, before three, I have to call to confirm check-in time for tomorrow. Tentatively, it's nine o'clock, so I'd surmise a planned surgery time of 10:30 or 11:00. Same Day Surgery will know the schedule by mid-afternoon and will be able to give me more specific times.

The last logistic that needs to be worked out is oversight for the children. I'm anticipating being gone six to eight hours at least, and that's too long (in my mother's mind) to have them home alone. Please pray that this would be worked out!

This did come up very fast. I did not expect when we went to the appointment this morning that we'd be planning for surgery tomorrow! I am at peace about it; as Dr. Walsh said, as Paul's doctor, this is the right decision, but on a personal level he is sad about it. I agree; I know this is right, but I am disappointed too. We've been on this path for so long, we've been trying so hard to get the skin covering the cartilage, and it is DIFFICULT to let it go.

Dr. Walsh plans to remove the cartilage as well as what remains of Paul's outer left earlobe, and do some preliminary preparing the area for a possible prosthetic. Depending on how things look as he does the surgery, he may leave it open and I may have to do some packing as it heals from the inside out. He counseled not to dwell on that now, to wait and see, and take this one step at a time. Pray that Paul and I will do so, especially that I will bear up under this new direction. Both of us are weary in different ways, and I crumble far more quickly these days, under the swirl of choices and options and decisions. Pray we'd do what needs to be done today, for tomorrow, and for peace tonight as we prepare, and for all the last logistics to settle themselves.

 

Friday, July 26 2013 9:31 PM, CDT

On Monday Paul has an appointment with Dr. Walsh, the first time we'll have seen him in a few weeks (due to his schedule). Over these weeks Paul has had a non-MRSA infection arise, and just this past week all appearances suggest that there's still another infection, though no antibiotic was prescribed this time. Bottom line, in my thinking, is that this session with Dr. Walsh is likely to include deciding about surgery to remove the cartilage, and to consider the future course. Paul, just yesterday, indicated that he is ready to simply have the cartilage removed and do nothing more, just be done with this whole process. His estimation is that everything that has been done to "construct a new ear" has turned out poorly, not as anticipated. He repeatedly remarks that if he'd never started this process he'd still have his ribs intact. That can be frustrating for me, as we made the best decision we could based on what we knew and were told at the time, and truly, until February when the MRSA infection occurred, the overall process was going reasonably well. Yes, the rib cartilage had ossified, which altered Dr. Walsh's plans, but to that point and that aside, the surgeries had gone well, healing was happening. It's been since the MRSA infection that things have taken a definite downhill turn, and we knew, from various conversations with Dr. Walsh, that we would have to make a decision presently, as this state of affairs--the packing, and trying to encourage granulation and tissue formation over the cartilage, wrestling with infection--could not go on indefinitely. As I said, I expect that one decision that will be made on Monday is surgery to remove the cartilage. We've given this such a try for months; it is about time to "throw in the towel" and adjust our course. At this moment, I believe Paul wants to simply say, "Remove it, and we're done." I am not convinced that that is the wisest course; I feel that going the route of a prosthetic ear is better than simply removing the cartilage, perhaps removing the lower outer ear, and leaving it at that. I wish to inquire of Dr. Walsh if we could, at the same time he performs the surgery to remove the cartilage, have the posts that a prosthetic ear would require placed, and then decide whether to go further with that or not. I see advantage to doing both in one surgery rather than removing the cartilage and some time later having Paul change his mind, want the prosthetic, and need another surgery to position the posts. Based on what I remember from the consultation with the prosthetic doctor, there'd be a three-month period of healing between the surgery and the actual crafting of the prosthetic. I feel that during that time Paul would recognize the drawbacks to not having the outer ear, so he'd be more willing to continue to go down the route of a prosthetic. If he then had to have another surgery I suspect he'd resist more. But if he had the posts positioned and then decided against the prosthetic...would those posts be a problem? That's a question I have for Dr. Walsh. Another point that I believe Dr. Walsh could address is something Paul alluded to the other day: He remarked that if he had these metal posts put in they'd be drilled into his skull, and then if he had another fall the metal posts would drive into his brain (causing more damage, was the implication). I don't think the posts would be drilled into the skull, but I'm not sure about that, hence the desire to ask Dr. Walsh. We might have to contact the prosthetic doctor, but I'll start with Dr. Walsh! Please pray for us, and for this appointment Monday morning. Both Paul and I are weary, in different ways. This has been a long, trying, and now disappointing process, as we have come so far and now are blocked from continuing the course we originally set, and unsure we can bear more effort. We've come to a place where we expect what we attempt to fail, and that makes it hard to be willing to go forward in another direction.

 

Sunday, July 13 2013 10:56 PM, CDT

A positive tidbit

Or four.

At Paul's appointment with Jane yesterday she said his ear looked better--still slightly red, but much better. And she was able to tell us that it is NOT a MRSA infection, just a standard staph infection so the Bactrim will be effective. Those were encouraging pieces of news. Further, Jane said that we would not need to come in until next week. I had been thinking that we'd be on a two or three times weekly routine while we got this infection cleared up, so this was also encouraging. She stressed, however, that it's very important to change the packing EVERY day, as she suspects that it's when we don't that the infection is triggered. So, I will have to be much more diligent to tend to that packing change over these next two or three weeks. And, in light of how it looked yesterday, and considering Dr. Walsh's schedule, Jane advised that we simply stick with the appointment on the 29th with him. She is keeping him informed, and this will give us time to clear the infection, and then by the time we see him we will be at a good place to make decisions for the future course, without it being a lot sooner than we'd originally planned. It is also encouraging to me that Paul is accepting of the prospect of a prosthetic ear, even if he's not thrilled about it. Whether we will that route or not is still unsettled, though it appears to be the path that we are being directed toward. Please continue to pray for wisdom as we figure this out.

 

Tuesday, July 09 2013 10:26 PM, CDT

More spanners in the works

Or "more monkey wrenches in the works", whichever you prefer. 

When I called to cancel Monday's appointment and asked to reschedule I ended up going through several hoops...so it seemed. It was easy to get an appointment set for today with Jane, to have the in-clinic check on Paul's ear. Rescheduling with Dr. Walsh, however, required a call from the clinic to find out exactly what we needed so it could be worked out, and then another call to give me the new appointment that was set. 

Due to his schedule, and because Paul already had an appointment set for July 29th (to see Dr. Zadroga in Infectious Disease for another follow-up), the scheduler set Paul's appointment with Dr. Walsh to be back-to-back with that appointment. I had hoped for something sooner; as I mentioned before, I was feeling so anxious to have the discussion with Dr. Walsh continue, so we could come to a decision about the ear reconstruction proceeding, what we would do next. But this is how it worked out, so again I am trusting that God's hand is over it, and this is best, even if I cannot see it yet. 

So. This was all settled, and Paul was discharged and home by early afternoon. Sometime during the afternoon he remarked about how he'd scratched at his ear, and how he'd noticed something...I can't remember exactly what he said now. When I looked at his ear...oh, dear. It did NOT look good--kind of crusted, scabbed, whatever you would like to say, and sensitive to the touch. Looking back now, I believe it had been growing more sensitive for a couple days, and became very noticeable yesterday. 

Just from the look of it, I wondered if there was infection, and I was very wary of touching it. I had had in mind to pack it after he came home from the hospital...I had removed the packing the day before while we were there, and that had been slightly painful! But I didn't have the supplies with me, and didn't inquire as to if I could get them, or if they'd do it. Anyway, when I looked at it yesterday I realized that the space through which I would normally thread the packing was crusted over, so I doubted I would even be able to do it. And I knew that we were seeing Jane this morning, so she'd be able to clean it out, and would do a better job than I! 

Almost the instant Jane looked at Paul's ear, before even starting to clean it, she speculated "infection", and sure enough, she cleaned out green pus. Because Paul had a MRSA infection before she took a culture to ascertain what exactly we are dealing with, and she started him on a ten-day course of Bactrim. She stressed that it's important not to skip a single day of changing the packing, and if I can do it twice a day that would be even better! She said we caught this early, so we'll be able to clear it up, probably within these three weeks before we see Dr. Walsh. 

Where does this leave us? I feel that things are conspiring to push us to make a decision sooner than we'd intended, although I realize that with when we will see Dr. Walsh again we are coming quite near to the mid-August date that we'd agreed was suitable for making a decision. Even more, this newest development suggests that we are being pushed to decide for a prosthetic ear. Jane agreed with that impression, and she was the one who pointed out that the time frame isn't being moved forward all that much. 

Another factor is that I have begun to recognize more and more that I am stressed about to my limit. Paul is very ready to be done with all these appointments and things, as I have mentioned, and now I am seeing more and more that I cannot go much longer with this turmoil. I am worn down, and it's becoming harder to press on, to do the packing changes, to encourage Paul, to be matter-of-fact as we feel our way through this. I told Jane that I will be able to handle the packing changes for two or three more weeks, as long as I know that it's a finite amount of time. So it's all these pieces coming together that seem to make clear the path we are going to follow. 

Please pray that we will find confirmation to this direction, through the process of packing and clinic checks, and talking with Dr. Walsh. Pray that the infection will clear quickly, helped by both the antibiotic and by the packing changes. Pray that it's NOT another MRSA infection that requires a stronger antibiotic (I had no call to that effect today, so I'm hoping that no news is good news on this score). Pray for my endurance and for Paul's handling of this added frustration, that he'd rest in God's sovereignty.

 

Sunday, July 07 2013 11:06 PM, CDT

Monkey wrench circumstance

Well, the appointment that was on the schedule for tomorrow, with Dr. Walsh, has been cancelled due to a monkey wrench of a circumstance: Today, as we started clearing the table after lunch, Paul experienced some chest discomfort, more intense than what he'd observed the previous day as he'd biked to and from work. My immediate inquiry was, "Heart?" based on where he indicated the pain was centered--and he declared that it was not so much pain as discomfort, unfamiliar. Any chest pain rattles me, as my dad had heart disease and died before I was ten; though I don't remember many details there is burned into me anxiety from the times daddy suffered a heart attack and was hospitalized. 

Because it was more intense today, and because chest pain makes me nervous, Paul agreed it would be wise to have it checked out, so off to HCMC emergency we went. 

Before I go further, let me say that it appears NOT to be heart related! The EKG he had was normal, and an enzyme that they look for in the blood, which appears when there has been damage to the heart muscle, was not present. The ER doctor told me that when someone comes in with chest pain they start by ruling out the life-threatening possibilities, and then seek to pinpoint what the problem is. 

Though it did not appear to be heart-related, the decision was that Paul would be admitted overnight so they could monitor his heart and check those enzyme levels a couple more times, and look at other possibilities. One of those is that it's related to dehydration; his creatine (not sure of the spelling there) was slightly higher than normal, suggesting that his kidneys might not be filtering as well as they ought, or that he's somewhat dehydrated. 

It's almost needless to say that Paul was not pleased with this turn of events. These two years of many doctors' appointments, and medical issues, have grown increasingly frustrating for him, and he would like very much to simply be done with all this! He also bemoaned that this turn of affairs meant he couldn't do some things he'd intended to do today, or meet with a friend tomorrow morning as planned. (It was not the way we expected to spend our Sunday afternoon!) 

At present, as things stood, after the night of monitoring and more tests and such, the expectation is that Paul will be discharged from the Rapid Treatment Unit (where he was admitted from the ER) tomorrow later morning or early afternoon. Most likely he'll be instructed to follow up with his primary care physician, and they'll give him recommended tests and such to take to that doctor. 

Most immediately, this scuttled the appointment for tomorrow morning. I asked about it, wondering if we'd be able to keep that appointment somehow. No, probably not, was the answer. Paul could not be in-patient and out-patient at the same time, and it was doubtful that all the tests would be finished in time for him to be discharged to make a 9:00 clinic appointment.

It is absolutely unclear to me at this point just how this fits into the big picture. The discussion that Paul and I have had on an ongoing basis since the session with the prosthetic people had me desiring to continue the dialogue with Dr. Walsh, to keep putting the pieces and our feelings about them out and listen to what he had to say about things, what he would advise. It felt so crucial, or urgent, to have that happen tomorrow, since this is a weight on us, this deciding what is best to do about the whole ear issue. Now we will have to wait at least a week, maybe longer, before we will see Dr. Walsh and continue this conversation. I keep coming back to the reality that God is fully in charge of this, and even though I don't see why he has orchestrated it so we must hold off on the talking with Dr. Walsh, I must trust that this is for the best. 

I touched base with Dr. Walsh once I was home, to let him know that we would have to cancel tomorrow's appointment and why, and to ask how to handle this. I felt that it would still be wise to get into clinic this week, to have them have a look at Paul's ear and make sure that things are still looking right. I am not trained so I may not pick up on problems, so it's a relief to go in weekly to have trained eyes keeping tabs on things! That's one thing on tomorrow's agenda, to call the clinic and cancel Paul's nine o'clock appointment and reschedule it for as soon as possible in the week, hopefully Tuesday or Wednesday. And I will have to see when we will be able to see Dr. Walsh, to get that on the calendar! 

Please pray that all goes well with Paul tonight, that the right tests are ordered and the results give us direction as to what the problem is and how best to treat it. Pray that I'll be able to get the appointments set as needed, and that both Paul and I will rest in the confidence that our Father and Great Physician is completely in control of this, even this additional bump in the road, and it WILL all work out well. 

As a last note, I am so proud of our youngsters, particularly our daughter, who held down the fort at home for the five or so hours we were gone. She did her best to finish clearing away lunch, and looked after her brother, and even handled feeding them supper (she baked a frozen pizza for them). Oh, and she gave Samuel's kitten a bath as a means to teach him to stay out of the bathtub. I'm not sure that was a truly necessary activity, but ... I wasn't here to advise against it. I could have done without her repeated calls to know WHEN ARE YOU COMING HOME?, especially after I said I would be home as soon as I could be, but overall Emily and Samuel handled the hours well, and that made it easier for me to be with Paul till definite decisions were made and I was free to leave the hospital and return home.

 

Friday, July 05 2013 4:21 PM, CDT

Time frame adjustment?

That is the question that is brewing. 

On Tuesday Paul and I met with the prosthetic people.  Basically, their counsel was that Paul would be well pleased with a prosthetic, if that was the direction we ended taking.  Dr. Duncan said, in answer to Paul's comment, that a doctor usually won't remove healthy tissue--as the remaining ear structure was--but will try to save it and build reconstruction around it, because Paul had said that he wished Dr. Walsh had just removed the rest of his ear at the time instead of taking rib cartilage and all. 

We didn't commit then to anything, pending our next appointment with Dr. Walsh.  I am inclined to do this, as it seems it would give much more normalcy to his appearance and give him a good rest for the left bow of his glasses.  But that is my opinion, and it's not the only thing, or even the most important thing, to consider. 

As of today Paul has expressed much more definitely his opinion about all of this.  It boils down to he'd like to simply be DONE with all this--the packing, and changing the packing, and any further surgeries.  He wants to just stop the packing and let it be, let his body handle it, and be through with doctor appointments.  He says that everything that he has done these two years--the ear reconstruction, the eye surgery--has been positively presented but has not turned out as well as was hoped or intended.  He is, therefore, understandably skeptical about the outcome of any additional surgery, especially something that would put little metal posts in his head (for the prosthetic ear to attach to, via magnets). 

After listening to him and talking a bit I remarked that as I understood it, simply stopping the packing would not be an option.  I don't fully understand why, but Dr. Walsh made a point of stressing that cartilage cannot be left exposed.  So I doubt that he'd approve this tactic; I expect that there would have to be some surgery, most likely removing the implanted cartilage and grafting skin over the area.  I kept saying that I didn't know, this was what I had understood, and it'd be best to wait till we see Dr. Walsh on Monday and talk to him about it.  Then I said that perhaps we will decide to move the time frame forward instead of waiting till mid-August. 

That is where things are at this moment.  As a courtesy I called Dr. Walsh to give him a heads-up that we might need a little extra time for discussion on Monday, so as not to catch him completely by surprise, and mentioned that maybe we'd end up adjusting the time table in light of Paul's thoughts. 

Please pray for Paul and for me as we look toward Monday.  Pray we'll listen well and share honestly (both as he and I talk to each other, and on Monday with Dr. Walsh), and heed what Dr. Walsh says.  Pray that the various circumstances will come together for us and we'd agree on the best course to take with this. 

I would appreciate prayer for the working out of logistics for Monday morning, as we have two things scheduled for the same time, in two different locations, and I have to find a way to handle that dilemma!

 

Friday, June 28 2013 5:30 PM, CDT

Paul and I had a longer than usual time with Dr. Walsh on Tuesday, as we talked some about a tentative timeline. Over the last two or three weeks Dr. Walsh has reiterated that "this" -- the daily packing changes and weekly clinic visits -- will NOT be our new normal. So he's introduced the topic repeatedly, and makes it clear that he is thinking about Paul's case between times when we see him. His part in this is to provide the medical and technical knowledge he has, to help us understand what is happening and what our options are. At the same time we need to be asking questions and letting him know what we think and feel, what we wonder, what we'd like, because we have to work together to figure this out. There's no textbook guideline for us to follow; we are feeling it out as we go! 

Politely but persistently, Dr. Walsh pushed me for a definite date in answer to the question, "How long do we keep doing what we're doing?" He explained, first, that we can continue this as long as it is safe for Paul, meaning that there is no indication of infection recurring. Should that happen we would have to take some sort of action. But he will not let us go on like this indefinitely. The question underlying the question is, "How long do we wait before we 'throw in the towel'? When do we cut our losses and do something different?" 

In Dr. Walsh's estimation, the healing of Paul's ear has stalled. It's true that granulation may be slow, and tissue from the granulation likewise slow, but he is not seeing much evidence of change in the amount of granulation, or a decrease in the area of exposed cartilage. That's what suggests to him we've stalled, this degree of healing may be as good as we're going to get, and that pushes us to consider what to do, because sooner or later we will have to decide what to do. 

A couple weeks earlier, during a similar conversation with Dr. Walsh, I had pointed to mid-August as a tentative date by which we'd make decisions. On Tuesday I responded first by remarking that emotionally I was near ready to say I was done, it was time to move. Dr. Walsh replied that that was a valid issue. For me, however, the emotional aspect is not the driving force. Yes, I'm tired, this has been a long road and it's not over yet (it will never be fully over), but to decide what to do and when based primarily on my emotional state--nope. Therefore, I held to the mid-August date. 

This felt right to all of us. It's the two-year anniversary of Paul's accident. It's far enough away that we have a decent chunk of time to see what happens with granulation and skin formation, yet not too far into the future that we're stuck in this mode of daily packing changes at home/weekly clinic visits for an inordinately long time. Between now and then Paul will have another check-in with Dr. Zadroga, and we will have a consultation with Prosthetics Plus to discuss doing an ear prosthesis. That consultation is Tuesday, July second! We'll be thinking, talking, gathering information, so we'll be ready to make a decision when the time comes. 

My sense is that as we continue to have the various conversations--with Dr. Walsh, and Dr. Zadroga, and Dr. Duncan at Prosthetics Plus--we will find ourselves reaching a decision naturally and gradually, so that mid-August date will be more of a confirmation of the decision we've come to over time. 

These next six weeks or so will be a time of talking and gathering information. And waiting to see what happens with the granulation. That is perhaps what will most likely drive our decision. If granulation IS occurring, even if it's very slow, we might well continue this course past mid-August, as long as it is safe for Paul*. If the degree of granulation and the corresponding amount of exposed cartilage remains where it is mid-August will move us in one direction or another. Whether that is simply removing the cartilage that Dr. Walsh carved and positioned, or removing the cartilage and the remaining outer ear and placing a skin graft over the area, or pursuing a prosthetic ear...well, those are a few options that have been put forth as possibilities. A huge prayer need is for wisdom as we consider all the details we have in hand and seek to decide what would be best for Paul. 

* As I said earlier, the instant "staying the course" is not safe for Paul--for instance, if infection recurs--we'd be taking whatever action is warranted, per Dr. Walsh!

 

Monday, June 17 2013 1:44 PM, CDT

Dry packing till Thursday. An extra appointment with Jane on Thursday. That was the end result of today's appointment. 

Thankfully, Jane was not upset that I hadn't done the packing change every day, as expected. She wasn't thrilled with how the area looked--more irritated than before, she said, and she couldn't determine if it was vaseline-softened scabbing or what. She explained that using vaseline to coat it, but then leaving the packing unchanged kept the air out and could set off another round of infection. So, to stave that turn of events off, she decided to do dry packing till Thursday when we'll see her again. It'll be crucial for me to DO the packing change EVERY DAY, to keep it clean and progressing toward full healing. 

I did explain that my failure was not because I couldn't do the changing, it was more due to the activities of life consuming me. I would be busy with the children, doing school, or some other home tasks, and suddenly Paul would be leaving for work and there wouldn't be time to take care of the packing. My aim this week will be to consciously allot time for the packing change in the morning, and make sure I give it high priority. Please pray that for me, and pray that the healing continue, and that we'd succeed in staving off any infection taking hold.

 

Saturday, June 15 2013 4:58 PM, CDT

The days of this week have slipped by without my getting to an update after Monday's appointment. I again did the packing with Jane observing, and it went smoothly. At the end of the appointment she supplied me with all I'd need to do the packing change each day, as we'd agreed I would do. 

That was about the only part of Monday's appointment that went as expected. We saw Dr. Walsh as well, and he tossed out more things to consider. He greeted us with, "I've been thinking about your case," and went on to say this state of affairs--the packing, the granulation, all that we've been coping with for months--will not be allowed to go on indefinitely. At some point we will have to make a decision as to what to do, whether that's keep waiting and doing all that is possible to completely resolve the infection and exposed cartilage. Where that point is, when we will have reached the point where doing what we're doing isn't the best path, is unknown. This is uncharted territory for Dr. Walsh, so he is relying on us to keep telling him what we think, and we come up with a plan together. 

In the middle of this conversation Dr. Walsh stated that he no longer knows exactly what he would do in the next surgery. He's concerned that the skin is so thin around Paul's ear that the blood flow to it following surgery might not survive. In other words, he would be devising a new plan on the spot, as he does surgery, and its success is much less certain. 

He confirmed that granulation IS occurring, albeit very slowly, and that the skin across the center of the exposed cartilage is healthy. He's pleased that there is blood when packing changes are done, backwards as that sounds; it indicates the blood flow is good so the skin will survive. However, he said that there are three areas of exposed cartilage, not two as I'd understood, which is where the granulation is occurring. Skin is not yet forming there, as I understand it, and we continue to work to foster healing and granulation and skin forming--the purpose behind the packing and ointment that we're doing. How long to continue this course is a key consideration. I implied that I would continue as we are doing into August, as we reach the second anniversary of Paul's accident. At that point, depending on how the granulation and tissue formation is going, and what Dr. Walsh thinks about what he would do in the next surgery, we'll decide...and that led to the next piece, which was Dr. Walsh saying that he wanted us to talk to the prosthetic people to get more information about that option, as it may well be the best route to go! 

He called them himself and requested that they call us to set up a consultation, and made sure to give us the number in case they didn't get hold of us in a timely manner. As best I recall, Dr. Duncan called Wednesday afternoon asking for Paul, who was at work; as I took the message and realized who she was I handled the matter and have scheduled a consultation for July 2. 

At this point I am shifting gears slightly, to my personal struggling as we continue to walk this TBI road. It is hard, because this is primarily a place to share how Paul is doing, yet the impact on me and on our family is huge. We need prayer, yet I must be careful in what I say in order not to cross the line of propriety in what is said. I want to be honest and share what is helpful as you pray while keeping confidence. So this is me wrestling through some of my feelings and frustrations...and it seems that the frustrations are winning right now. I am tired, and it's easy to let things slip, very easy to explode when I am bombarded with demands...and oh, those demands are many! Often I feel that our family is not pulling together as well as we could, that we are not looking for how to serve one another in the middle of daily life. I find myself sinking with inertia, and preferring to focus my attention on anything that doesn't involve other people because those things don't demand as much from me. I look at the way things go around the house and perceive that we're all more interested in doing what we want to do than in doing what needs to be done, and the flare-up is so fast and so volatile when what we want doesn't happen. 

I know that at root, for me, it is a consequence of being drained, so depleted from the strain of these last two years. There are so many tensions and I am caught in the middle of so much. Before the accident, simply by virtue of my position in the family, a lot of practical responsibility fell to me, and that has been amplified since the accident. I cannot clearly express all that that means; it's just "out there" and overwhelming, and I am desperately seeking God's guidance and strength to keep plugging away, to not give up...and believe me, I am tempted sometimes. Thankfully, God is not letting me look that way, as I know full well giving up is not an option! 

Most immediately, I am frustrated with my failure to change the packing each day. I've only managed to do so twice since Monday, which is a far cry from the goal of daily changing. The process itself is going well, when I get to it, so it's the falling so short of the goal that weighs on me. Then I easily slip into feeling that I fail and fall short in almost every other area of life--relating to Paul and to our children, keeping the house tidy and livable, preparing meals, seeing to the laundry, washing dishes, shopping, guiding the children through their studies, paying bills, ordering next year's curriculum, planning the activities of each day, and on and on. And I vent, often inappropriately, and do damage to what I so desire to protect and nurture. 

So, how shall I draw this to a close? Pray for me, that I would find my way to rest in the midst of the chaos of life. Pray that I would be able to do the packing change daily (we're near the end of this first week, we'll see Jane on Monday, and my desire is after I confess I didn't do it daily I'll have a fresh start and support to succeed better next week). Pray that the consultation with Dr. Duncan would give us helpful information as we and Dr. Walsh feel our way through what to do when. Pray for the granulation to continue, even to speed up, and for the tissue and blood flow and all to be more than adequate for whatever Dr. Walsh would do in the next phase of the reconstructive process. Pray we'd make wise decisions and perceive rightly when to make decisions. Lastly, and perhaps most importantly, pray peace over our family as we find our way together through this.

 

Thursday, May 30 2013 3:47 PM, CDT

Success!

No blunders, no difficulties--I was able to do the packing this morning! From start to finish, from swashing it out with saline, to "painting" it with beta dine, to actually inserting the packing. Jane cut the length of packing tape for me, and reviewed how she does it, and she did tweak the tape a bit after I successfully inserted it, before I packed the rest of the tape into the cavity. You see, to make it easier, Jane folds the end of the tape and then unfolds it as much as she can. 

I was SO relieved to have this go so smoothly! Thanks to all of you who prayed! I will again do the packing, start to finish, on Monday. If that goes as smoothly I imagine that we will discuss with Dr. Walsh how often to come into clinic for the packing (I'm guessing we'll begin at once a week), AND how often he'll want me to change the packing when I am doing it at home. Back when we first considered me doing the packing he'd said he would want it done perhaps twice a day! That was when the infection was pronounced and there was a lot of pus and stuff to clear out so the antibiotic could help conquer the infection, so it could heal. Now that the infection is gone and there is tissue granulation occurring I'm not sure that we'd need to do it that often. It's usually been every other day, and a bit longer over weekends. I'm guessing we'd stick with that schedule, or possibly go to daily repacking. 

On a completely different note, Paul was called for a second, briefer deposition this morning. As before, I don't give a lot of details about this, so I mention it mainly to ask your continued prayers for this matter as it goes forward, that God's will be done in it. I have been rather surprised that I have not been called for a deposition (as yet) and I am repeatedly handing it back over to God to orchestrate if it's needed.

 

Tuesday, May 28 2013 4:11 PM, CDT

Please pray for me

During Paul's appointment this morning I agreed to give packing a try...Thursday. 

I am simultaneously apprehensive and hopefully willing about this. I say "hopefully willing" because I want to do this, and successfully, yet I am apprehensive that it will end as a blundering mess. 

So please pray for me to take courage on Thursday, and let God's hands guide mine as I make this first attempt to do something that I have been invited to and shied away from doing. Jane will coach me, and she pointed out that I could also try it under her guidance on Monday, which is the next appointment after Thursday's. 

I will update again after that appointment on Thursday.

 

Monday, May 20 2013 2:51 PM, CDT

"Me-Packing" matter, take (some number)

I think this is about take three or four on the "me doing the packing" debate, but I am not quite sure, and it's not crucial enough to page back and figure out. What is important is the asking for prayer about this. 

Before we headed out for the two appointments this morning (one with Dr. Zadroga, the other for packing) Paul inquired if I was concerned I wouldn't be able to do the packing. That is part of the puzzle; I am uncertain that I will be successful. Far more, however, is that I fear that I would be trying, and Paul would be desiring to encourage and help through his words, and I would become overwhelmed so I would pause (if not stop completely), and then he'd become upset because I stopped, and then I'd become upset and defensive and throw up my hands and really give up, and we'd end up frustrated and angry, and hurt. And I don't want to do that to either one of us. 

That was the first part of my answer; I also reminded Paul that when we'd discussed this before, with Dr. Walsh, Dr. Walsh's answer was in part that if I did do the packing he would order Paul to abide by the "Walsh rule", which is that Paul has to be quiet while I am doing the packing. We all laughed a little at that, albeit with an understanding of how serious the statement was. 

At that time, because I was very reluctant to attempt the packing, we dropped the issue. Dr. Walsh stressed that they could most certainly do the packing in clinic, that we could pop in and out for that, and if at any time I wanted to try I most certainly could. Having three appointments a week, mostly, has worn on Paul; he goes, as he understands that this is the process, but it is tedious and he wishes he didn't have to use chunks of time for this! 

When we were in for the packing today I related this conversation to Jane. I want to be willing to do things, yet I am wary of trying and having it turn out a disaster--whether that is a failure on my part to successfully do the packing or a spiral-down as outline above. That it would remove a layer of stress for Paul in particular has kept picking at me, pressing me to be willing to try. And yes, I admit, I have not faced it squarely for these last several weeks, since we let my doing it drop and set up the appointments to go in for the packing. I appreciated the relief from that tension, but it didn't completely go away, and now it's back at the fore. 

Jane's response has shifted my perspective slightly, and in a helpful way. She remarked that I could do the packing there, in clinic, under their supervision, until I felt confident to do it on my own at home. I had expected that I'd do it there once, and then would be handed the responsibility to manage alone for the most part, no matter how I felt about my ability to handle it. The idea that I could try there, with Jane to instruct me and, yes, to take over if I botched it badly, or had tried two or three times without success, and the added thought that we could-- and probably should--do a combination of me doing the packing at home most of the time, with a weekly check-in at the clinic so Dr. Walsh could monitor the progress because I don't have the equipment or the expertise to do that ... well, that was sort of a jolt to my thinking. 

There's another reason this is more of a front-burner matter again: Dr. Zadroga said that this packing is THE most crucial piece toward full healing. She remarked that ears heal slowly, because they are cartilage, and reconstructed ears heal even more slowly because they are reconstructed. Dr. Walsh had indicated the healing will take time, and he hasn't yet given any kind of time frame for when the healing will be complete, when we will resume the reconstruction process. So, Dr. Zadroga, said, the packing is essential to keeping the site clean and providing a sterile base for the healing. In other words, the packing must continue...which means the frequent clinic visits must continue, unless I am able to handle doing the packing, at least part of the time. 

As a result, my biggest plea here is that you would pray for me, and for Paul, about this. Pray I would be willing to try the packing under Jane's guidance in clinic (I considered doing so today but didn't jump on the chance), perhaps on Wednesday when Paul goes for the next packing. Pray that Paul will give me grace to try without speaking either encouragement or complaint while I am trying (I wouldn't be so bothered by encouragement after the fact; I might not appreciate complaint at any point!), and grace to wimp out! Since this packing is likely to go for another month or whatever, depending on how quickly the remaining exposed cartilage covers over, it would ease stress for Paul if I could do some of the packing. So that is another aspect: It may ease Paul's stress, but if it significantly increases mine, is that truly helpful to our family? And, honestly, I am stressed some because he is stressed, so it could well be that giving it a try will ease THAT stress for both of us. 

I think I'd better stop there, I can see this becoming quite a cycle that spins out of control. 

To finish this update: Dr. Zadroga was pleased with how Paul's ear looks, and especially that Paul's been off the antibiotic for a month now with no recurrence of infection. She wants to see him again in two months for a quick follow-up, mostly a courtesy. On the flip side of that, however, she stressed that if ANY sign of infection appears--pus, draining, whatever--we're to make two calls AT ONCE. The first call is to be to Dr. Walsh, the second to her, as we'd want to get antibiotics going again IMMEDIATELY. She explained that if this happened it would more likely be a new infection, not a recurrence of the previous one, and they'd want to catch it fast, not wait, because waiting would allow more damage, and then there'd be more negative impact on the overall reconstruction. (So we would appreciate prayer that this continue to heal without any further complications, and heal quickly.)

 

 Wednesday, May 15 2013 10:09 PM, CDT

Continuing to "hold the course"

That is essentially what Dr. Walsh said on Monday. He reaffirmed that granulation is continuing. Last week he'd mentioned that the area of cartilage that is still exposed is approximately 3-5 millimeters in size, and that it was about five times that at the beginning of this saga (in other words, approximately 15-25 millimeters). The area is remaining clean and there's been no evidence of a recurrence of the infection, so our job is to keep on helping it to stay clean while the granulation occurs.

Dr. Walsh stressed that if ANY problems arise--any pain, copious drainage, blood, redness, anything that concerns us--we are to call him straight away. Due to his schedule it'll be two weeks before we see him again, though we will be going in twice more this week and twice each of the next two weeks for packing (so we will see Jane and be able to consult her as well as contacting him if need be).

Dr. Walsh confirmed my conclusion that as the granulation continues (i.e., that tissue completely covers the cartilage) the small amount of serous fluid that I observe on the packing when it's pulled will diminish and eventually disappear. Right now this is an open wound, and open wounds "leak" a bit of fluid. The packing absorbs it, and helps keep any contaminants away while the granulation takes place. Once it's completely covered or closed I believe we'll be able to end the packing, and that will be the point at which we will look at resuming the reconstructive process.

On Paul's behalf, as you continue to pray for this cartilage coverage/granulation/clearing of infection, I would ask for prayer for further healing of his left eye. He observes, and has asked Samuel to confirm it for him, that there seems to be a slight bit more lateral movement of his eye. Dr. Silbert had told us that it was unlikely that there'd be recovery of that lateral movement. I have watched when Paul is testing this out, and it does appear to me that there is a slight bit more movement. Absolutely, God could miraculously heal this, be it all at once or more gradually! Or He could leave it as it is, something of a thorn in the flesh such as the apostle Paul experienced. Please pray God's will be done in this, whatever form that takes. It will be healing, even if not the type of healing Paul wishes. Pray too that Paul will trust God's hand and have patience through this long process...both the ear and the eye, and the recovery from a TBI.

Oh, heavens, I'm starting to rhyme! I think I'd better wrap this up and bring the day to a close.

 

Thursday, May 02 2013 5:55PM, CDT

There is not a lot of new news to post today. We're back on a "three times a week" in clinic for repacking, which was disillusionment for Paul. He'd thought that since the antibiotic was ended the packing would also end, so when that was mentioned he was slightly appalled. We are at present scheduled for MWF for this week and next; I figure it's easier to cancel appointments than it is to squeeze more in, and that when we see Dr. Walsh on Monday we'll decide how frequently to come in for the following week(s).

One of the lower openings has almost closed already. Brianna (who did the packing on Monday) left that one unpacked, as she couldn't get the tape through. How Jane did so yesterday I'm not sure, but she did, using a narrower tape (1/4 inch rather than 1/2 inch), and said that that was the last time she would do that one--it'll be left to close on its own now. I will pull the packing this evening, as is our usual pattern and Paul goes in tomorrow morning for another packing.

Dr. Walsh confirmed that granulation is continuing. He described it as "pink is creeping across the white (of the cartilage)", which is what we want to see. It was surprising to hear that it'll still be a while before we're ready to resume the reconstructive process. I'm not sure why, so I want to ask that question on Monday when we see Dr. Walsh again. Obviously, he can't give me a specific date, so I am really looking more for markers along the way. Please do pray for Paul to bear this well, as the waiting and waiting and waiting, and the slowness of the process, is rather torturous for him (if you know Paul you probably are not surprised by that!). And the frequent appointments wear on him, too. He'd like to just be done with them, but that's not in the cards for the present.

That is about all for now. We're in a holding pattern with the packing while we wait and work toward the closing of the drainage openings that Dr. Walsh created, and the growth of tissue to cover the cartilage. I'll keep updating as things develop, but for now we wait, and pack, and pray, and make decisions as needed.

 

Friday, April 26 2013 4:17PM, CDT

Well, after a few days' delay, it's time to see how well I can summarize what has been decided following the appointment with Dr. Zadroga. That was on Monday. She was pleased with how Paul's ear looked, relative to the infection: clean, no signs of infection (redness, swelling, tenderness, draining), and showing signs of closing up. All those things suggest, as we'd discussed with Jane last week, that the infection has been vanquished. Dr. Zadroga, in fact, said that she believed that one of the biggest helps to the infection clearing was Dr. Walsh's opening the area more to facilitate draining. She'd explained that when pus is present the antibiotic is limited in its effectiveness, so the actions to get rid of the pus enabled the antibiotic to attack the infection more effectively.

Dr. Zadroga is about as baffled as Paul and me about the quantity of Bactrim we have left. She inquired what strength the tablets were (I had to call and give her that information). Her best guess is that for whatever reason we were given more tablets than we realized at the time; she couldn't see that we would have missed twenty-plus doses! I couldn't see that either; many times I would ask Paul if he'd taken it, or remind him to do so, and he remembered quite a lot without me prompting him. I could see up to five times we might've missed a dose, but we would always get back on track with the next dose.

Anyway, after bouncing that around and trying to figure what had happened we agreed to let it go. Dr. Zadroga decided that Paul should continue to take the Bactrim for a few more days, through Saturday, then stop and we'd see what happens. She believes that nothing will happen--no recurrence of the infection, I mean--and that the burden of activity will be on us and Dr. Walsh to continue doing the mechanical measures to keep it clear and close up the openings. Obviously, if we notice ANY signs of infection we are to call her immediately, and she does want to see Paul (us) again in a month for follow-up. She said that it would take several days to see indications of infection recurring, which would be toward the middle or end of next week. I suspect if we get past that point with nothing changing in the wrong direction we will be able to say the infection is completely gone.

Yesterday I finally talked with Dr. Walsh. He was not in hospital on Tuesday; his mom had died, as had been anticipated, and he was occupied with family and her funeral that day. Through Jane he'd let us know to wait to call him Wednesday afternoon, when he'd be back to work, and also that if he didn't call us back to call him again! We were in clinic on Tuesday for a repacking, so we told Jane what Dr. Zadroga had said and decided. Jane concurred that the infection seems to be cleared, and that the main focus now will be encouraging the openings to close. She packed it lightly again that day (and based on appearance did so again today).

We touched on an issue that continues to bob just below the surface--me doing the packing. I am still torn about it, wanting to take on the task yet finding myself so unsure that I will be able to do it successfully, especially as the openings close up and it becomes more challenging to insert the packing. Right now Jane usually draws the tape through, from top to bottom, using curved little forceps or something. When she was on vacation Brianna used a "push the tape in from the top with a swab" technique. Jane has said again and again that I could try any time we are in clinic for the packing (she said I have seen it done so many times I could tell her what to do--and I think to myself, "There's a lot of difference between telling you what to do and doing it myself!"), and reiterated that it is no problem for us to keep coming in for her/them to do it. They are there, in clinic, so they're available. That is true; the tension for me is that Paul is so tired of all these appointments and so ready to be done with all of them. I'd like to relieve that for him, yet I am so unsure, and I keep putting off even attempting the packing.

That was Tuesday. I did give Dr. Walsh a call Wednesday, but we didn't actually talk till Thursday afternoon. He was helped to hear that Dr. Zadroga wanted to stop the antibiotic after a few more days, that she considered the infection cleared and that the primary action will now revert to him, to decide with us when we will resume the reconstructive surgeries. We will see him Monday, when he'll have an opportunity to look at Paul's ear himself, and we'll continue discussing what to do and when.

I raised the same points I'd made with Jane on Tuesday and was both surprised and encouraged to hear him say that it's not a problem for me to not take on the task of packing, that we could continue to come into clinic for it. I'd had the distinct impression that I would be doing it, at some point, that it wouldn't be an option but mandatory as we worked to clear the infection. Perhaps because the infection has cleared so well things have changed; perhaps the "two or three times daily" regimen he'd spoken of isn't necessary, and consequently it's not as necessary for me to do it. I may well bring this aspect of it up on Monday and see what he says, to be sure I understand things correctly.

My ability to do this packing, if it is necessary for me to do so, is a huge prayer request. My willingness isn't really the issue; it's more doubt that I would be successful. I fear that I would not be able to sense how much packing is in, that I would put in too much or too little, that I wouldn't even be able to insert it. And then there is the whole "me-Paul" dynamic, his trying to be encouraging actually being overwhelming to me, and our slipping into a downward spiral that would end with me giving up and him being irked, and both of us frustrated. Pray for direction on this, and for graciousness, and grace. I think Paul would be bugged by needing to go into clinic for the packing, if I resist trying or doing it, so I feel pushed to do it no matter how doubtful I feel, and that's not a helpful position. I think Paul would need graciousness, and I need grace, and we all (including Dr. Walsh) need wisdom to decide wisely what immediate steps to take, and what the longer-range plan (when to resume reconstructive surgeries).

An additional prayer point is for the granulation (i.e., the tissue beginning to grow) continue and remain healthy, and cover the exposed cartilage. The closing of the openings that were created to facilitate draining is another concern, especially the largest upper opening. The two smaller, lower openings will close more easily, the larger will need more help.

That is about all for where we are as of today. I'll keep updating here as we continue through this process.

 

Tuesday, April 16 2013 9:58PM, CDT

After two weeks of thrice weekly appointments for repacking we've dropped down to twice weekly for this week, and most likely for next (only one appointment for repacking is scheduled for next week at this point).  That is a relief to Paul, as the frequent appointments were and are an irritant to him.  For a fellow who only would go to a doctor when he was sick this season of MANY appointments is distressing.  He'd like to simply be done with appointments, but that's not going to be the case for a while yet.  Even if I am doing the packing we will need to check in with Dr. Walsh regularly.

During today's appointment Jane indicated that the area is clean.  As she said, she flushed with saline and only got saline out--no pus or blood, which tells us that the infection is cleared.  The combination of antibiotic and packing has apparently been effective in conquering it!  Jane felt that when she used the widest packing it did the most, mechanically, to pull out the infection, as it seems to have been since that time that the infection really started to clear up.  Today I discovered that, though Paul and I did our best to ensure he was taking the antibiotic regularly, he missed more doses than we'd realized.  The appointment with Dr. Zadroga on Monday was to be after or near the end of the 30 day extension, but by my count of the tablets left Paul will have about 10 more days of antibiotic to take, to finish this course.  I'd anticipated that we would discuss with Dr. Zadroga Paul going off the antibiotic so we could see what happened with just packing.  Now I don't know if Dr. Zadroga will want him to finish the antibiotic and then see what happens, or stop now and see, with the antibiotic in hand to resume if the infection recurs.  My feeling is that if the infection has been clearing even with missed doses we might well see it stay clear without the antibiotic.  On the other hand, the relatively steady level of antibiotic in Paul's system might be a larger factor in the cleanness of the area, and losing that might allow the infection to spring back.

 

Basically, this is not quite as clear an issue as I'd been expecting it to be, so we will have to see what Dr. Zadroga has to say on Monday.  Please pray for wisdom, especially with this wrinkle that's emerged.

 

Another positive note is that Dr. Walsh did confirm that granulation is the way he describes new cells forming...so when he mentioned that he was noticing granulation last week he did indeed mean that there were cells forming, suggesting that the tissue is beginning to cover over the cartilage, which is something we want to see!

 

And yet another positive is that we are definitely moving toward lighter, looser, narrower packing, to encourage the cavity to close.  Jane observed that the lower slits were smaller, and the upper opening is more rounded (and to my layman's eyes is slightly smaller).  She's using half-inch packing, and pushing it in more loosely.

 

Along with all these good pieces, there are bumps and bubbles along the way.  Dr. Walsh let us know today that he might not be around to stop in and talk with us next Tuesday, as would normally happen.  I'd mentioned some time back that his mother had experienced some medical issues.  From what he said then and today, she has had some strokes, and she is going downhill rapidly now.  He is expecting that within the week she will likely die; she is at home with hospice care.  So his schedule is likely to be disrupted by that and by her funeral, and he is likely to be distracted.  We are praying for him, and her, and for the whole family.  However, he stressed that he needs us to keep in touch with him, even in the middle of this eventuality.  If he is in hospital on Tuesday he'll stop in to talk with us about Dr. Zadroga's recommendations.  If he's not he said to call him; he'd likely have his phone off but he'd call back as soon as possible.  And if he doesn't call back call him again the next day!

 

That is a fair recap of the tangible, material aspect of what's happening now.  The rest is "more about me", or "more from me" as I look at the bigger picture, what I consider the softer stage of Paul's (and our family's) recovery from a TBI.  Last night I was feeling much more overwhelmed and weary, and I had not the opportunity to write.  I think that is good, as I have found the burden lighter today.  Even so, I want to keep before you, for prayer, the reality that we need your continued prayers as we continue along this journey.  The emotional and relational healing is often like a roller coaster; it'll seem to be going along fairly smoothly, and then suddenly we seem to come over the top and are flying downhill.  Or perhaps it's more like going along the river, and suddenly we're caught in the rapids, and we're going under.  Yesterday wasn't quite "going under".  I think the better way to describe it was that I was reminded, rather forcibly, that I am still the linchpin in this family, the one who is monitoring and mediating most of the relationships.  God's grace is ever-present, and I have been awed and humbled to see how He is moving in me as I minister to Paul and our children, speaking and encouraging and urging them, and how He is working in each one of us.  At the same time that I am encouraged by that I am also aware that I am tired.  Keeping my balance is an ongoing challenge.  So please keep praying for me to keep my eyes on God, to hold onto him, and to trust him to guide me and Paul, and our children, as we navigate this river.

 

Monday, April 08 2013 4:37PM, CDT

We are moving along on making a plan for how this whole "clear the infection so we may resume the reconstructive process" will proceed. Nothing is definite yet but we have some time-frames in place, so I know about when we will be making firmer decisions.

Last Monday when we met with Dr. Walsh, during the clinic visit for flush and repack, the matter of how long to wait came up. It seemed to me that I replied without ANY thought, "Let's wait till Paul finishes the 30 day extension on the antibiotic, and then stop that, and see what happens." I say that it seemed I didn't think about it, for it felt I opened my mouth and that popped out; in reality, I suspect I had been thinking it, so when the issue came up the idea was there and flowed out. It surprised me, and it surprised Dr. Walsh, yet it felt very right. Dr. Walsh said that that sounded like a good timeframe, and a solid plan. So he decided we'd leave it at that, keep thinking about it, and continue talking about the plan each successive week, whenever we see him. We don't always see him when we go in for the repacking; mostly if it's Monday or Tuesday he comes in, as those are his clinic and surgery days, respectively, so he's on-site when Paul has his appointments.

 

Last week, also, we discussed further the idea that I would do the flushing and packing myself. My worry that Paul and I would end up in a snarl as I attempted it, and he aimed to help and encourage...which could so easily spin into his overwhelming me, so I would want to throw up my hands and step away (to calm down so I could step back and continue), and he'd react negatively, and it'd become a fiasco.... I didn't know quite how to handle it; I laughingly remarked that if I were packing it Paul would have to keep his mouth shut. Dr. Walsh took that and with a measure of humor, but quite seriously, told Paul that he'd order the "Walsh rule", which was "No comments while she is doing the job." Paul laughed, but I think he also got it and will comply with that rule if I do the packing!

 

Today Dr. Walsh confirmed that the idea of stopping the antibiotic and seeing what happens is what he wants. However, the choice and course of antibiotic treatment is not Dr. Walsh's area of expertise. He knew to prescribe an antibiotic when it became clear there was an infection, but he also knew that it would be wise to involve the ID folks, who are much more experienced with antibiotics--how and what to prescribe. So he wanted to know when we were following up next with Dr. Zadroga. That is April 22, two weeks from today. He wants us to find out what she recommends about the antibiotic, implying that if it's a short-term continuation of the Bactrim he'd go with it, but if she were to say stay on it for six more months he'd likely want to talk to her himself. I'm thinking that Paul will either be done with the 30-day extension of Bactrim when we see Dr. Zadroga, or will be very close to done. My expectation is that that will be the end of the antibiotic, especially since the amount of pus seems to have diminished to almost zero, and we'd watch to see what happens with the area where the infection seemed to center, where the cartilage was exposed.

 

On that matter, last week Dr. Walsh took a look and observed that the cartilage still shows white. Ideally, as the infection clears, skin will cover it so it'll appear pink. Today when he looked he remarked about granulation, but I'm not sure exactly what that means--I'm thinking it's either blood vessels or skin.

 

On this same aside, when I removed the packing one day last week it bled more than it had done any other time. We reported that to Dr. Walsh, and he was actually rather pleased, saying that that is an indication that the blood vessels are growing in the area properly. He also was pleased to hear that Paul is experiencing more sensitivity in the area, again because that is an indication that the nerves are connecting!

 

As of now, Paul will go in for repacking Wednesday and Friday of this week. The packing that was put in place today may be removed tomorrow evening if I wish, or left till we get into clinic Wednesday. That day's packing may be removed Thursday evening or left till Friday's appointment. Friday's packing, however, I will have to remove myself somewhere between Sunday evening and Monday evening, as Dr. Walsh doesn't want it in more than two or three days. We will see Jane and Dr. Walsh on Tuesday, April 16th, which is part of why I will remove the packing Sunday or Monday.

 

Tentatively, we will be back in clinic (with Jane?) that Friday, April 19th, and then Tuesday the 23rd, when we will know what Dr. Zadroga's recommendations about the antibiotic treatment are. That will be part of what we discuss as we begin to firm up what we will do next, and when.

 

Perhaps the biggest message in all this is "We are going to make a plan, we are going to move along on this--we just don't know what the plan is, what to do and when, what is best...so we need to keep talking." Going along with that is the biggest prayer need is wisdom. Wisdom for Dr. Walsh, and Dr. Zadroga as she provides the ID expertise that Dr. Walsh needs as he considers what to do. Wisdom for me and for Paul as we think about this and engage in discussion with Dr. Zadroga and especially with Dr. Walsh. Paul has admitted that Dr. Walsh's opinions are better informed than his own, implying that he is accepting that he himself is not best suited to making the final call. So there is a need for wisdom for Dr. Walsh (and for me) to hear Paul's input, factor it in, yet decide based not on emotion but on fact.

 

Pray for wisdom, therefore, and pray for grace--for the grace that each one of us needs. Dr. Walsh's need is different than Paul's, and Paul's is different than mine, and mine is different from theirs.
 
I would also ask for prayer that the cartilage would indeed begin to be covered over--would appear pink instead of white when Dr. Walsh takes a peek. And that the antibiotic would completely clear the infection, which would also aid in the cartilage being covered over by skin. And for the establishing of blood vessels and nerves, which does indeed appear to be happening. All in all, the area looks healthy and the skin graft is doing well...we simply need the infection to clear and the cartilage to be covered with healthy, infection-free skin.

 

 Thursday , March 28 2013 4:34 PM, CDT

Not unexpectedly, the decision was "continue what we are doing." And now that I've made that statement let me flesh it out.

Jane, Dr. Walsh's PA, was pleased when she tried pressing out pus and whatnot from Paul's ear--and obtained virtually NONE. She felt that one factor that had been instrumental in that was her choice of inch-wide packing tape, which allowed more gunk to be grabbed and consequently pulled out when the tape was removed. This was especially pleasing because I'd removed the packing Sunday morning, so between then and Tuesday morning there was very little pus buildup.

That said, there is pus on the packing when I pull it, so the infection is not completely conquered.

Jane observed as well that one of the incisions--those that Dr. Walsh did to facilitate drainage--seems to be closing up a little. It was not bad, and she had no trouble getting the packing in...a relief, for more reasons than one.

Dr. Walsh joined us at this juncture, and took a careful look himself--as he said, he wanted to try pressing out anything himself, for his own information! I had left a letter for him with Jane on Friday, putting my thoughts about the "ladder of options" in writing. My feeling was that that would help the discussion (and I did, as planned, give Paul a few notes with the major points so he wasn't blindsided). Dr. Walsh appreciated that and stressed that he heard clearly my concerns and reservations. And then ... here's where it gets a bit dicey.

Yes, we are going to stay this course for now. Dr. Walsh didn't say for how long, but my sense is that it'll be for the roughly <30 days of the extended antibiotic. However, this means that something that had been discussed a couple weeks ago when Dr. Walsh opened up the area for easier packing and draining IS going to land on my shoulders: I will be called on to do the flushing and packing. Dr. Walsh even said that his ideal would be twice daily changing the packing, to "rip out the infection." I don't know that that will be feasible, at least initially; I'm not even sure that I will be able to handle doing this. I have watched Jane do it, so I have a fair idea of the procedure, but I am not sure how well I will do with it. Jane asked if I wanted to give it a try on Tuesday, but I said that I would do better if I had a few days to tell myself, "You're going to be doing this." Most likely tomorrow when we see Jane again I will actually attempt the packing, and probably will be given the materials needed to do it at home!

We have scheduled Monday-Wednesday-Friday appointments for the next two weeks for the in-clinic flush and repack, for the next two weeks. How that might change if I am doing the packing at home I don't know, but that's what is on the calendar. We'll see Dr. Walsh on the Mondays, so we'll know if there are any changes needed to this plan.

The two main prayer points for this are: Pray that the infection would continue to clear, with both the antibiotic attack and the mechanical attack; and pray that I will be able to manage this flushing and repacking. In conjunction with that, pray that Paul will be gracious with me as I take this on. I fear that it could deteriorate quickly if I am trying and struggling, and he presses me or starts telling me what to do, and I freeze up under that pressure. I believe, especially after what I wrote to him and the conversation with Dr. Walsh, that he is more understanding and will be gracious.

 

 Thursday , March 21 2013 10:24 PM, CDT

I feel that I have not fully sorted out facts and thoughts since Tuesday's and Wednesday's appointments with Dr. Walsh and Dr. Zadroga, respectively; the days have been full as usual, and I haven't caught up in my journal, so this may be scrambled a bit, and I may come back in a later update and clarify things.

That disclaimer made, here's the newest news on the sub-saga of the infection:

Tuesday's appointment with Dr. Walsh began as usual with the packing being pulled out and an exam of the ear. I expected then that Dr. Walsh would indicate when to come back, and be on his way (Tuesday is his surgery day, so he was headed to the OR after seeing us and a few other patients). Instead, he sat down and opened up a conversation with us, setting up for an ongoing discussion of what options we have and what might we do regarding this infection and the overall ear reconstruction. He started, in fact, by telling us plainly that he's been talking with others--particularly the ID staff--because he needs their objectivity in this case. He's invested a lot of time and effort into the whole process of reconstruction (and he says he's done very little, we--Paul and I--have endured far more), and he is finding it hard to "let go". I'll stress that we are not quitting the process; I think it is more that Dr. Walsh is working his way through the reality that we've hit this huge bump and he may have to scrap his original plan for reconstruction. Bottom line, I think his question is, "When is enough enough, when do we say it's time to throw in the towel?" And really, we don't have a clear answer on that yet.

Anyway, he outlined the rungs of the ladder as he sees it, the various options we have before us. There's no rush to decide, but we do need to have the dialogue going, because sooner or later we will have to do something. Dr. Walsh stressed that this will not be left to go on indefinitely, this constant draining and packing and flushing and repacking and antibiotic treatment will not become our "new normal". Starting at the bottom, we could: Continue with what we are doing now, the packing and flushing and repacking, and antibiotic to lick the infection; further open the area surgically to allow for more packing and easier draining of the pus and infection; remove the anterior portion of the cartilage where the infection might be centered; remove the implanted cartilage (in other words, the foundation that Dr. Walsh carved and placed as the foundation for the reconstructed ear); remove not only the cartilage but the whole outer ear and give Paul a prosthetic ear that would have to be redone every 18-24 months.

Clearly, the further up the ladder we go, the more aggressive or invasive the procedure is, and the more "damage" to the intended reconstruction it would do. There are many unknowns to this, which is a factor in why it's hard to decide what to do. The biggest unknown, to my thinking, is how long to wait and try the actions of the lower rungs. Putting that another way, at what point do we say, "We've tried this long enough, it's time to move to another rung"? I don't think there's an easy answer to that, and probably it is impossible to map out at this moment.

This is where making a decision will be a team effort--we and Dr. Walsh and Dr. Zadroga will all weigh in, and seek to come to consensus. Dr. Walsh told us Tuesday that he would be talking to Dr. Zadroga, and she said that they had indeed had a lengthy conversation. She said he is beside himself about what to do and needs the objectivity of someone who's not as emotionally invested as he is!

I felt that what Dr. Zadroga had to say was most supportive of simply continuing the course of treatment we are presently pursuing, namely the packing and flushing and draining (the mechanical measures) coupled with the antibiotic. She was pleased with how much better the area looked yesterday, in comparison with how it had appeared two weeks earlier (and Dr. Walsh has likewise been pleased that the skin and such is staying healthy, which is very good). The antibiotics, therefore, are doing their job, and as we continue with the mechanical aspects, which are Dr. Walsh's province, there is hope and expectation that the infection will be licked. Her statement that this sort of infection does take a long time to clear was both encouraging and discouraging! It's encouraging in that there's hope, but discouraging that it's not a quick process. That is the piece that is probably the hardest for Paul, that this is dragging on and on, stretching out the whole process of reconstruction.

So, where are we now? Well, Dr. Zadroga extended the antibiotic for another thirty days, and we will continue the packing, flushing, repacking, squeezing and draining. Tomorrow is another check-in with Jane for the flush and repack, and we'll have yet another on Tuesday, which will also include more discussion with Dr. Walsh as to what rung to move to. My desire is to stick at this rung, to keep doing what we are doing for at least this next month until the extended antibiotic runs out and we see Dr. Zadroga again. At that point we would reevaluate and adjust the plan based on what is happening with the infection and the healing. I think Dr. Walsh will be comfortable with that, as the overall condition of the graft and all is good. He stressed that right now there is no real danger to Paul in waiting and doing what we're doing. He'd take immediate action if he saw any indication of danger to Paul!

Please be praying with us for this. Paul is weary of so many clinic appointments. He's resigned to it, and I do believe that after being squeezed in at the Eye clinic on Tuesday--to confirm that this infection with the ear reconstruction is not affecting his eye at all!--he is more accepting of staying the course and getting this infection cleared. We have talked some, but it's hard to address between the two of us; it's a very emotional issue and we frequently run into difficulty when we begin to talk about very emotional stuff. I pray that we'll make some progress on that over this weekend, and then as we meet with Dr. Walsh on Tuesday will have a profitable conversation. Having him as somewhat of a mediator could be beneficial for Paul and me to help us hear each other well. I'm planning, too, to put some of my thoughts in writing for Paul as that also helps remove some of the emotional layering so we hear and can discuss things without so much risk of upheaval and misunderstanding and hurt feelings.

 

 Tuesday , March 12 2013 6:21 PM, CDT

Yesterday I kept mentally writing bits of an update, but didn't get to actually typing them here. Now all those bits have slipped away and I am struggling to find words. More and more I see the emotional impact of this long haul hitting, and it is hard. I am tired--WE are tired.

So. Let me "stick to facts" for a few minutes. And first off, let me admit that I had somehow missed the fact that pus had been present in the fluid draining from Paul's skin graft prior to the appointment with Dr. Zadroga! Jane told me that when we checked in with her the day after seeing Dr. Zadroga. Oops. How'd I miss that?

During that appointment Jane did the pressing and squeezing to force out as much fluid and pus as possible before flushing and packing the area. She'd reviewed Dr. Zadroga's notes and encouraged me in particular to persevere with the squeezing and pressing technique. As it happened, Paul pretty much took over on that after we'd had a bit of a tiff about it (one area adding to the emotional crushing that I am feeling). I would do my best to press out all the fluid, but I couldn't sense what he was feeling--he would say he could feel more fluid "in there"--and we'd end up snapping at each other, not really listening to the other and hearing, and working together. He was sticking on the point that Dr. Zadroga had made, how important it was to get rid of the pus so the antibiotic could work, and he faulted me for not being as aggressive as she'd been. He even said that Jane wasn't as forceful about it as Dr. Zadroga. At that time it seemed he couldn't hear me remind him that I am not either one of those individuals, I am not trained, I can't pick up on the clues he does (like sensing there was still fluid in the area)...so we snipped at each other and ended up frustrated and hurting.

Over the weekend, then, I basically stepped away and left it to Paul to do the pressing and squeezing, to force the pus out. On one level that's been good, as he is able to do so whenever it occurs to him; he's able to far more frequently apply pressure and keep forcing out that pus. On another it cuts me out of a place of serving him, helping tend to his wound, and that slashes at me. I want to minister to his need, but it seems that if I am not doing so in accord with his expectation he pushes me aside to do it himself, his way.

Yesterday we saw Dr. Walsh again. I'd expected it to be the same "look at the wound, manually drain any pus/fluid, flush and pack" that we've had the last several times, so when Dr. Walsh came in and asked us what was going on I was at a loss as how to answer. In fact, I feared that if I opened my mouth I'd only seem to be whining. So I stayed quiet, and Paul didn't quite know what to say, and Dr. Walsh started looking back and forth between us, waiting for someone to speak up. Thankfully Jane finally did, recapping what we'd said about the appointment with Dr. Zadroga and what she was seeing now.

It was interesting for me to watch Dr. Walsh studying the graft and the infected area. I could almost see the wheels turning in his head as he considered what to do. But when he said that he wanted to enlarge the openings for better drainage, to give us a better chance to clear the infection and keep this graft alive and healthy...he indicated where he'd make this opening (so it would have the smallest negative impact on the graft)...it was a bit of a blow. Then he went on to look at me and say they would have me learn to pack the wound! My reaction to that was initial shock, then "if I must, I'll try to do this." Honestly, as things stand, I shuddered at the notion of trying to pack Paul's wound, lest I fail and be blamed for messing things up. But I wanted to be willing, to help in any way I could to promote the healing of this infection.

Once past the shock of "I want to open up the drainage" announcement, my first question was, "Does this mean scheduling surgery, or is it something we can do here?" Dr. Walsh answered that they could do it there, in clinic; the dilemma was when. I said that Paul had Monday off, so we were available all day. After looking at the schedule Dr. Walsh decided that if we were willing to stay around right then he'd pull us back in whenever they had a break, and we'd get this taken care of while we were there, so we wouldn't have to come back later in the day. We were willing, so we went out to the waiting room for a short time, and then were called back to go to the clinic procedure room.

The procedure didn't take long; Dr. Walsh made two incisions so there would be ample opening to drain pus and fluid through. His aim was to have gravity aid in this, by drawing it downward and trying to encourage healing from the top. During this time I came to the conclusion that though I wished to handle it, I simply couldn't take the task of repacking this! Dr. Walsh, bless him, replied that he wouldn't put that burden on me...especially since he was having a bit of a struggle himself to get the packing in! He did ask if I thought I could handle removing the packing, which is absolutely do-able for me. So the arrangement is that the packing Dr. Walsh put in place yesterday will remain till Paul sees Jane tomorrow; she will remove it, flush and repack the wound. That will stay in place till Friday, when again Jane will remove it, then flush and repack. I will remove Friday's packing on Sunday, and we'll see Jane (and probably Dr. Walsh) Tuesday morning!

Please pray that this move will facilitate the draining of pus, so the antibiotic will indeed be able to work well at conquering the infection. If this doesn't work, if we lose this graft -- well, I'm not completely clear on what will happen next, but I think it will involve using some reserve that Dr. Walsh really wants to keep "in reserve" for later steps in this process. I'm sorry, that's rather convoluted!

As you pray, I plead for continued prayers for us as we struggle through the emotional levels of this journey. My sense is that Paul is struggling most with questions such as why God has chosen this path for him, why he is experiencing so many physical problems (this infection, the strabismus, other aches that are perhaps simply age-related) that are just piling on top of one another. For me it is weariness. Yesterday, during the appointment, Dr. Walsh alluded to coming to the end of our rope, and I replied, "I think I am past the end of my rope." That's what it feels like, often; I must push myself to do the things that need doing, and much ends up slipping past because I have so little energy to tackle the task or the challenge. I suspect that played a role in his deciding not to put the burden of repacking the wound on me right now. God is gracious, he has carried me (and us) thus far. I keep looking to him to guide me and sustain me as I stand beside Paul through this. I pray that he will keep my eyes, and Paul's eyes, on him, and that we will see him work on our behalf! Pray that for us, please.

 

Wednesday , March 06 2013 4:42 PM, CDT

Sigh.

Lord, what are you wanting us to learn through this detour along the road of ear reconstruction? The delays and bumps are seeming to continue, and it's hard to hang on when we cannot see the end, when the timing is still on hold pending the resolution of the infection.

Dr. Zadroga today said that the current antibiotic that Paul is taking seems to be doing the job well. He is not experiencing any side effects that would indicate the need to change the antibiotic.

However, when she examined the ear--when she pressed on the area--both fluid and pus came out. Just before this I had observed that the area seemed to be puffy, and as soon as the pus was pressed out that puffiness vanished. I'd not seen pus coming from this before, so my first thought was, "Now what?" Dr. Zadroga took a swab to send for culturing; if it reveals some other bacteria she will let us know and possibly prescribe some other antibiotic. In the meantime, he's continuing the present antibiotic...although Dr. Zadroga decided to extend it for an extra five days. Jane had prescribed ten days, so this takes it out to fifteen. She sent the prescription to our pharmacy and I picked it up, so we have it on hand and ready to go when Paul finishes the first ten days' of tablets.

Dr. Zadroga explained that when pus is present antibiotics cannot perform as effectively, so it will be crucial to use the mechanical methods of draining the fluid and pus. I mentioned my apprehension that I might do damage to the skin graft (if anyone does damage I'd rather it be Dr. Walsh or Jane!), and she said not to worry too much, to be firm and press well on the area, to get the pus out, but not to be abrasive. She advised two or three times a day, so I will be aiming for that.

Thankfully, because both Dr. Zadroga and Dr. Walsh are connected to HCMC they have immediate access to the notes the other writes. In other words, Dr. Walsh will see the notes Dr. Zadroga added after Paul's appointment this morning, so he'll know what she saw and ordered. As he had indicated, he will manage the mechanical treatment while Dr. Zadroga handles the medicinal treatment. Both are very crucial! I suspect that Dr. Walsh will be checking for notes from today, and very possibly will pop in tomorrow when we see Jane, since there's been this development of pus within the pocket. We'll see.

A few prayer points: Pray that the pus and fluid do drain out, be it with and without assistance. Pray I'd be faithful to do the squeezing or pressing it out as directed. Pray the antibiotic would keep helping to conquer the bacterial infection, especially as we keep the pus and fluid draining out. Pray for complete healing of this!

We will check in with Dr. Zadroga again two weeks from today, to see how things are looking, if the infection is clearing and all. Pray for peace and patience for Paul, especially; it is hard for him to endure all the doctor's appointments and treatment measures that are prescribed. And that makes it hard for me, as I am doing some of the home treatment and must encourage him through his reluctance to follow orders "to the letter".

 

Tuesday , March 05 2013 6:33 PM, CDT

Developments from Monday's appointment:

The particular bacteria that is present, causing the infection, is MRSA, or methicillin resistant staph aureus. Jane (Dr. Walsh's assistant) had told Paul this on Thursday when she gave him the prescription for a different antibiotic that would be effective against it. He'd tried to repeat it for me, but until I saw it written down yesterday I couldn't make sense of the name!

Blessedly, the pocket of infected fluid has shrunk since last Thursday, meaning that the dual measures of mechanical and medicinal treatment are having a positive effect. The cleaning that Jane has done--a saline flush, and then packing the wound with an absorbent material that helps draw the fluid out so the wound is clean inside and is better able to heal from the inside out--is part of the mechanical treatment. The other is simply pressing gently, with a q-tip, on the area to push more fluid out. Dr. Walsh did this last week and again yesterday, and has assigned to me the honor (?) of doing it periodically myself at home!

The medicinal treatment is the course of antibiotic. Before the fluid had been cultured to identify exactly what bacteria was present Dr. Walsh had decided to put Paul back on the same antibiotic he'd taken right after surgery. Once the bacteria was identified they were able to test for sensitivity, so they'd know what antibiotic would be most effective...and that was what Jane switched Paul to.

Yesterday Dr. Walsh said that he was definitely sending us to Infectious Disease. They'd had a consult with them--at least that was mentioned as something they were planning to do--but now he wanted Paul to go to that clinic, to let them take over with the medicinal treatment of this infection, because it's moving out of his area of expertise. He (Dr. Walsh) will handle the mechanical treatment while ID handles the medicinal aspect. He was rather astounded when Jane came in and said that the appointment with ID was set for Wednesday--very fast, according to him!

Dr. Walsh took plenty of time to discuss this with us--good preparation for Wednesday's appointment! He explained that the newly grafted skin is very healthy, it's in good condition and we want to keep it that way. He further explained that the infection is in the space between the skin and the cartilage, and that's why it's so important to treat it and have it completely cleared up, so the skin and cartilage can come together without infection. And this must be done before the reconstruction process continues, lest it cause more problems later on.

I brought up a question of my own, namely, "Could this MRSA have been the reason that the skin broke down, necessitating this 'touch-up' surgery?" In my opinion, as I considered where the skin had broken down and where the pocket of infection appeared to be, they were the same location, which suggested this MRSA was the culprit. Dr. Walsh agreed that it was the same location, and very probably it had been the cause of the skin breakdown.

So, what's next? As I've indicated, Paul and I will go to the ID clinic tomorrow, to see what they have to say about the best course of medicinal treatment. Dr. Walsh told us to go with whatever antibiotic(s) they recommend, since they are the experts in this area. So, if they say to switch yet again to a different antibiotic, switch we will. I suspect Paul will not be happy about that, simply from a financial standpoint (he's had the antibiotics for bronchitis, and the one that Dr. Walsh originally prescribed, and the one that Jane switched him to). He's not thrilled in the first place about all these doctor appointments, and the unforeseen ramifications of the ear reconstruction, including this infection that we are having to treat. He'd like to just be done with this whole process, so please do pray that he will stay the course, following the doctors' advice to lick this infection so the whole process can be completed.

Additionally (and again, somewhat unhappily for Paul), we will see Jane again on Thursday for another flush and pack session. That makes him unhappy because the packing usually must stay in for 24 to 36 hours, and it is hard to shower with that strip of absorbent material protruding from his ear.

And then we are scheduled to see Dr. Walsh again next Monday, so he can have another look at how this is healing. The hope is the combination of mechanical and medicinal treatment will conquer the infection. If it's not continuing to improve, Dr. Walsh said, he would consider opening up the area more (to make it easier to drain the infected fluid). He wishes to avoid that, as it would take longer to heal, so we would appreciate prayer for the infection to be wiped out with these measures that we are currently employing. It was encouraging that the pocket of fluid was diminished, as I mentioned already, so I am hopeful that it will continue in that direction and we will see full healing of the infection over the coming days!

Pray, too, that I will successfully handle the "pressure draining" action that Dr. Walsh delegated to me. I'm wary lest I cause any damage to the skin graft, so I may be more tentative than he and not do as thorough a job as he.

 

 Saterday, March 02 2013 10:04 PM, CDT

Upon reflection, I decided that it made better sense to do a new update, rather than continuing the previous one, which was growing long and somewhat confused, as I rambled through the emotions of the events of several rough days.

That said, all my rambling and recounting has boiled down to a time to summarize things, and to plead for prayer. I mentioned a couple times that it appears to me that one aspect Paul is particularly wrestling through is grief--there has been a loss, and in all honesty I don't think we are yet able to identify all the dimensions of that loss. We don't know, even, what more Paul will regain as time passes and his brain continues to heal, and he restocks the information banks. I go back over and over to the comment that Dr. Thomson made, that it is executive function that needs to be rerouted; much information is still contained in Paul's mind, but the file drawers are jammed and his brain is seeking another path to the information. And that takes TIME.

So several things to pray for Paul, specifically:

Pray that this executive function rerouting would continue and that there would be "jumps" in access to things he knows. He is often frustrated when he knows something but cannot say it quickly.

Pray he would be encouraged that he IS restocking the information banks, and aiding in the rerouting of pathways to data. Pray he'd be patient and persevere in the endeavor even when it seems to him he's not making progress. He's wired to want fast results, and this long recovery process grates on him!

Pray that the resistant infection in his ear would clear completely and quickly, with the antibiotic he is taking. Pray that the infected fluid that keeps leaking out would dry up, and the area would heal well from inside out.

Pray that Paul will stay the course with the ear reconstruction, since we have come so far along. He has remarked that he wishes we'd not started this process at all. But we did, and I keep saying, "We prayed about it and made our decision based on the information we had at the time. God knew that things would take this course (the delays and difficulties we are currently experiencing), yet he allowed us to decide YES to the reconstruction. Let's not look back now that we've put our hand to the plow." Yes, we can look back and wonder, but to fix on that and on what a different decision would look like...that's folly.

Shifting gears now...I realize that there was a lot of "it's about me" coming through much of what I wrote in the last update. As I have said, I believe we are in the softer phase of Paul's and our recovery from a TBI. Much of the immediate physical recovery is done, yet there is a huge area of impact on non-physical matters, particularly relationships, and his TBI adds a layer of challenge to those issues that already existed. So I ask for prayer for our whole family, that God will be our strength and patience and peace as we work through these things that would come anyway, and are exacerbated by a TBI for one member of the family.

And then I ask for specific prayer for me. One thing that has surfaced clearly over these last few weeks is the need for me, the caregiver, to take care that I stay stable and healthy. God has been gracious throughout to give me moments of respite, and he has definitely been my strength, giving me the extra I need to make it through rough days. Yet I am so tired, and I mean by that drained or depleted emotionally. The reserves of emotional energy in me are almost completely dry, and I'm looking at the big picture and seeking to remodel our framework to put in time and space for me to replenish those reserves that are so critical for me to respond with the sweetness and graciousness that my family needs (and God desires).

Thank you for hearing me ramble so in the last update. Walking this experience has been a breaking for us--a breaking that is necessary, hard as it is, in order that better things may be built, and better fruit come as God works in and through us to make us more like himself. As Paul says, he wouldn't have chosen this path, but God has allowed it, God has put us on this path, and we do pray that his perfect work will be accomplished. We want to be used by him, to do the work of the kingdom that he designs for us. We're in a hard, waiting, struggling place, and we so need your prayers...because we are so tired and so caught in the immediate that we can't always see and pray the covering prayers our family needs. We need you to stand beside us, listen, and intercede on our behalf...to hold the rope for us, to hold our hands up as Moses's hands were held up until we are able again to hold on ourselves. Thank you, God, that YOU hold us, and bless us with so many dear ones who minister your love and grace to us!

 

Friday, March 01 2013 5:07 PM, CDT

It has been good to wait till today to try to give this next installment of an update--it's given me time to settle and think, and write elsewhere, so this will be considerate, where updating earlier would likely have been full of the emotional tangle I was feeling.

First off, I think I have said something to this effect before, but just in case that's my faulty memory: We are in what I term the "soft" stage of Paul's recovery from a TBI. Overall, his physical injuries are healed. He still faces more surgeries for the ear reconstruction, and there is potential for another eye surgery if we find that's warranted somewhere in the future. Yes, he is frustrated by the vision issues, that the eye is still turned in somewhat, so he doesn't have the full, pre-accident binocular vision he had expected to regain with the eye surgery he has had. And he is frustrated that the rib cartilage (bone) that was removed for the ear reconstruction has left him with a measure of discomfort and what he calls a sword in his side, where the rib is like a sharp edge that could poke through if he were squeezed hard. That's my best summary of what he has said about it.

As these physical things have healed the non-physical aspects of recovery from a TBI have increased in prominence--what I have dubbed the "soft stage" of recovery. This includes Paul's adjustment to the changes that have occurred in him, both short-term and longer-term. That in itself would be a challenge; then add my adjustment, and each of our children's adjustment, to those same changes, and the impact the changes in Paul have had on each of the relationships within the family, and you can imagine some of the challenge that faces our family as we continue on this journey. Paul's TBI has been like a catalyst to bring out certain issues, or like a spotlight on certain issues. It isn't easy, it isn't comfortable, it's incredibly hard work and there is so much potential for fireworks between individuals as we wrestle with things. It also causes me to be careful about what I say, since it involves other people and I wish to be respectful of their privacy.

This past week was another of those really rough times for me and Paul. We are two individuals with different communication styles, and different perspectives on the same happening (how human is that?), and we've struggled with getting through to each other for years. Sometimes it clicks and we connect well; other times our words are heard, but the meaning is missed, and those are the times we tend to slip into a less-than-helpful pattern that frustrates and wounds us both...not to mention trickling over to our children. Often, too, I think we are really struggling with one thing and "blow up" over another that is not even the real issue; it's simply something that is easier to point at and fix attention on, while the true concern is avoided and glossed over instead of being tended to.

This babbling I've been doing is helpful, I hope, but I am also aware that it is simply a delaying tactic, as a part of me doesn't want to lift the veil and reveal a bit of the turmoil that Paul and I are working through. And we are, by God's grace, working through it; God has been and is very good to be walking with us in this, and there has been progress in areas that have been touchy for years. Indeed, I am convinced that the very fact that we are slowly addressing these things is a factor in the occasional outbursts of tension. God is at work, building our marriage as an example of the relationship between Jesus and his bride, and Satan doesn't want that to happen!

Monday, then, was a day of some boiling up of issues. I'd say the matter of going to the doctor was the trigger. You see, the previous week Samuel was sick for a couple days with a raspy cough and fever. As he passed the fever stage (the cough is lingering) Emily and then Paul both began to exhibit similar coughs, but in their cases the coughs worsened instead of stabilizing as Samuel's had. Paul is prone to bronchitis when he gets a cough that settles deep in the chest, and his cough was sounding like that. Emily's was, too, though this was the first time she'd had such an experience. Over the weekend, then, I began to say, "Maybe you two should go to the clinic and get antibiotics for this, since (for Paul at least) you don't shake it without them, once it reaches this state." Monday morning I called and was able to get both of them in that afternoon, and sure enough, both of them had bronchitis! 

That wasn't so bad in and of itself. Sure, illness is no fun, but it's something that happens and we have to deal with it. Somehow, in the exasperating process of getting their prescriptions filled Paul and I tangled--

 

Thursday, February 28 2013 10:14 PM, CDT

Another bump along the way

At Paul's first post-op check last Tuesday(after the touch-up surgery two weeks ago) Dr. Walsh was pleased with how things looked--the skin was alive, and there was evidence of healing underway. Tuesday of this week, however, Dr. Walsh found that there was fluid collecting under the graft, in roughly the same area where the skin had broken down and exposed the cartilage. He surmised there was infection present, and was able to get a couple swabs of the fluid for a culture (to see exactly what infection was present, in order to best treat it). Dr. Walsh decided to prescribe another course of the same antibiotic Paul had taken after the surgery, even before knowing what was causing the infection--his reasoning was that there WAS infection, and it was best to begin hitting it with an antibiotic while waiting for the cultures to be done. He also planned to have an infectious disease consult about this, to have their helpful input.

In addition to this, Dr. Walsh had his assistant thoroughly clean and pack the area on Tuesday, and again today. The goal was to cleanse it well and help drain the infected fluid (the purpose of the packing) so it could begin healing from the inside out. When Paul went in today he was given the news that it is a resistant infection, meaning that the antibiotic he was taking wouldn't do much against it, so he was given a new prescription to begin taking. Tomorrow I will remove the packing that Jane put in today, and we will see Dr. Walsh on Monday for another check on this. Please pray that the new antibiotic will be effective and that it will be healing well over these next several days.
Happily, in spite of this bump, this new graft is looking good. The skin is healthy, and I see the progress of healing overall. Please pray that it would continue to heal well.
I don't have the time tonight to write as much as I would like, so I will simply ask for prayer for all of us as we navigate this journey. There is a lot of stress as we continue to adjust to what is, the changes that have come as a result of Paul's accident. There is good stuff happening, yet there is much tension and we've had some really rough moments. I hope to share a bit more another time, I simply need more time to write, and more time to think how and what to share. Pray as God leads; he knows the whole story even better than I, and he will direct your prayers for us.

 

Thursday, February 14 2013 6:01 PM, CDT

Report on yesterday's surgery: All went well. Dr. Walsh was pleased with the condition of the skin flap, and remains hopeful that it will heal well. He is a little more concerned about the skin around the flap--I'm sorry, I am not describing it well, exactly how he referred to it has escaped me. He said that it seems a little thinner, so he was VERY, VERY, VERY pointed in saying that we must keep this whole area well coated with ointment (bacitracin or vaseline) during the healing period, to protect it and facilitate the healing. He was equally pointed in saying NO rubbing or pressing hard on this skin graft/flap, for the same reason: He wants to be very protective of it, lest there be any pressure or damage that causes it to break down, which would lead to 1) exposure of cartilage and 2) needing to use a "reserve" area to cover the exposed cartilage. He'd like to keep that reserve in reserve, so our hope and prayer is that this flap that he used will survive and heal well, and there won't be any problems along the way.

Blessedly, Paul didn't have as much negative reaction to anesthesia this time. I don't know for certain if he was given the same sedation as he was last week, but he did tell me that they'd given him something to counter nausea. I surmise that that helped. I know he was much more alert right off when we went downstairs to the discharge area than he'd been the previous week.

 

We will see Dr. Walsh Tuesday morning for a post-op check. As of right now things look good. Dr. Walsh had to fold the skin in such a way that it sort of sticks out; he explained that he'd done so in order to leave the blood flow to the area unimpeded, fearing that if he'd pressed it down more he would have compressed blood vessels and cut the blood supply, which could have resulted in the tissue dying (and we don't want that!). Actually, he forgot to explain that to me yesterday; I called him to check on this a bit ago and he apologized for his oversight. I suspect that because we've been through a number of surgeries and I understand a fair amount he forgets that I don't always know certain details. Also, he knows that I know what to do to care for Paul's ear post-surgery, so he doesn't go over every instruction in detail, as he did with the first surgery or two! Anyway, he did explain and confirmed that we must keep that area well coated with ointment as well.
 
As God leads, please pray that this will heal well, without any complications or breakdown of tissue. Most days I will be able to tend to the ointment myself, but tomorrow will be a challenge, due to our schedule. I'll do a layer, and then Paul will have to handle a couple reapplications himself before I do the last one in the evening. Pray that Paul tolerates the restriction about getting his head and particularly the ear area wet for a week (Dr. Walsh decreed that, and Paul was rather dismayed by it), and to be very gentle and careful with the skin. He is wearing his glasses sans the left bow, per Dr. Walsh's orders; pray that we find a better way to handle the glasses issue, if there is a better way than lopsided glasses because the bow puts too much pressure on the ear and causes sores. Oh, that seems jumbled, but I can't think how better to express it right now. This is an ongoing concern, as we've a couple more ear surgeries ahead and Paul would have to go with "no left bow" again. A better technique to manage this would be greatly appreciated!

 

Tuesday, February 12 2013 3:13 PM, CDT

Paul went for a check on the skin flap this morning, to allow Dr. Walsh to see how it looked and make the final decision about surgery. I had requested a call to let me know the outcome, as I didn't accompany Paul to this appointment; for some reason that didn't happen, but I discovered a note on the whiteboard when I arrived home early this afternoon--a note about when to check in and when surgery is scheduled to begin! I inferred, therefore, that the surgery was on, and chose to give Dr. Walsh a quick call to confirm it.

Happily, I reached him right away, and he did confirm that surgery is on for tomorrow. He added that he is pleased with how the skin looks--good and healthy--and that he is hopeful that it'll go well tomorrow.

 

Please continue to pray that all goes well--the skin flap stays healthy and alive, it takes well to its new positioning, the donor site heals nicely, God's hands and mind direct Dr. Walsh's. Pray especially that Paul will recover more easily from whatever anesthesia he is given. The sedation that was used last week seemed to hit him harder, so he's not looking forward to that happening again. I don't know if he remembered to mention it this morning (I would've done so yesterday but for the special circumstances around that appointment), and it may be too late tomorrow when we check in, but I would like to mention that he had a harder time and see what they say could be done--either use a different anesthesia or sedation, or give him something to ease any discomfort post-sedation.

 

Monday, February 11 2013 10:17 AM, CDT

Within minutes of posting the last update, Dr. Walsh called again. He said that his mother would be having tests and it'd be a couple hours, so this looked to be the best window of time to see Paul this morning. He asked if we would be able to come in, and I said sure!

By the time we arrived at HCMC's ENT clinic Dr. Walsh had already arrived, so we didn't have to wait but a couple minutes to get back and have the procedure underway.

He was pleased with how the flap looked...and then as he looked at the spot on Paul's ear he discovered that there is another spot where there's a sore, which wasn't there before. Very quickly we discerned that that was a result of the bow of Paul's glasses pressing against the skin, so Dr. Walsh has instructed to remove the bow as we did before, and we'll keep that newest sore coated with vaseline and watch it to see how it heals. Lord willing, that will happen on its own (pray to that end).

Once he'd taken a look Dr. Walsh used local anesthesia to numb the area around the delay flap, and then did the few incisions necessary to free it. We'll continue the regimen of ointment on that area and a dressing on the ear; Paul will see a resident and possibly Dr. Walsh tomorrow morning, at which time we will have a definite "go ahead with surgery" or "no surgery", depending on how the skin looks. Obviously, the desire is that it remain alive and healthy. Please pray for that, too!

And please continue to pray for Dr. Walsh and his mom, as they wait for the test results.

 

 Monday, February 11 2013 7:32 AM, CDT

A phone call some twenty minutes ago has tossed a monkey wrench into today's appointment, and is making it rather uncertain how tomorrow's appointment and Wednesday's surgery will play out.

The caller was Dr. Walsh, letting us know NOT to come into the hospital clinic for the appointment this morning as he needed to meet his parents at the emergency room, as his mom is experiencing a health emergency. He said that he wouldn't be in to HCMC today, but that maybe a little later he could have one of his residents see Paul and complete the skin incisions for the delay flap (which is what Dr. Walsh would have been doing himself, had this not come up).

On one hand I can only laugh, as I think how I requested last night prayer that all the pieces of today, tomorrow, and Wednesday would work just right...and the first answer today is knocking this morning's appointment off the schedule and leaving uncertainty about finishing the delay flap and tomorrow and Wednesday. Mostly, though, I am trusting that God has this fully in control and whatever works out will be best.

Please do pray for the working out of every detail for today. I mentioned to Dr. Walsh, when he spoke of possibly having Paul come in later to see a resident to have the skin incisions done, that Paul is scheduled to work today, so after one o'clock he'd not be readily available. If the incisions aren't done I am not sure how we'll proceed. So pray for the waiting, and for Dr. Walsh to figure out what is best. And pray for him, and for his parents, as they deal with this medical emergency.

 

Sunday, February 10 2013 10:37 PM, CDT

As we are coming to the two appointments this week (tomorrow and Tuesday) that will culminate in surgery on Wednesday to put the skin flap in place over the exposed cartilage on Paul's ear, I am finding myself eager to have prayer bathing this. It springs largely from a logistical standpoint; if surgery doesn't happen on Wednesday I don't know when it would. Dr. Walsh had mentioned Friday as an alternative, though it could be he wouldn't be able to get on the OR schedule at HCMC (which would lead to other issues)...and that would be on top of the nightmare of logistics it would be for me with co-op that day.

So, please pray that all will look "just right" tomorrow, and all that needs doing be done during the appointment. Pray that the skin flap will look fine Tuesday morning at the quick check Dr. Walsh wants. And pray that all the logistics for Wednesday would indeed work out.

 

Tuesday, February 05 2013 7:28 PM, CDT

Now to unravel that.

It made me a little nervous when Dr. Walsh said, "Let's go into the conference room," before he got into the details of what had developed during surgery. He did start talking as we walked there, explaining that when he'd taken a good look at Paul's ear where it was not healed he discerned that it was exposed cartilage. That discovery meant he needed to change his plan completely, as exposed cartilage must be covered! He drew a diagram of Paul's ear to show me where the scar lines and such were, and why he did what he did, what he is planning to do next.

Dr. Walsh's best guess is that the skin that covered this particular area from the last reconstructive surgery was weaker and broke down over time. It had looked fine during and right after surgery, and as far as I and Paul know, he'd not done anything to cause injury...so the reason for this happening is still a mystery to us. Anyway, once the skin broke down the cartilage was exposed, and that obviously needed to be dealt with.

I should say "needs to be dealt with", as what Dr. Walsh did today is merely preparation for dealing with it. He chose to create a flap right in front of Paul's ear, to have skin to "flip up" over the exposed cartilage to cover it. He called it a "delayed flap", as he made several incisions but left three areas of skin intact for blood flow over the next five or six days. On Monday, during Paul's post-op visit (already scheduled, now with a somewhat different intent and a time adjustment!), Dr. Walsh will finish cutting the flap free. He wants to see Paul again the next day to assess the flap's condition; if it looks good he will have Paul in surgery on Wednesday to move the flap to cover the cartilage. If it doesn't, ... well, he didn't really say what he'd do in that case. I would guess he doesn't know for certain, he'd have to decide at that point.

So, the bad news is that this wasn't an easy fix, we'll have a longer delay before the clock starts again for the next major ear surgery. We must get through this piece and see complete healing before taking that next step.

My first thought, as soon as Dr. Walsh mentioned needing another surgery next week, presuming that all goes well with the flap over these several days, was, "More time off work--Paul is not going to like that." And I cringed inwardly at the thought of having to deliver this news to him, as I expected he'd be upset and would express his dismay toward me--not blaming me, but letting loose his feelings because I am a safe person to speak to--and I would be struggling to remember he's not angry with me, I'm just "in the way" as he processes his emotions about this. I am tired, emotionally; it has been a long seventeen, nearly eighteen, months, and I don't have much reserve left to cope with things. As we talked, Dr. Walsh expressed willingness to give Paul the news (to which I queried, "Would he be awake enough to get it?", and Dr. Walsh sort of grinned, as if to say, "Probably not."). I expected that I would have to reiterate things, and I didn't mind that, it was the initial announcing the news that I didn't want to have to handle.

Not unexpectedly, then, even though Dr. Walsh talked with Paul in the recovery room I did have to review it with him when we were down in the second-stage recovery area. I am encouraged that Paul is accepting of the way things went, even if he's not thrilled by the thought of more surgery next week.

As already indicated, the plan is in place for the clinic appointments next week on Monday and Tuesday, followed by surgery on Wednesday if all looks well with the flap. Dr. Walsh and I discussed those appointments, and he was going to address booking the OR, and have his nurse call me to confirm everything. The clinic appointments are easy enough to deal with, though I will have to juggle a bit for the Tuesday one; it was knowing when the surgery would be (Wednesday or Friday, the other day he suggested if he couldn't get an OR booked for Wednesday) so I could plan for the children...Dr. Walsh said he wanted to get that settled as soon as possible so he'd know his schedule. The nurse called as we were traveling down to the surgery admission area (from where we'd leave), and I couldn't get to my phone fast enough, so I called back a bit later and got all the dates on my calendar.

Here are some prayer points:

Pray that the flap will stay healthy and alive, especially after Dr. Walsh finishes cutting it free on Monday. Due to the scar lines, there is potential that blood flow won't be sufficient, causing the skin to die. That's one of the challenges Dr. Walsh faces in reconstructing Paul's ear, the scarring from the accident.

Pray that everything looks good on Tuesday when we see Dr. Walsh for a quick check on the state of the flap, so surgery is a go-ahead for the next day.

Praise God that a friend has already volunteered to have our children on Wednesday while we are at the hospital, especially since it's a church night! Our two will simply go along with her family. Having that offered so quickly, the moment I told what had developed, was such a gift and blessing to me! We will have some logistics to work out, but those will all fall into place.

Pray that everything will indeed work out well for Wednesday--the flap, the children, all the details. In addition, pray for the bit of logistical maneuvering I will have to do for Tuesday morning, to accommodate a regular activity for me and the children with this appointment for Paul. I think it will work out fairly easily, but I need to think it through.

And praise God that, in light of this development, it has turned out that Paul won't need to take more time off work! In fact, by God's good grace, Dr. Walsh said that Paul should still take off tomorrow (which we'd originally planned) and then could work Thursday, Friday, and Saturday. And he may work Tuesday of next week as well. He will need to take off Wednesday and Thursday for this next surgery, but the fact that he may work these days we thought he would have to be off certainly sweetened the deal. Paul still needs to deal with this change in time off, which he will do tomorrow, and he does need to protect the area, but we've that under control (Dr. Walsh outlined what to do for me, and I'll be seeing to it).

So, though this has taken a different twist and things may still turn in unexpected directions, it has been a positive day and I rest in the reality that God is in complete control. I'm trusting and praying hard for the health of this flap and for it to "take" perfectly next week, so there is full healing and we will be able to move ahead with the reconstructive process. I am so thankful for all who join us in praying, and for this means of keeping you informed of what is happening, both the positive and the not so positive (and this falls into that category).

Oh, yes, would you pray that Paul recovers quickly from the impact of sedation? He's been surprised by how much harder it has hit him this time, and that gives him a bit of pause for next week, anticipating that he'll have another rough time after sedation. I trust that resting tonight and taking it easy tomorrow will have him feeling much better!

 

Tuesday, February 05 2013 7:31 AM, CDT

We're down to hours before Paul's surgery today. The children's assignments are ready, their books and such are packed (or will be packed soon), the framework for the day is in place and we will see how it all plays out.

Mainly, here, I wish to ask that you join us in praying for our great Healer God to be in constant attendance through Paul's surgery--directing every hand and every movement of each person involved in the surgery, directing even every thought! Dr. Walsh, of course, is primary, and we earnestly desire that God will direct his hands, yet there are so many others who will be involved in one way or another, from the person who checks him in, to the nurse who prepares him for surgery (starts the IV and so on), to everyone in the OR helping with the surgery...May God guide every hand and be standing at the head of the table throughout, watching over His child.

(That last was my vision when Paul and I prayed earlier.)

 

Thursday, January 29, 2013 1:38 PM, CDT

A brief update about the "touch-up" ear surgery:

I spoke with Theresa a short while ago. She said that it looks promising to have the February 5th date...she needs to check once again with Dr. Walsh. She planned to page him as soon as we ended our conversation, and hoped that he would get back to her before the end of the day, so she could get back to me and confirm.

I told her that this area that is of concern has continued to drip fluid since Paul saw Dr. Walsh a couple weeks ago. That information brought a "the surgery should be sooner" and I expect she will relay it to Dr. Walsh.

Please be praying for this! February 5th is a week from today, and there'd be logistical matters to work out, particularly for two precious persons named Emily and Samuel. Pray that Dr. Walsh get back to Theresa in a timely manner, and for her to connect with me as soon as possible after that. Paul's pre-op physical is scheduled for Monday and that is fine. It'll simply be everything for Tuesday if the surgery happens that day--children, school, time to check in, all that sort of thing. I trust that God has it fully in control, and all the pieces will come together...even if I don't know how yet. Pray I would be calm and take the necessary steps at the necessary times, and rest in God's covering.

 

Thursday, January 17, 2013 2:08 PM, CDT

A pleasing development

Yesterday Paul told me that his work hours would be changing slightly in February: He will begin working at 12:00 (noon) and get off at 8:30, meaning that he will put in two hours on tour 2 and six hours on tour 3. This will start on February 1. Presuming all goes well over a few weeks on this schedule, Paul would then have another adjustment to his work hours...bringing him fully back onto tour 3, where he would be working 2-10:30 pm as he was before the accident!

This is at once pleasing and a bit unsettling. It's pleasing because it's been a long haul with Paul being in the hospital, first, and then home but not cleared to go back to work, then back part-time, and finally cleared to resume full-time work...and then having work hours that spanned two tours, to help ease him back into the job. It's pleasing, too, as it's being done in a step-by-step manner, to ensure that everything goes well in this process, for all concerned. So I am thrilled with this.

At the same time I am also a bit unsettled. Not that he's easing back onto tour 3--that's what we were used to. Rather, it means that we've some more adjustments along the way here, and we've certainly had plenty of those over the last seventeen months. The children and I had to suddenly adjust to daily living without Paul during the three months he was in the hospital. Then we had to adjust to life with him at home 24/7, during the phase of outpatient therapy. Then there was the period where he worked part-time, which was fairly short. Now we've been accustomed to a certain rhythm of life with his 10:00 a.m. - 6:30 p.m. hours. Oh, and I mustn't forget that there have been surgeries and other things in here for Paul, and then simply our life with homeschooling and other activities...nothing that is not typical of family life. It's really, "Another shift, Lord?" tiredly asked. And I'm really not dismayed by it, I'm more, "All right, Lord, here's another shift, help me wrap my thoughts around this and how it will affect our present routine. What will be most affected, and how do I manage it?"

I've also realized that even if Paul's accident had never happened, if we'd never had this series of changes, we would still be adjusting things every now and then because our children are growing older. That has its own impact on our routine, as their abilities change, and their activities change, and the family schedule, or the homeschool routine, needs to be altered to accommodate! This newest work schedule change for Paul means that he will be present for more of our schooling time, which opens the door for him to participate more fully than he has been able to do up to now, as he would leave about the time we started our school time. And this is how it was before the accident, when he was around for the whole of school time (save read-alouds, which we did in the evening, and he would be at work most nights when that happened). We're heading back toward that, and I am delighted! God has been and is so good to us!

 

 

Tuesday, January 15, 2013 5:10 PM, CDT

Hitting a "leetle" bump in the road ...

... the road of ear reconstruction surgery, I mean. Yesterday we saw Dr. Walsh for the one-month follow-up to see how his ear was healing, in order to determine if the countdown to the next surgery could begin again. Answer: No. Here's why, or what's going on.

Over this past month Paul has observed a few instances of fluid trickling down the side of his face, from his ear. He noticed that there was an area that was particularly sensitive, and Samuel would say that it looked like there was a split there, near the top of his ear. I didn't really get a good look at it, but I could see the spot that was of concern. Paul was faithful to keep vaseline on the ear consistently, and all the rest looked good. Dr. Walsh concurred with that.

The one spot that was as yet unhealed mystified Dr. Walsh! He took a careful look at it and admitted that he didn't quite know what was going on; it could be a cyst, he said, but he really didn't know for sure. He gave it as thorough a cleaning as he could, to try to drain the fluid that he tapped as he examined it. Then he said that the only way he will really be able to see what's causing it is to have Paul into the OR and "peel back" the layer, see what's going on, and repair it. He expects that he'll need to do a tiny additional skin graft to this area once he's cleaned up whatever is going on.

Sooooo...we are on the schedule for surgery, for what I am referring to as a "touch-up" surgery. This is NOT the next surgery in the reconstructive process; it is an extra one, to deal with a glitch along the way. As Dr. Walsh explained, it's wisest to figure this out and have it corrected and well healed before doing the next surgery, which would be to construct the outer upper ear (I hope that makes sense!). If he left this alone there's the chance that the next surgery could hinder blood flow to this area, and it could cause more problems. Once this surgery is done and Paul is fully healed we'd set the clock going to the next reconstructive surgery.

Now things get a little wacky. In the process of scheduling Theresa gave me some different dates. First, she said, she has us down on the schedule for March 5. My first reaction to that was, "That's further out than I expected, in light of the impression I had from Dr. Walsh." Then Theresa went on to say that there's a possibility that we could be squeezed into Dr. Walsh's surgery schedule this coming Tuesday! And then as she and I continued talking we decided that that was just too soon with all the pieces that would have to happen, so we took that date off the table and moved on to the next possible date, which was three weeks out as Dr. Walsh had said to book...which would be February 5.

At the moment Paul is on the surgery schedule for both February 5 and March 5 (and on my calendar for both those dates as well), pending which one will work out best. Theresa hopes to have some definite input from Dr. Walsh by this Friday so she'd be able to let me know which date we will have to go with. I looked at the calendar while we were talking, as one issue is getting a pre-op physical for Paul. That has to be within thirty days of surgery, and I wanted to see if we could find one date that would be within thirty days of both dates. If my counting is correct, February 4 fits that bill! It's a day before February 5, and twenty-nine days before March 5, so...I wouldn't have to reschedule his pre-op physical.

Please pray that the best surgery date work out. I favor the February date, to have this done and keep us moving more or less actively toward the next reconstructive surgery. The clock to that is still on hold, pending this surgery and the attendant healing, but we'd still be heading in that direction. I also fear that whatever this is would heal and be harder to deal with if we must wait till March, not to mention that it'd delay the reconstruction surgery timeline even more. God is sovereign over this, and I'll trust him to direct it all. Dr. Walsh indicated that this would be a day surgery, Paul would go home after it, and Theresa relayed that the block of time for Paul is two hours (though the surgery could be shorter or longer, there's just no knowing till he gets in there). That is a relatively minor detail; the surgery will take as long as it takes, as Dr. Walsh has said about the other surgeries.

In addition to the surgery date, pray that the other logistical matters would settle out--in particular, care for the children while I and Paul are at the hospital. That's always a most challenging piece for me.

 

Tuesday, January 8, 2013 10:37 AM, CDT

It has been about three weeks now since Paul began driving again, and he is regaining confidence. I have found myself smiling (to myself) a number of times as I have watched him enjoy this restored privilege, as I've said to myself, "Come Sunday he is going to want to drive to church." And sure enough, when I came out to the car Paul was asking, "Am I driving?" I drove to church, but handed off to him for the trip home, and I expect that more and more when we go somewhere (either he and I or our whole family) Paul will drive. He is more cautious now, allowing extra space between himself and the vehicle ahead on the road, looking not twice before changing lanes but three or four times to be sure he's not missed noticing anything he ought to notice. It may be that I will do more of the night driving, as I am more accustomed to that, and he is still mastering night driving with vision limitations. Fortunately, there aren't a lot of those occasions, and he drives home from work after dark, so he is getting practice.

As we've come through this period with the driving evaluation Paul has faced the fact that the eye surgery he had in the summer did NOT restore his vision as he had expected it to. He's disappointed by that, and somewhat frustrated, and also quite apologetic to me--though he had known of my vision limitations he didn't quite get why certain things were more difficult for me until now, when he has similar limitations. We had decided a few months ago to put any further eye surgery on indefinite hold, in response to Paul's beginning realization that his vision would not be restored to its pre-accident state. As he puts it, why have more surgery when it won't restore my vision?

Partly as a consequence of that decision about further surgery, we chose to go to my ophthalmology clinic for his eye exam and to get new glasses. I couldn't recall who he'd seen shortly before his accident, so I took the first available appointment that worked with his schedule--which was last Monday. Dr. Dewan wrote Paul a new prescription for glasses, but also recommended that he see another ophthalmologist there who specializes in strabismus-related conditions, to see if he had any recommendations for Paul to help him with visual challenges.

By God's grace, we were able to get in to see Dr. Hasan this past Saturday, and his evaluation added to Paul's accepting that, barring a miracle (and God could certainly do one!) his vision "is what it is" and he has to learn how to manage effectively within those constraints. Would you pray, please, that he will find ways to cope well, and give himself credit that he IS able, and is capable of learning, to cope? I feel that he judges himself harshly, that he looks at me and how I manage, and puts pressure on himself to be doing as well as I...and doesn't bear in mind that I have grown into this state over many years while he has been suddenly slapped with it. 

Dr. Hasan suggested that Paul try a temporary, stick-on refractive prism, to see how he liked it, if it helped him. This would help to bring the image Paul perceives with the left eye closer to the image he gets with his right eye, though it wouldn't bring them completely together. In fact, Dr. Hasan explained, the amount of refraction Paul needs couldn't be completely achieved in a lens, as it would make the lens far too thick to be wearable. That fact played a large role in Paul's deciding that he would forego the temporary prism patch and utilize other measures to manage the misaligned images. In essence, he will focus on using the images and information from his right eye, and keep praying and hoping that God does do a miracle of healing to his left eye. Please join us in that--pray for a miracle, and pray that Paul will keep trusting God regardless of the answer. 

 

Tuesday, December 18, 2012 10:37 AM, CDT

Paul drove to work today!

During the driving lesson yesterday Aida had Paul drive down to the post office and back. I don't know what else happened during the meeting; I only have the bits that Paul has relayed to me, that Aida gave him the clear to drive, though she seemed to favor his using "the back way" initially (she'd been more positive about his driving as they came back from the post office a different way).

For one brief moment, when Aida called to say she was going to be later, I could see Paul ready to blow, before he understood that she was still coming, that it'd be about an hour later than originally planned. I was actually pleased that the driving lesson would be after dark, as that was one observation from the clinical assessment, and I know that night driving is harder when there are visual limitations such as I have and Paul now has. "All things work together for good...."

I was much heartened as Paul and I discussed the driving issue yesterday, before the lesson; he indicated that he had suddenly had understood that a big piece of this was SAFETY--safety for him driving, and safety for others! Oh, he cannot control how others drive, but he recognized that if he were driving when he was not deemed a safe driver there could be major ramifications, especially if he were involved in an accident. That helped me feel much more at peace, that he finally realized that this whole process has not been to unduly restrain him but to ensure that he is capable and safe, and has the skills and tools that will aid him in being capable and safe. Even so I admit that I will not rest easy for these first few days that he's driving again until he is home safe and sound, without incident!

As I've thought about Paul driving again I have come to the conclusion that as he does so he will quickly regain confidence and expertise. I think that is simply a reality across the board: The more he does things, the more adept at them he will become. For a season it may take him longer to do things, or he may have to think more consciously about the steps to take. I believe and pray that this will be a temporary circumstance (and it may be a long temporary, longer than he'd like, or I'd like) and as he does things he will have new pathways to information opened, so the tasks that now demand more of him will become easier, more automatic. I think we fail to realize how many of our daily lives have become automatic to us until something happens and we have to think hard as we do things. That can be exhausting.

So, Paul drove to work today. It's still a bit weird to look out the window and see the car gone, as it's been such a long time that I've been the only driver and I'm obviously still at home! I realized as I started writing this update that today is December 18th, and Paul's accident was August 18, 2011 ... so it's been exactly sixteen months since he last drove! 

 

Monday, December 10, 2012 11:20 PM, CDT

Well, it has been a rough day around here. Coming into this day we had an appointment with Dr. Walsh (for him to see how Paul's ear was healing after the scab removal last Monday) and the driving assessment. The doctor's appointment went well; it's looking much better than last week, Paul had been more diligent about keeping it moist with the ointment (vaseline) and must continue to do so. We will see Dr. Walsh again in about a month, in January, and if it's fully healed he said we will start the clock ticking toward the next surgery. He was very definite that keeping the wound moist is ESSENTIAL, Paul must be diligent about that, if he is not it'll be devastating (I infer that to mean the graft would not take and there'd be more challenge involved throughout the remainder of the reconstruction process, which would be disappointing after all the work and time that's gone into this so far).

It was encouraging to visit the ENT clinic at HCMC today rather than the Parkside clinic where we've been going more often of late, as it's been a good while since we were there, so that clinic staff hadn't seen how things were looking for quite some time. The nurse was very favorably impressed, as was a resident who works with Dr. Walsh. Paul was pleasantly surprised by that reaction.
 
That was a good thing from today. Much else that happened was not so good, it's why I am feeling worn and disheartened. It's truly not even all that bad, just thing piled on thing and seeming to crush me under the weight of it all. First, Paul's driving assessment happened today as planned. The time was shifted back about half an hour, which ended up being advantageous to us due to another issue. Aida (pronounced Ida) Webber did the assessment. She began with a clinical assessment, testing vision and ability to multitask and so on, and then did the actual driving evaluation. Overall Paul passed the clinical assessment well; in most areas he surpassed the score they look for. Only in one was he right on the borderline.
 
Aida's final evaluation was that Paul is general capable of driving safely, but her recommendation is that he would benefit from one or two driving lessons to ensure that he can handle certain situations successfully. She hopes that we could get everything into one session, as these sessions do cost money; she would try to do so. We've said yes to having her come to us (which she will do for the driving lesson) and must call tomorrow to set the time. Please pray that we'll find a time that works for her and for us, and that we'll figure out how to pay for this lesson (and maybe for a second lesson if necessary).
 
The downside of this is that for at least another week Paul is not free to drive as he'd hoped. And that is where one of the other matters that popped up today comes in. Yesterday when we were leaving for church I pulled the van out of the driveway, and the oil light came on ... and stayed on! I remarked on that, and then Paul observed that there was a trail of oil from where the van had been parked down the driveway to where the van was now sitting. We started putting in some oil, and then I said we didn't have time, Emily and I were due in the nursery, and we were running late already! Because of the snow that was continuing all afternoon we didn't do anything further about the van, but Paul kept thinking about it, and sort of out of the blue this morning began pressing me to squeeze a trip to an auto service shop we've used before. Well, with the doctor's appointment, and the driving assessment, and needing to fit school in, I wasn't thrilled to have a sort of monkey wrench thrown into the mix. I am, simply, weary from so much strain for so many months, and one more thing when I have mentally blocked out how the day will look can push me over the edge to active crabbiness. Then I grumble and it spills over and soon the whole family is crabby and snapping at one another, and hurt is piling up.
 
By God's grace we did get the van over to Sandberg's, and we were on our way to the driving assessment in a timely manner. On our way home, after making another stop that was on the way and met a need Paul had (a new winter jacket so he could retire the one with a badly ripped pocket to being a backup) he suggested swinging by Sandberg's to see if the van was ready. I agreed, as it made sense and would only add a few minutes and a little distance to our outing. When we were almost there I glanced at the dashboard clock and remarked that the owner had said he likely would close at 4:00 or 4:30, due to the road conditions. It was 4:31, but we went there anyway...they were closed, so ... we came home. I came in after Paul and the children, and felt that I'd barely set foot inside the house, hadn't even removed my jacket, and Paul was "on me", saying, "We need to call that place." I answered, "What place?" and then replied to his response, "Was there a message?" Paul said he'd not checked, and I lost it a little, and we had a round of frustration.
 
It turned out that Sandberg's had called twice while we were gone. The first message asked that we call, the second repeated that request, but there was no indication of what might be going on with the van. And, since they were closed by this time, we couldn't call and find out!
 
Well, then, the next wrinkle that came in was a meeting tomorrow morning at 8:00, pertaining to a family matter. When I brought that to Paul he didn't hear all the time options I presented, so we had yet another go-round of hurting feelings. So, now, we have the disappointment related to the driving assessment, the van is needing something, we need to call Sandberg's about that, and Aida about the driving lesson, the car is also seeming to be in need of servicing, we all need to eat (Samuel in particular, as he has Cub scouts and will need to leave soon), I need to get back to someone about the meeting (what time will work best for us) ... all in all, just too much. Please pray that I will rest all this at the foot of the cross and will see all the pieces fit together. I am weary, sinking with discouragement, and very much in need of prayer. We are very much in need of prayer, and I am heartened that the Father has blessed us with a body that stands in the gap for us when we are stumbling and not well able to hold on ourselves. I cannot see yet how this will work out, but I am confident in the One who does, and I will rest there tonight and see what happens tomorrow.
 
I'll close with a line or two from a new song by Casting Crowns that I've been hearing for the last week or so (as best I recall it now):
 
When I'm lost in the mystery/To you my future is a memory/Cause you're already there/You're already there/Standing at the end of my life/Waiting on the other side/You're already there/You're already there
 
That's where I am tonight, resting in the One who's "already there." He has all of this in his hands, and me and Paul and our children.
 

 

Friday, December 07, 2012 10:51 PM, CDT

I have wanted to share some prayer concerns here for a while, but have not managed to sit down to write till now. Sometimes it's because the day vanishes and time to think and type those thoughts goes missing, other times it's more because my thinking ability goes missing! Thankfully that is usually a temporary event and I recover it. Anyway....

There are two main things I would appreciate prayer about. First, Monday afternoon Paul is taking a driving assessment. This is something that had been recommended by the neurosurgeon way back in the spring, but it wasn't something that Paul seemed inclined to pursue at that point, so I let it rest. After he started back to work, and especially as we moved into fall and toward winter Paul began to speak about it more, thinking ahead to cold, snowy weather when riding his bike would NOT be enjoyable. Initially I would respond that I could juggle our day to accommodate taking him to work and picking him up, that I would make it work out and would be glad to do so. I pointed out that he could walk the few blocks on either end of the light rail line and take the train most of the way, so he'd not be out in the wind and cold for all that long. Usually he replied that he didn't want to be a bother to me, taking me away from other things that I needed to do, and we sort of let it be. He was riding to and from work, occasionally I would drive him or pick him up. Finally, though, as we made the decision to stop pursuing eye surgery (in part because Dr. Silbert had said that the surgery would not restore visual field or movement, it would simply make his eye look more normal and have both of them tracking together a little better) we also moved ahead on having a driving assessment.

The purpose of this assessment is to discern Paul's safe driving ability. He is still licensed to drive, but the question is how safely will he do so? I believe once he understood that distinction he was more amenable to it. At least he accepted it. So I went ahead and scheduled it, and now it's nearly upon us.

There are several things I would ask prayer for. First, I am a bit (a big bit) nervous about this. I'll admit it's been rather nice to be the only driver in the family, to have that bit more control over the vehicles, and over who goes where when, if driving is involved. It's been hard, too. So pray that I will cheerily accept the outcome of this assessment, especially if it's that Paul will do well with driving.

Also, I am nervous about how he will do with perception of distance and depth, which is one of the main challenges he faces in relation to his vision limitation. I know very well how difficult it can be to judge such things when you are lacking binocular vision, and I have had YEARS to learn how to compensate for it. He's only had months, and that is perhaps one of the biggest areas he will struggle with in this. So please pray that he'd do well in this area.

Even more than praying I accept whatever the outcome is cheerily, pray that PAUL will. If it's positive you might hear him cheering clear from Golden Valley. If it's not, there will be a good bit of frustration that he has been refused this measure of freedom and independence, and he will need an extra measure of grace to accept the limit.

Pray that I will make the right decision about which vehicle to drive when we go for the assessment. Paul has voted that it be the car, which is smaller and would be more easily handled. I incline to the minivan because it is larger. My reasoning is that if he's able to pass the assessment in the minivan he'd be well able to do so in the car!

Pray also that the weather and road conditions would be right. Having this snow right now is not making Paul very happy about having to do the assessment, yet again, it'll give the evaluator a better sense of how safely he can drive, how well he will handle various situations.

The second prayer concern is for our family as we continue this journey of recovery and adjustment. A good deal of the physiological recovery is done, though there are still a couple ear surgeries to go, and Paul is hopeful that there is some God-given healing to his left eye (which is not what Dr. Silbert led us to expect at this point). My sense is that we have moved into what I call the "soft" phase of recovery, where we as a family are learning how to cope with the changes that the TBI has wrought in Paul and, consequently, in each one of us and in each relationship within the family. Because it involves the whole family, each individual, I feel less freedom to give lots of detail. What I will do instead is ask that you pray for each one of us as individuals and for all the various relationships within the family. I think there are at least twenty pairings, and all of them are affected by this. Pray, too, that we would be guided well in what to do and how best to cope with these things. Pray also that we'd be guarded and guard well against Satan's attacks in this.

One last note, a followup on Paul's most recent ear surgery: He saw Dr. Walsh this past Monday, to observe how the healing is going. Dr. Walsh removed some scabbing that was hampering the healing and explained why it is so important to keep the wound coated with ointment. During healing the new skin is growing across the wound from the edges. If it encounters a scab it can't progress as well. It IS healing, just more slowly, so Dr. Walsh instructed Paul to be more diligent, especially during the day at work, to keep a light layer of ointment on it, to keep it moist so the new skin can grow more rapidly. Paul is to see him again Monday morning for another check on how the healing is going. Dr. Walsh said, as well, that until this is fully healed he will not start the clock ticking on the countdown to the next surgery. He keeps a minimum of three months between surgeries, and that three months will begin when this is healed. In other words, it won't be counting from the date of the surgery, which was in early November. At this point I would guess that the soonest the next ear surgery will happen will be March, probably more the middle to the end of the month to allow for the healing to be complete, but that's just my educated guess! Time will tell how accurate it is.

 

 

Thursday, November 22, 2012 11:47 PM, CDT

It is Thanksgiving day, so I am finding my thoughts going in the direction of "give thanks for ALL things," which is not easy when so many things are hard, or have been hard, when we are still in the midst of the journey and struggling to understand and trust and accept.  Simply starting to list through things that I am thankful for--starting even with the harder things--helps to turn my thoughts in the right direction and I end up praising God for grace, and sight, and for how far we've come and how it all honors him!

That's my backdrop for today.  I'll start with Paul's ear.  We saw Dr. Walsh for a post-op check on November 12; he was pleased with how things looked.  He removed the bolster (and to my surprise it was not replaced) and the stitches, and directed that we continue with the ointment (we'd moved to vaseline after three days of using bacitracin zinc) until the next appointment, which was scheduled for December 3.  At that point the graft looked good, yet Dr. Walsh said that it was still possible that it wouldn't take.  So we are watching it closely, as closely as possible, and doing our best to keep it well coated with ointment.  This morning Paul was fingering it and asked what it was he was feeling; it looked like he'd possibly rubbed at it a bit much, so I cautioned him to not fiddle around the area, coated it well, and will keep watch.  Dr. Walsh had said that there might be an edge that didn't take, but that skin from the other side would likely grow in and replace it.  I am hoping and praying that the combination of plenty of ointment and not touching it will bring improvement by evening; if necessary we'll give Dr. Walsh a call this evening to consult him, though he'd probably need to see Paul to tell us with any certainty what is happening.  Please pray that the graft will hold and heal!

 

After some consideration Paul and I agreed that we would put any further eye appointments and surgeries on hold.  Several things went into that decision.  First, Dr. Silbert had said over several appointments that the surgeries he was doing would not restore the visual field as Paul expected and desired that it would; Paul missed that initially, but once he grasped it he voiced reluctance to have any more surgery on his eye.  Since that one I have more and more felt that further surgeries just aren't best for him (or us).  While we are not ruling out resuming the process (Dr. Silbert said that one more surgery to do additional straightening/aligning of Paul's eye was needed) it seems that now is not the time to pursue this.  Paul also feels that something is happening, and would like to give it time, so we've cancelled the appointment we had scheduled with Dr. Silbert and will simply wait and see when or if we should make another appointment.

 

Another factor that played into canceling that appointment with Dr. Silbert was opening up time for Paul to have a driving assessment done at Courage Center.  This is something that Dr. Roehr had advised we do before Paul took to the wheel again.  We'd put it off pending the completion of eye surgeries, as Paul had had the idea that once the surgeries were done his visual limitations would be gone!  I had let it drift, as Paul was riding his bike and there didn't seem to be much urgency to getting it done.  Well, over the last few weeks Paul has talked more and more about how awful it is going to be biking to and from work when it's cold and snowy, so he really wants to be able to drive.  I have sought to remind him that he does have alternatives:  there's the light rail, though he would have to walk some six or so blocks (I think) between it and home or the post office; or I could fit driving him to and from work into our day's routine.  Anyway, as it became more pressing I did my best to investigate it, and have been trying to get the pieces into place.  Frustratingly for both of us (in different ways) there were no appointments available for the driving assessment--which is a three hour process that includes me being there for the report on how he did and if he would be able to drive safely--until December 10.  He's frustrated that I didn't get on this, or that he didn't push on it, so it could be done sooner, and I'm frustrated because he seems dissatisfied with any effort I make when it doesn't happen as fast as he wants, or when he wants.  I end up feeling that no matter how much I try I fall short--either I don't recognize how important something is, or I do but what I am able to work out falls short of his expectations.  I do my best, but the reality is that not all the details are within my control.  Please pray that he would trust that God is behind it all, even when I've blundered and not moved as quickly as he'd like, that the timing of appointments is from God, that though we don't see why we must wait HE does, and we need to trust his timing.  Pray, too, that Paul would understand that raking me for falling short doesn't help motivate me to keep trying.

 

I believe that not getting this driving assessment until now, until December 10, is God's timing.  I don't understand why; to my short human vision it seems out of sync since the weather is growing colder and Paul being able to drive to and from work makes sense.  I simply pray that Paul will relax, will accept and allow my serving him by driving him to and from for a few weeks if needed.  And I pray that whatever the outcome of the driving assessment both of us will accept and abide by it!

 

Those are the practical points of this update.  I also want to speak of what I am calling the softer side, or the soft part of Paul's recovery from a TBI.  Recently my sense has been that we've moved largely from the "hard" side of recovery--the physical recovery, the surgeries, that sort of stuff--to the "soft" side--the impact this accident has had on Paul himself, and on our family, on the various relationships within the family, all the things that cannot be seen but which are felt and color how we view this whole journey.  Of late I have observed that Paul is recognizing more and more that the accident has left permanent changes, and he's finding ways to cope with them.  This involves all of us more, as we're all adjusting to the new "who" Paul is, and each one of us.  Changes in one person in a family forces change in the other members, willing or unwilling.  God is working with us in this, and I am encouraged by that, encouraged by what I am seeing, yet I know that we've challenging days ahead as we continue through this.  That is my hope:  We will come THROUGH this, it's part of the journey God has ordained for us individually and as a family.  He has purpose in it, and we will come through, not be left in the middle.  I cited the line, "When you can't see his hand, trust his heart," to Paul this morning; he replied with, "Trust and obey, for there's no other way to be happy in Jesus but to trust and obey."  He added that obeying is harder than trusting!  I think both are hard, but I found myself agreeing that obeying may be harder.  Please pray for wisdom for us as we navigate this portion of the journey.

 

I want to close this update with some verses from Psalm 100 that sang through my mind this morning.  "Know that the LORD, he is God!  It is he who made us, and we are his; we are his people, and the sheep of his pasture.  Enter his gates with thanksgiving, and his courts with praise!  Give thanks to him, bless [praise] his name!  For the LORD is good; his steadfast love endures forever, and his faithfulness to all generations."  He is good, he is God, and the call is not to give thanks only for the good things, or in the good times, but in all times and for all things that he allows to come to us.  For he sees the end from the beginning, he sees the bigger picture we miss, and all this darkness will allow the beauty to shine more brightly.
 
Happy Thanksgiving!

 

Tuesday, November 06, 2012 11:03 PM, CDT

Paul's surgery went well! It ended up being an hour earlier than I had had stuck in my head, so when we had the call yesterday to confirm the surgery time and when to check in I was caught a little by surprise that it was surgery at 11:00 with check in at 9:30. Definitely, then, Paul and I had to be up and ready to go vote RIGHT AWAY at 7:00 a.m., as soon as the polls opened! We were, we did, and though it was about half an hour in line we were in and out shortly after 7:30 and back home to finish getting ready to go to HCMC...after dropping our younger two at a friend's for the day.

By God's grace, we were right on time for check in. I had no trouble finding the parking ramp (thank you, map); the only trouble was finding an empty spot, but God graciously had someone leaving just as we came past, so I backed up and we took that spot. And the parking fee at the end of the day, with the discount, was quite reasonable, right in line with what we'd have paid for the light rail if we'd taken that (which we wouldn't have for this event).

The surgery itself started right about on time, actually a little before 11:00 (10:53 according to the monitor in the waiting room). I was thankful that I was able to go upstairs to the main surgery waiting room rather than staying down at the Surgery and Procedure Center as I had during Paul's eye surgery. It is NOT as nice to sit there for two hours, and since I was expecting a minimum of three hours in the waiting room I really hoped and prayed to be upstairs in that more pleasant waiting room. I could've done without the slightly rowdier family who came in perhaps an hour or two before Paul was ready to go back downstairs for the final stage of recovery before discharge, but all in all, it was good.

It did run slightly longer than Dr. Walsh's anticipated time--perhaps twenty minutes. In the grand scheme of things that is negligible, and I wasn't bothered by it. Dr. Walsh came to talk with me as soon as the surgery was done, and he was again very pleased with how it had gone. Paul's earlobe is now in proper position, though it is hard to see past the bolster that is in his ear, and the black stitches, and the gunk and junk around it. The bolster is packing that is helping hold the earlobe and skin graft in position; it will remain in place till Paul sees Dr. Walsh on Monday. Dr. Walsh also left a drainage area open just under the earlobe, since he didn't want any fluids or blood to back up behind the skin graft, so we're keeping a dressing under that spot to absorb any blood or fluid that drains out. I, of course, have the task of keeping the drainage cleaned up, and ointment on the earlobe and bolster (the moisture aids in the healing, and also serves as a seal to protect the site). Until the post-op appointment Paul may NOT get the ear area or the graft donor site wet, so ... he must figure a way to manage this challenge. I think we have ideas in mind that will work, but he will be very glad to have the restriction lifted!

All went well with this until the final half hour or so, just before Paul was officially discharged. Dr. Walsh had ordered bacitracin zinc ointment for keeping things moist, and an antibiotic, and pain medication. PAC (and I am not sure what that stands for, perhaps Post-Anesthesia Center?) was sending the prescriptions down to HCMC Pharmacy to have them filled so I could just pick them up and take them home, no hassles or having to go elsewhere on our way home. Well, it turned into a mess of poor communication and timing delays. Paul's discharge nurse, Heidi, had run through the prescriptions with me, and then called the pharmacy to see if they were ready. Pharmacy says they have them, and there's a copay, so I went over to pay and pick them up. I get there and am told that they're not ready yet, and they only had two of the three. This is ten minutes before that pharmacy closes, they're telling me there is no third prescription, and do I want them to cancel their filling of these two and have the nurse print out the order so I can take all three to a different pharmacy? Yes, I say, so that is put into motion and I go back to Heidi to ask for the hard copy...only to be told that Dr. Walsh would have to reorder them, and sign them, and he was doing another surgery! By this time I was so confused and frustrated, I was starting to cry, and just wanted to leave without the prescriptions (not a good idea). Bless them, Heidi and another nurse were diligent to help resolve this, and then yet another nurse came into the picture--Vicky, whom Heidi asked a question about getting the orders for me to take to Target Pharmacy. Once she'd heard the story Vicky announced that she would get the two from HCMC Pharmacy even though they were closed, and she marched off to do so! We simply stood and watched, and Heidi remarked that if anyone could do this Vicky would.

While we waited for Vicky to accomplish her mission Heidi and I went over things one more time. I had the prescription for the painkiller in hand, which I would have to take to Target Pharmacy (the bacitracin zinc and the antibiotic were the two that Vicky was getting). Somewhere in here Heidi asked if we had any pain medication like Percoset at home, and I realized that very likely we did from either Paul's last ear surgery, or his eye surgery. So we decided that if so Paul could use that this evening and if necessary I could take the Norco prescription over tomorrow. By God's grace, again, we found Percoset in Paul's bin at home, so he was able to use that for tonight. Whew! I was not looking forward to having to run to Target tonight...honestly, I was not looking forward to having to go there at all for a prescription. Too many times it seems I call it in, or have it sent from the clinic or hospital, and it's STILL not ready when I go to pick it up, even when it's well past when I've been told it will be ready.

I was very grateful for Heidi's and Vicky's and the other nurse's kindness to handle this glitch for me, especially since I had kind of had it by that point.

So, with all this discharge drama and delay, Paul and I walked out of the Surgery and Procedure Center about 5:30. We had a bit of a time getting back to our vehicle, but we succeeded after some back-and-forthing to find the right door, and level, and path. Arrived home, called our friends to say we were home so they could bring our children home, and actually ended our day in more or less normal fashion with read-alouds and Bible and prayer before wrapping the day...and I am ready to wrap it myself now.

Our thanks for all the prayers that covered this day for us. God's blessing to each of you!

 

 Saturday, November 03, 2012 5:23 PM, CDT

I expect that the next entry here will be to share how things went with Paul's surgery, coming up on Tuesday. Today I simply desire to recap the plan for that day, and ask for some extra prayer.

In light of the fact that it is election day, Paul and I will hustle off to our polling place first thing in the morning, to get our voting out of the way before we must drop the children at a friend's and get to the hospital for check-in. ** Pray that I'd have things ready for us to vote fully; I have sample ballots and want to make notes on things to facilitate our actual voting. ** Pray that we'd indeed get in and out rapidly, since this is a presidential election year and that sometimes means longer lines. ** And pray that things will go smoothly for Paul; he carries his driver's license, but may need an alternate photo ID, so I'm trying to be prepared for that (license expired back in July).

I consider it a wonderful blessing to have good friends who welcome my children into their home for hours for times like this! It is a great relief to know that they are well cared for and happy, and will enjoy time with their friends. It's additional blessing that my friend will bring them home when we call that we're home, sparing me the extra juggling of picking them up. ** Pray that I will get appropriate school assignments ready for them, and all the books/materials they'd need, the night before! ** Pray that the timing works out perfectly to get out the door, drop them off, and get to HCMC.

As of this moment, I am presuming that all is still on track for a noon surgery time, and a check-in time of 10:00 or 10:30. The official confirmation of this will come Monday afternoon sometime, at which point I will firm up all the timing details. It's slated to be four hours, although I am not sure now if that is surgery proper or inclusive of recovery time. I incline to the former, but we'll see. In any case, it's going to be a longish day, so I need to be prepared with things to do and perhaps some food to eat. My biggest hope is that I will be able to wait in a different waiting room, not down in the Surgery & Procedure Center's waiting room, which is not very comfortable for long hours of waiting. I was there during Paul's eye surgery, and it was less than pleasant. TVs blaring (not too loud, but enough), harder chairs, no little tables, just less soothing for the hours of waiting.

After much musing I have concluded that it will be best to drive to HCMC this time, and park in a ramp, and pay for the parking. I found that the rates aren't terrible, and I should be able to get a discount, which will help.

** Pray that all these details, from what to bring, the children, the parking, and the waiting, would go smoothly.

** Pray that Dr. Walsh's hands will be held and guided by our Master's hands, as he performs the surgery. Pray for any decisions he must make "on the spot" as surgery progresses.

** Pray that Paul will heal quickly, and that he'll be up to returning to work, even if it's lighter-duty for a day or two, by Friday or Saturday. He told me which days he took off, per Dr. Walsh's advice, but I can't remember if he said he'd go back to work Friday or Saturday!

** Pray that things go smoothly at home for these two or three days that Paul is off work, especially during the evenings.

Thank you all so much for continuing to read these updates, and for all your prayers for Paul and for our family. God has blessed us with this body, and we are so very grateful to him and to you. 

 

Tuesday, October 30, 2012 5:19 PM, CDT

One week. When Paul's next ear reconstructive surgery was scheduled it seemed so far away, and now it's looming a week from today. The pieces are falling into place, which is a gift. Paul had his pre-op physical and arrangements have been made for the children that day. Details there are yet to be confirmed, but that must wait till the day before surgery, when HCMC calls to confirm the time Paul must check in! The main detail that is unsettled is transportation.

When I say that, I don't mean that we don't HAVE transportation. We do--our vehicles are fully functional, and I am able to drive. The issue is parking. For his past surgeries, I have been able to either drive right up (when he's been inpatient following it), or I have been able to park a couple blocks away and walk to and from the hospital, and again drive up to meet him at the entrance. This time there's a problem called "the dark." You see, Daylight Savings Time ends this coming weekend, and that means it will be dark somewhere between four and five in the afternoon. Since Paul's surgery is slated to last four hours plus, walking those couple blocks alone to get the vehicle seems an unwise action. So what do I do?
 
At this point, practically speaking, since there is such unknown about the time he'll be done and ready to come home, I am leaning to (for the first time in this whole journey) park in the hospital ramp and pay for the parking. I believe there's discounts for patients, so it'd not be as much. Part of me would much rather find another alternative, but that unknown of what time we'd be ready to be picked up causes me to hesitate to make such an arrangement. I know, too, that Paul would feel very much that he is inconveniencing anyone by asking or receiving this, and I am quite cautious these days about seeming to trample on his feelings.
 
Having said that, I would ask for prayer. First off, pray that this transportation matter would work itself out, whether it's parking in the hospital ramp and paying, or receiving a ride home (we'd be able to take the light rail down), or some other possibility that hasn't crossed my mind.
 
Second, pray for Dr. Walsh and for the surgery. Each surgery now is less and less intense (though still very demanding of his expertise as surgeon and artist), but it is still surgery and unexpected things could arise. And, as Dr. Walsh said, until he gets in there and begins the surgery he cannot completely plan exactly what he will do, because he doesn't know just what he will find in the process. So pray that all go smoothly.
 
Third, please pray for our family. We are caught in a swirl of stuff and we desperately need God's peace and help to untangle the threads and piece by piece deal with life. Pray that God will guide us step by step, and give wisdom as we ask for it.
 

 

Wednesday, October 03, 2012 2:36 PM, CDT

As mom and keeper of the household, it often falls to me to be the one who coordinates all the details for daily life and the extras, like appointments. Usually I will refer to it as "getting all my ducks in a row" as I tackle the organizing. Sometimes it's a lot easier than others to get all the ducks to line up!

One thing I have learned over this past fourteen months is how wonderful it is to let God organize things for me! I've learned to share the need and see how He moves others to minister to us. I've learned to listen to His voice and take courage to pick up the phone and call and ask someone for something--not an easy thing for me to do! It calls for a vulnerability on my part that is terrifying, because it demands risking rejection.

 

This has been on my mind for the last few days as I've needed to get some ducks in a row, and I wrestled with what to do. You see, this time it's a medical procedure for me, so I hesitated about putting it here since this is mostly about Paul and his journey of recovery from a TBI. The reality is that the TBI has impacted our lives in many ways, one of which is that Paul does not have clearance to drive. It's not usually a problem, until the driver (me) is scheduled for a medical procedure that involves being sedated, which means that I cannot drive myself home afterward! I battled through that and concluded that I would share it with a friend and then here, and see how God moved to provide for this. Part of me wanted to figure it all out and THEN share; God be praised that I have learned over this past year and some to let go of that and be willing to share the struggle.

 

Well, as God would have it, the ducks fell into a row for this before I came to write here. I have a ride to and from the endoscopy, and the children are covered for that afternoon. For me, for this, it is a request for prayer that this procedure will go smoothly and will provide information to guide treatment. Back in July I was given a diagnosis of GERD (I'm not going to try to spell that out) and started taking medication to relieve the symptoms. Two months and two follow-up visits with my doctor later, the medication is helping but has not fully relieved the symptoms. Dr. Riley had intimated that in that case he'd request an endoscopy, so here we go.

 

With my matter out of the way, here's what is happening for Paul:

 

Ear reconstruction surgery, stage 3, is on the schedule! It took us a bit to get here, with a couple bumps in the road. I wrote of one already--the episodes of dizziness that Paul was experiencing. Thankfully, those have resolved and are not an issue now. The second bump was a couple weeks ago; Paul had been scheduled to see Dr. Walsh on September 17th, when I expected we would decide when to go ahead with scheduling surgery. It'd been a hectic day out, so when we arrived at the clinic to hear that Dr. Walsh's schedule had changed and he wasn't there--it was frustrating! The clinic had tried to reach us, but we'd been gone all afternoon, so we didn't get the message. We rescheduled for this Monday, October 1st, and came to agreement that we were ready to schedule surgery. Dr. Walsh was pleased with how Paul's ear looked and satisfied that the dizziness is cleared and won't be an issue with the surgery.

 

Yesterday I had the call with when the surgery is scheduled: November 6th. It's to be an outpatient or day surgery, so the expectation is that Paul will be home that evening. Dr. Walsh advised that he plan on a couple days off, but said that he saw no reason Paul couldn't go back to work after two or three days, though he might need to be on lighter duty for a day or two.

 

During this surgery Dr. Walsh plans to cut along the scar from the accident and swing Paul's earlobe down into position. He showed me what he is talking about--Paul can't see this, since it's on the side of his head!--and cautioned that he isn't giving us a lot of detail about his plans, because he simply doesn't know how it will go till he gets in and begins working. There will be another surgery to craft the top of the outer ear, and then whatever more is required for touch-up.

 

According to Theresa, the nurse who called to schedule, the surgery is four hours long, we need to check in a couple hours before. With a minimum of six hours, therefore, I definitely will be wanting Emily and Samuel to be somewhere for the day. My prayer is that God will move to put all the pieces together, whether He prompts me to ask or prompts someone to call me and offer. I know it will work out, and it will be good.
 

 

Monday, September 10, 2012 10:49 PM, CDT

This was a day full of meetings. Eight-thirty, ten o'clock, one o'clock, six-thirty. Admittedly, the six-thirty in the evening meeting was related to Samuel, not Paul, but it was a long day of meetings!

At eight-thirty this morning Paul and I talked with the lawyer who is handling the insurance settlement matter with us, to go over what to expect during Paul's deposition in the afternoon (the one o'clock meeting). Because that is an ongoing, unfolding matter I continue to refrain from saying much about it here; suffice it that this was a step along the way, and please pray that God's will be done in this matter. It was not and is not easy for us to be following this course, yet we trust that God guided our decision to do so, and will handle it and bring it out for good and for best for us.

Immediately upon concluding that meeting Paul and I, along with Emily and Samuel, packed up and headed out the door for Paul's appointment with Dr. Bowar, to review how things have been going at work since Paul was given clearance to return to the job part-time. It's been going along; Paul has been working four hours a day, five days a week, and is finding his way there. He is encouraged that he is remembering things, and is able to do the routine jobs. Dr. Bowar remarked that he considers that it is beneficial for Paul to be working, that it helps him in his recovery. I do believe that is true; it's been my sense that being at work, having his hands on the job to do the things that he has done, would help him to regain access to the information. His hands know what to do, and as he does them his brain reroutes and recovers access to information. It takes longer, but as he continues I believe that it will come more and more easily and quickly. It's frustratingly slow to him, but he does see improvement and is thankful that he is able to be a productive employee (and wants to be ever more productive and useful to his employer!).

Happily, Dr. Bowar concurred that it was time to clear Paul to return to work full-time, with minimal restriction (climbing more than a couple feet). In addition, Dr. Bowar tacitly "closed the file" on Paul, saying that there is no need for him to be seen again unless it becomes obvious and advisable that this minimal restriction be lifted. At that point Paul would need to follow-up with the neurology clinic, with someone in that department, as Dr. Bowar is planning to retire in the near future and likely would not be there, though his case notes would be!

As soon as we had the letter from Dr. Bowar in hand we zipped over to the main post office so Paul could take that letter up and get things in order to begin working an eight-hour day. He will do so tomorrow, and his work hours will span two tours: he will start at ten or ten-thirty (I'm a bit uncertain of the time he is to punch in, I had presumed it'd be on the hour since he'd have a half hour lunch break, but he said he's to come at 10:30 tomorrow, so we'll see) and be done at six-thirty or seven (again, I'm unsure of the times, so tomorrow will make it much clearer) and work four hours with tour two doing routine maintenance, and then four hours with tour three, the tour he had been on prior to the accident, doing more urgent maintenance calls--the kind that involve a machine not working properly so he has to figure the problem and fix it so the mail processing may continue. He's feeling nervous about that; I replied that when he feels nervous to pray and roll his anxiety onto God, trusting that God will bring him through, and that his wife will constantly be praying the same! As I said earlier, I believe that much of the information is still in his mind, and as he does the work connections will be made and he will once again have access to information. It may take time, longer than Paul wishes, but I pray often that it happen, and keep trusting that God will restore what the locusts have taken.

Following the stop at the post office, we headed out for Paul's deposition. Again, because this is "in progress", I will refrain from details. I did not sit in on the deposition, as we had the children along; they and I tackled school while we waited, and it took longer than expected.

An errand stop, and we were home finally about 4:30 this afternoon...I was tired and didn't really want to deal with supper or one more meeting, but I managed both. The final meeting of the day was a parents' only session for Cub scouts, which is slated to begin next Monday. It was good, and fairly non-demanding, and it sounds as though this year of scouting will be both enjoyable and instructive.

Glancing ahead, next Monday Paul has two appointments: first, an evaluation by Audiology to discern and correct any inner ear misalignment that contributes to occasional unsteadiness, and second, an appointment with Dr. Walsh to discuss the timing for the next ear surgery. Incidentally, after the last appointment with Dr. Silbert, about the eye surgery to come: As the next ear surgery is not yet scheduled, we will see Dr. Silbert again at the end of November, and perhaps then will schedule the next eye surgery, once we know when the ear surgery will be.

Please pray for these appointments, and for the four weeks of dentist appointments (for fillings!) that will start two weeks from today. And pray that Paul will find all goes wonderfully well as he resumes full-time work!

 

Monday, August 20, 2012 7:12 PM, CDT

A year ago -- well, a year and two days ago, to be precise -- I listened to a message that set our family on an unexpected journey: "This is Hennepin County Medical Center calling for the family of Paul McConnaughay, please call." It's the kind of call that ranks right up there with others you hope and pray never come your way, like the police calling or the military showing up at your door. I still remember starting to shake as I listened to the message, even before I called HCMC and learned that my husband had been seriously injured in an accident on his way to work, that he was unconscious, on a ventilator, had head trauma and a few other injuries. Right now, writing that, I find myself starting to shake again at the memory.

From the moment of that phone conversation till I arrived back home late that night (new day, since it was past midnight?) the trembling came and went. It sounds funny, but I was most shaky at the initial moment of contact with every person--from Lori, who blessed me with a ride to the hospital since I couldn't drive myself, to the chaplain who came to meet me and take me up to the waiting room, who stayed with me for an hour or so and gave me what information she could, to the pastor and other friends who came, to the doctor who first delineated Paul's injuries and then escorted me (and those with me) back to see Paul. I think that was because the arrival of another person on the scene meant I had to find the energy to receive caring and information, and that pulled energy away from keeping myself from shaking physically. God be praised, after that initial day that reaction was largely gone.

God be praised, also, that by the time I left the hospital that night I knew that Paul would recover physically. I look at that reality and am incredibly grateful that God did not then require of me a goodbye and a very different journey as a widow left to finish raising three children alone. That could have been! Sure, there was still the unknown of would be as he woke. Would he know us? Would he know who he was? What would be lost as a result of the hemorrhages? So many unknowns, things that would not be answered until he woke up and even then that wouldn't be clear right away. And the great unknown: When will he wake up? Only God knew the answer to that one.

Over the first eleven days, when Paul was at HCMC, when he was still not fully awake, the greatest gift to me were the hints of his personality that glimmered through. Small though those were, they gave me hope and encouragement that my Paul was "in there", and more was intact that we could know till he work up. I forget at what point exactly I declared, "He knows God and he knows us. We can build everything else." To me that was the bottom line. If Paul knew God and knew us we had the foundation to build on, and everything else could be rebuilt. Without that foundation, though, it'd be so much harder to put life back together--for Paul, and for us.

~~~

During the turmoil of these first weeks--indeed, over the first three months from the accident till Paul was home from the hospital--I was surprised by people remarking how well I was coping with this. Only a few weeks after the accident (and I can only guess at that because I was able to drive again) I listened to a friend thank God for a wife who could say, "God is good," while her husband was still in the hospital in the early stages of recovery from a traumatic brain injury. My inner reaction was, "That's surprising?" To me it seemed natural; God was still God, and God was still good, even with this situation that had been thrust upon me. I do know that that is not a natural reaction; it was a gift from God, a testimony to those watching. One of Paul's doctors at Bethesda remarked on this as well, telling me that he and others there were amazed by how well I was handling this whole thing. Again, I was surprised to hear it and had that dual reaction of "thank you for saying that" and "why it is so surprising?"

~~~

Gift after gift, now:

* Paul's life was spared--he could've been killed or died after the accident.

* An absolutely excellent hospital and medical staff provided care to him immediately following the accident.

* Another excellent medical facility advanced his recovery over the two months he was there.

* And back to the first hospital, to a rehab unit, where Paul made more progress...

* ...to the day he was released from the hospital to be home and have ongoing therapy to continue his recovery.

* A wonderful church body that came around us for prayer and with practical support.

* MOMS, White Cross, home school, Musikgarten, Cub Scouts, Music Makers choir, Sunday school and Wednesday Connection, Adventure Girls, Hope Academy...all the pieces of our family life that helped us carry on, giving us normalcy during some massive upheaval.

* Therapists and friends who served Paul (and us) through his recovery.

* Paul's supervisor, co-workers, and employer, who helped handle paperwork and things so we'd have income while Paul was unable to work...

* ...and help him get back into the job when he was cleared to return to work!

~~~

Well, that's a lot of musing from me. Turning to my main idea for this update: What is the now?

The overarching answer to that is, "It is amazing to see where Paul is a year after a TBI!"

One year ago: In the hospital, unconscious, on a ventilator, two skull fractures with associated hemorrhages, 90% of his left outer ear torn off, so many unknowns.

Today: Back at work part time, diligently seeking to regain information that is hiding out in his brain, looking forward to being cleared to return to work full time, still unknowns, but such great hope and confidence that God is at work--He's done great things to this point, and isn't done yet.

It's not just me standing in awe at how much Paul has recovered already. Early on medical folks cautioned that Paul would be affected in ways we couldn't see then, as a result of the TBI. Over time the therapists worked to give Paul perspective and tools to manage the limitations he was experiencing. Yes, he's changed and there will be some lasting effects of this accident, yet he is continuing to move forward and that is awesome indeed. Less than a year after a TBI--where he is, what he is doing, how he is doing--that's amazing! That's God.

~~~

Some of the "yet to come" things for Paul are the remaining surgeries to reconstruct his left outer ear, and at least one more eye surgery. He's been back at work part-time since July 24th (I laughingly say that was an anniversary gift!) and is eager to see Dr. Bowar again and hopefully be cleared to go back full-time. Pray with us for that appointment on September 10th.

Next week Paul is scheduled to see Dr. Silbert and we will hopefully know more about when the next eye surgery might happen. It is possible that that will be delayed some since the next ear surgery is not yet scheduled. These delays are frustrating to Paul, who really wants to have them done. I keep reminding him that God is in control, so these delays that seem silly are in God's hands, and it'll be best all around, even if we can't see it now.

I know, too, that one aspect of Paul's frustration about these delays is his wish to regain driving privileges. Please keep praying that he will be gracious about that restriction and allow me to serve him by being his driver when he needs one! And pray that when the time is right for him to resume driving we'd handle it well. I admit I will likely be somewhat apprehensive, especially at first, and he'll likely be as eager as a newly licensed teenager, wanting to drive everywhere!

One year later: It has been a year I didn't ask for, a year I wouldn't have chosen. But it is a year God gave; it's been full of lessons and struggle and tears, and great joy and comfort. Paul and I have been tested, we've struggled; there were times I wondered if we would survive. God has held us, and by His grace we've held on to Him and to each other, and we've not let this trial or the enemy of our souls tear us apart. The song "Strong Enough" has been one that blessed me immensely during this year as it worded what I felt and experienced. "You must/You must think I'm strong/To give me what I'm going through/Well, forgive me/Forgive me if I'm wrong/But this looks like more than I can do/On my own/ ...." That's the first verse; the chorus resonates too: "I know I'm not strong enough/To be everything I'm supposed to be/On my own/Hands of mercy, won't you cover me/Lord, right now I'm asking you to be/Strong enough, strong enough/For the both of us." He's been, He is our strength, our refuge.

 

Monday, August 13, 2012 10:33 PM, CDT

Today Paul (and I) saw Dr. Walsh. He's pleased with how the ear is healing, following the surgery in June, and the plan had been to look at the calendar and decide when the next surgery would happen. Instead, that process is on hold while we sort out another issue.

Paul has been experiencing some dizziness, most notably when he first gets up in the morning. Sunday morning it took fifteen or so minutes for that to ease. To both of us it appeared that when he's been lying down for several hours he experiences this dizziness when he gets up. He spent part of last night in the recliner and found that that reduced the dizziness significantly. We also both observed that once he's up and about he has very little trouble with this, so it seems to be related to being in a horizontal position for more than a couple hours (think for a night's sleep).

So, when we arrived for the appointment this was discussed. Dr. Walsh wants Paul to see a colleague at HCMC to figure out what is causing this and resolve it before we schedule the next ear surgery. He remarked that Paul would be lying down for the surgery, and he wouldn't want him to have to deal both with post-surgery pain and this dizziness.

As of now we are waiting for a call from the clinic to schedule this appointment. Pray with us that we'll figure out what is going on and be able to resolve the problem quickly and completely.

 

Monday, July 23, 2012 10:11 PM, CDT

Today was an exciting day: Paul was given the return to work order by Dr. Bowar during the appointment with him this morning!

Granted, it was a bit disappointing to Paul, because Dr. Bowar only cleared him for part-time, four hours a day, for the next month or so, and gave a couple other restrictions, but he accepted that "it is what it is".

As soon as he had the letter from Dr. Bowar Paul wanted to hurry right down to the post office and get it to a supervisor so he could get right to work...he was primed and ready to go in tomorrow! The supervisor we talked to said that it would likely be a few days while they dealt with red tape on their end, so both Paul and I were pleasantly surprised to get a message in the early afternoon from his supervisor; Paul called back and was told that he needed to come in to the postal medical center tomorrow morning at 9:30, and then he'd punch in for work at 10:30!

There are still unknowns about this: what Paul's hours and days of work, mainly. Those will become clear as the next few days unfold. It appears, based on when he's to punch in tomorrow, that his usual hours for these next four or five weeks, till we see Dr. Bowar again, will be 10:30-2:30. I imagine that and what days he has off each week will be communicated tomorrow, so we'll know what adjustments we'll need to make to our family's routine (if any).

Obviously, this is exciting and thrilling for us. It's been a long haul for all of us, and this is a huge light at the end of the tunnel for us. It's a little frightening, too, but I am confident that Paul is ready for this, that God is in charge and all will go well. That is my prayer; please join us in praying that Paul will find that his hands know what to do, and as he works he will find information becoming readily available very rapidly. Pray he'd be patient with himself while things come back. Most of all, please join us in rejoicing that he (and we) has come to this point!

As I prepare to close, I want to ask for continued prayer for healing for his left eye, the one that he had surgery on. It is healing, but Paul finds that sometimes it itches or has a bit of crustiness about it. We've been a bit easy-going about applying the drops or ointment, so I suspect that is part of it, and as we become more diligent to put the drops or ointment in things will clear up quickly.

In addition to the appointment with Dr. Bowar, Paul saw Dr. Walsh this morning. He'd been noticing a bit of seepage from one of the incisions from the ear surgery; last week he talked to Dr. Walsh about it, and Dr. Walsh said to come in to let him have a look at things. Paul reported that Dr. Walsh had removed a few sutures that for whatever reason were not resorbing, and also removed some other gunk, possibly from the drains. I trust that now this will completely heal. Pray for that, and pray that we'd know what to do, when to call and check with the doctor if we have a question or concern about the post-surgery healing for both ear and eye.

 

 

Thursday, July 19, 2012 9:47 PM, CDT

Well, finally I am getting to an update on Paul's surgery yesterday. All told, it was about a six hour stint, from the time we left home till we returned. The "that didn't go as planned or desired" pieces were NOT related to the surgery, which did go well, in Dr. Silbert's eyes; Samuel's fun day of swim lessons had to be rescheduled due to heavy rain (I'm not sure if it was thunderstorm or not, I couldn't hear well from inside HCMC, and I was frustrated in the process of getting Paul's medication when he was discharged. All three prescriptions had been sent, supposedly, to the pharmacy there, but only one was actually received and filled. The other two were sent to the pharmacy we usually use because the location wasn't manually changed for each one, so I had to swing by there to pick them up, and they didn't pull the prescriptions off the computer till I came in, so I had to come back again twenty minutes later to get them! I was not a happy camper about that, as I desired to get home so Paul could settle and take it easy, per discharge instructions.

Those were really minor issues. More to the point, as I mentioned already, the surgery went well. Dr. Silbert did more explaining of exactly what he was planning to do both today and for the next surgery, so I understood it better. His focus yesterday was to adjust the muscles that control the lateral movement and positioning of Paul's left eye, to bring it into more "normal" alignment. It is still slightly crossed, but Dr. Silbert felt that this was an appropriate amount of correction. He'd explained prior to surgery that sometimes the eye will keep healing itself, which could result in overcorrection eventually, so it's better to under correct.

As a result of eye ointment (antibiotic) that was used yesterday in both eyes (Dr. Silbert did some small examining of Paul's right eye as a part of the surgery, so it was a little irritated) Paul found that his vision was blurry. He'd expected that he'd be able to see with minimal distortion right after surgery, so that was distressing to him. Today his right eye's vision was back to normal, and he indicated that he could see some with the left eye. That eye is still swollen and red from the surgery, very tender, and we have to continue with ointment and/or drops for a couple weeks till Paul sees Dr. Silbert again.

Something that I would appreciate prayer about is my ability to handle applying the ointment to Paul's eye. I had no trouble doing the drops this morning, and I had been able to apply both drops and ointment to his eye right after he was discharged from Knapp Rehab, back in November. But this evening when came time to apply the ointment--Dr. Silbert, during Paul's post-op appointment this morning, made clear that he wanted Paul to use the ointment instead of the drops--I could NOT manage it. I think it was a pile-up of a number of factors: my own visual limitations, Paul had just had surgery so his eye was swollen and very tender.... Whatever it was, I couldn't bring myself to put the ointment into his eye. Even thinking about it now makes my stomach clench. Samuel was able to do it, which felt very wrong to me; here I am an adult and it's our seven year old who has to put the ointment into his daddy's eye because his mama can't handle it! I was in tears, and Paul was quite gracious in telling me that it was all right, perhaps one reason God has allowed this circumstance was to get him to understand the vision challenges and limitations I live with. He had never fully comprehended it before. That helped, but I am still bothered by this.

Today's post-op appointment had presented some challenges, logistically. We'd scheduled the appointment back when we scheduled the surgery, and it was fine. At that point I presumed that Samuel's swim lessons would be done, so there'd be no conflict and I would be able to accompany Paul to the appointment. I like to be there to hear directly what is said and explained; it helps both of us as two pairs of ears get more details than just one pair. With his swim lesson fun day shifted to today I was suddenly faced with juggling logistics, and it took some time to figure out the best way to manage piano lesson, swim lesson, and Paul's appointment. Blessedly, it all worked out smoothly--Samuel and I went to his piano lesson, then we zipped home so he could change into his swim trunks, we dropped Paul off early for his appointment (and he planned to take the light rail home) and headed off to the pool. I'm very glad tomorrow will be a quiet, "I don't have to go anywhere" day! (Actually, I should go to the credit union as it's payday, but I am wimping out on that since this week's been busy, and the weekend is shaping up to be fairly busy as well.)

During his appointment today Paul learned from Dr. Silbert that very likely the skull fractures he sustained in the accident did damage to the nerve, which runs along the skull bone. Paul's earnest desire is that God will do a miraculous healing work to restore the nerve, to un-paralyze it.

I think this about covers yesterday's surgery. Compared to the ear surgery a month ago, this was almost a piece of cake! Funnily enough, I have been more exhausted following this surgery than I was that one. It appears to me that the eye heals rapidly; even since yesterday I seem to see a lessening of the redness of his eye. There seems to be more swelling today, but less redness and also less "weeping". For the next two to three weeks, till the next appointment with Dr. Silbert, we will carry on with the ointment and/or drops, and pain medication as needed. I expect that at the next appointment we will begin talking about the next surgery, but possibly won't really get into it till the two-months-post-op appointment. Dr. Silbert suggested that that surgery could happen as soon as two-to-three months after this one, but when he came to talk to me after the surgery yesterday he indicated that in light of what he'd done during surgery and Paul's overall case, waiting till four to six months from now would give a better outcome. So that is where we are right now. 

 

Tuesday, July 17, 2012 10:15 PM, CDT

Eye surgery tomorrow, and I believe we're ready. Samuel will be in good hands for the day. I'd love to watch him have fun on the last day of swim lessons, but -- oh, well. This is how it played out for this year.

Happily, we won't need to check in as early as we had to for Paul's ear surgery. Originally he was scheduled for a 10:00 check in, but that was bumped forward to 9:00. Much nicer than 6:30 a.m.!
 
I don't know how long the surgery will take; my understanding is that this is an outpatient surgery, so once he's recovered from anesthesia Paul will be discharged to home. My best recollection is that surgery will be an hour or two, but I could be way off base on that. Tomorrow's update will give better detail.
 
Here are some prayer points, please do pray as God leads. He is a much better prayer guide than I!
 
Pray that all the logistics of the morning go smoothly--dropping Samuel off and getting to the hospital in particular--and likewise picking him up and getting home later in the day, after surgery.
 
Pray for Dr. Silbert and all the others who will assist in the surgery.
 
Pray that the surgery go well and the desired outcome be achieved. Dr. Silbert has indicated that very likely this is the first of two surgeries, and Paul would like to only have one. Pray that God's will be done, and what will give the best outcome.
 
Pray we'd rest well tonight.

 

Friday, July 13, 2012 10:16 PM, CDT

We are down to days to Paul's eye surgery, and I am more and more feeling the pressure to have all the details fall into place. I've made a few decisions so some things are settled, but the biggest logistical concern for me is making sure that Samuel is cared for this day.

God has graciously provided someone who most likely will be able to take Samuel to his swim lesson on Wednesday, which is a huge praise! However, this person will not be able to have him for the rest of the day, till Paul and I are able to pick him up. She is willing to bring him to someone else's home, but her own family's activities don't allow for adding another child to the mix. So finding someone who is willing and able to have our little guy from roughly 11:45 to whenever--and it is hard to not know what time Paul and I would be able to pick him up--is urgent!
 
This is the biggest need right now. I am praying and confident that God will work this out, yet I admit that I am growing more anxious as the days pass and I don't see how it will be. Please pray with me to trust, and to let this need be known (as I'm doing here), and for it to be taken care of in perfect time. As I said, with the days ticking away I am struggling more with the unsettledness of where he'll be, who will take care of him, and it will be a relief to see God work it out.
 
There is one other matter related to Paul's having surgery that I would appreciate prayer about. His oldest sister recently took up residence in Minneapolis. Relations with her are strained and have been for several years (with me in particular). When Paul had his ear surgery last month she showed up at the hospital--she was actually there waiting when Paul and I arrived, which didn't thrill me, and I was less than thrilled when she eventually found her way up to the family waiting room where I had settled while Paul was in surgery. By God's grace things went well and there was no explosion, but I REALLY do NOT want her camping out with me at the hospital while Paul is in surgery!! I am stressed enough and the weight of her presence increases the stress. Earlier today Paul and I briefly discussed this matter, with no definite resolution. Pray for us and for our handling of this ticklish issue.

 

Monday, July 2, 2012 10:14 PM, CDT

Two weeks and two days till Paul has his first (he hopes it's his only) eye surgery. It will not be nearly as long or as involved a procedure as the ear surgery was, but I am starting to realize that it does have some logistics that I need to work out. That's not quite accurate; I've known that there are logistics to figure out, I simply haven't had the energy to tackle them! And now it's to the point where I must put on my arranger's hat.

The need is going to be having a place for Samuel to be from roughly 11:30 to whenever Paul is through with surgery and home. I think I will be able to juggle the morning and get Paul to HCMC and Samuel to his swimming lesson, and be back to HCMC myself to wait till Paul is ready to come home. My prayer is that someone will be willing and able to look after Samuel for those hours in the afternoon. It's hard, as I don't know exactly what time Paul's surgery will begin, nor do I remember how long it is anticipated to take, or just how long after surgery it'll be for him to be ready to leave the hospital for home.

To be honest, even though I COULD manage taking Samuel to his swim lesson myself it might ease the burden for me if someone else could cover that-- I'm going through various "what ifs" as I say that, and find myself hesitating to even suggest it. Paul is tentatively scheduled to be at HCMC by 7:00 a.m., to check in for the surgery, which means we would have to leave home by 6:30, and that would necessitate dropping Samuel somewhere around 6:00 a.m., which seems very inconsiderate. An alternative would be to have him spend the night before with someone, as happened for him and Emily with Paul's last surgery. Perhaps the biggest issue in this, for me, is asking someone to take him to his swim lesson. That seems to be asking or expecting too much from someone who's gracious enough to volunteer to keep our son safe and happy during this day.

Now that I've thrown out a tangle, let me try to unravel it and lay out a couple scenarios. One possibility is to have someone who will take Samuel after his swim lesson, at 11:30 or so, and have him until Paul and I are home. That time is as yet unknown and depends largely on how he recovers from the anesthesia. Whether I would bring him to you, or meet you somewhere is a detail that would have to be worked out later. Another possibility is to arrange for Samuel to spend the night before (which would be Tuesday) at someone's home, and also spend the day there, till Paul and I come home. But this would include that dear person taking him to his swim lesson (at the Jim Lupient Water Park near The Quarry at Johnson Street) in the morning.

These are the two options that have come to my mind. This is a need, and I do tremble a little at asking for help. I trust that God will work it out perfectly, and I pray for the one who answers God's tugging about this.

I should remark, too, that for this particular day only Samuel will need a place to be; our other two are elsewhere already.

Paul's focus, aside from the eye surgery that is most immediately coming up, is on his return to work. Please continue to pray for our appointment with Dr. Bower on the 23rd--especially that he will write the return to work order for Paul. Pray that whatever restrictions he puts on this Paul would accept, and everything would work out with his employer when Paul takes this return to work order in and they make the arrangements for him to "get back in harness". Paul has done some talking and gained some sense of what the plan is from the post office's perspective, so it's a matter of getting all the pieces together once he has the doctor's clearance for him to go back to work.

I look at this and cannot but rejoice...it looks as though Paul will be able to start back to work at the end of this month, perhaps, and that is less than a year after his accident! That is truly astounding, and is a gift of God's grace. I am trying to be careful here, as I don't know just how all this will work out--it's scary and exciting at the same time.

Changing gears here: From time to time I have posted an update that is more "about me" than about Paul, and I want to do that briefly tonight before I close. One reality of this journey is that it impacts each member of the family. I have carried a huge amount of responsibility for months, and have been challenged to keep finding the balance that our family needed--one way to sum it up is to say that with every step of recovery that Paul made I had to adjust what I did and how I did it to honor him as husband and head of our home though I was doing many things in his stead. That's been hard, and I didn't always do as well as I might have.

In recent weeks I have begun to see more and more the price I have paid and am paying--the inner weariness and depletion of energy to take on doing things. By God's grace I have started to carve out occasional times to get away and have an afternoon alone, to begin to replenish the springs of inner life. That pattern is likely to shift as our journey continues to unfold.

The last couple days have revealed another physical impact of this past year on me. My tongue-in-cheek description earlier today was, "I am now the proud possessor of reflux. Hurray." Yes, I'm being sarcastic. More accurately, I am now dealing with the onset of gastro-esophageal reflux disease, or GERD. Terrific. Just what I needed. Yesterday was a rather miserable day with puzzling pain, and eventually I chose to go to the emergency room to have it checked out. I ended up spending the night at the hospital as they wished to do observation and a few more tests through the night and in the morning. With heart disease issues in the family history there was worry--and a lot of thankfulness that this was NOT heart-related! That was a huge relief, and knowing that GERD can be well-managed--well, I actually laughed a little to myself because I had already begun to do one thing that is recommended. These next few days will be a time of watching and making observations for myself of what helps and what seems to trigger the GERD, using the medication that will help relieve the symptoms, and making the adjustments that are needed. I feel that my body finally said, "It's my turn, now, since other things are settling out."

 

Monday, June 25, 2012 10:34 PM, CDT 

Paul had his second post-op follow-up visit with Dr. Walsh this afternoon. Normally I go with him, but I had been bitten by some sort of GI bug and was feeling wretched to the point that I wasn't up to going...very frustrating for me, as I wanted to know what to expect as we go through this "between surgeries" phase. I had been thinking about it and really needed to find out how this would work. Would we have to call in three months? Would we see him (Dr. Walsh) on some sort of regular basis? I realized as I contemplated this that for months now we'd had weekly appointments, and much of what was happening was clear--the timing and such--and then, with the surgery being over, suddenly it seemed that communication and visits were dropping out of the picture, and I found that rather frightening. I had become accustomed to having someone--Dr. Walsh, most noticeably--overseeing things, telling me/us what to do and when, sort of holding the reins. Sure, we had a significant role in this, and I did manage most of the appointment scheduling and all, but it was in cooperation with a doctor. Suddenly that "comfort", having a doctor directing things, was seeming to slip away, and I was feeling very apprehensive, as though I was being set adrift and would have no guidance from a doctor as we continued to navigate this journey.

As I wrestled with the fact that I simply could not manage to go with Paul today he suggested having Dr. Walsh call so I could talk to him and have my question(s) answered. Paul carried that message, and Dr. Walsh called while Paul was with him. His answer to my inquiry was that we'd see him again in four to six weeks, at which time he would see how Paul is healing, how stable the ear is, how the skin is looking and all the other things he will evaluate to decide what surgery step to take next...and then we will take out the calendar and consider a surgery date!

It was sweet relief to hear this, to have a sense that I and Paul are not going to be "on our own", so to speak, during this waiting period. Dr. Walsh has implicitly made clear that if ever I have a question, or if something comes up with Paul's ear, to give him a call.

Four to six weeks before our next check-in with Dr. Walsh puts us about the end of July or early August, and knowing how Dr. Walsh's surgery schedule goes, and allowing for three months between surgeries--my best guess as to an approximate date for the next ear surgery is mid-September. Hurrah--we'll have just gotten school underway and will have a day or more of disruption.

Please continue to pray about Paul's return to work. Nothing has been officially done as yet; our appointment with Dr. Bowar, who is most likely the one to write the return to work order, is late July, about a week after Paul's eye surgery. Even so, little things are stirring that indicate this may be coming, which is both exciting and unsettling. Pray for wisdom, that Paul would be accepting of whatever decisions Dr. Bowar makes as to what he can and cannot do at work (Lord willing there will be few restrictions), and that all the details with his supervisor would work out perfectly for this as it unfolds.

 

Tuesday, June 19, 2012 11:26 PM, CDT

Well. How did I manage to skip at least a quick update to the effect that Paul had been discharged? That happened Friday, so he's been home since then, and has been doing well. By Thursday he'd been "promoted" to oral pain medication instead of the little pump that he'd been using since the surgery, which was one step toward his being ready for discharge. Dr. Walsh called me Friday morning to say that by his criteria Paul was ready to be discharged, and I could coordinate the time that worked for me. Shortly after talking to him one of his residents, Dr. Montag, called and let me know that the discharge paperwork was in order, and we settled that I would come in the afternoon.

The way it worked out, I drove down to our church and left the car there while I walked down to HCMC and had a final tutorial--where I actually emptied the drains under the nurse's eye, to be sure I knew what to do! When everything had been done and explained--all the pain medications, the directions as to what Paul could and couldn't do, all that sort of stuff--I scampered back to the church to get the car and drive down to the patient pickup area while Paul dressed and was helped down to the entrance.

By far the more noticeable pain has been the chest/abdominal area. Paul was surprised and puzzled by how that seemed to worsen after a few days; he was finding it harder and harder to get comfortable in bed. Night before last he ended up spending more than half the night in the recliner in our room, which was more comfortable for him. That gave me the idea that perhaps elevating his head and torso with a couple pillows might ease things and let him settle more comfortably in bed. So far as I know, he did sleep more peacefully last night in bed with two pillows!

Today it has seemed that his need for pain medication is decreasing. For the first couple days home he was definitely watching the clock to be able to take another dose of Percocet, which he could have every four hours as needed. I think he's only taken that twice today. He is taking a longer-lasting pain medication as well, and I'm guessing that even the need for that is starting to drop. That one, however, was prescribed for 10 days, so pray he'll abide by doctor's orders and continue it till it's gone.

As of yesterday the bubble and dressing are gone from Paul's ear. We saw Dr. Walsh for the post-op appointment, and he removed those AND the stitches. Oh, and the drains. He was very pleased with the degree of detail--the curves and valleys of the ear foundation, how the skin looks and is conforming to them. He did caution us that after one of the next surgeries a lot of that detail will be temporarily (possibly six months temporarily) lost due to swelling as he continues the ear reconstruction.

We will have a second post-op follow-up with Dr. Walsh this coming Monday. I'm making sure that the drain sites and the surgery site are staying moist (with ointment) to promote healing; that likely will end after the next appointment. How often we'll see Dr. Walsh after that remains to be seen. I'm guessing that we will check in with him on some sort of regular basis, since Paul has at least two or three more ear reconstruction surgeries ahead, but I don't know the schedule. I expect we'll find out as it unfolds.

For now we are in the first "between surgeries" period. Dr. Walsh reminded me/us that there will be a minimum of three months between surgeries, meaning that the soonest the next one could be is mid-September. I must try to remember to ask what factors play into deciding exactly when the next surgery will be scheduled. How he heals is likely one factor. I'll keep posting about it here, as things develop.

Also now our attention is going to be turning from the ear reconstruction to Paul's (first) eye surgery in July, and the next follow-up appointment with the neurosurgeon (Dr. Bower) a week later. PLEASE pray for both of these. Paul would be thrilled to have his eye begin to show signs of healing itself, which would reduce the correction that Dr. Silbert must do surgically. Pray wisdom for Dr. Bower, and patience and trust in God, and acceptance of the doctor's decision, for Paul.

 

Wednesday, June 13, 2012 09:42 PM, CDT

Paul was much more alert today when the youngers and I stopped in to see him about 1:30 this afternoon, after I'd picked them up and we'd done a Target stop. Dr. Walsh had requested that I try to be there in the afternoon, when he would be doing rounds, so I revised our movements to make it work.

Dr. Walsh arrived just about 2:30, and I learned that his primary reason(s) for my being there were 1) to have a chance to see how Paul's ear looks, as he was going to change the dressing, and 2) so he could show me the drains and explain how and what I would need to do with draining them, so it would make better sense when the nurse shows me just how it's done. I felt that trying to do that today, with Emily and Samuel present and so antsy to get home after two days of being elsewhere, would not be conducive to grasping the process.

Based on Dr. Walsh's description, I had imagined that Paul's ear would look very weird. It didn't. It's not exactly like the other, but Dr. Walsh had told us at the outset it wouldn't be. He would make it as like as he could, but it wouldn't be exact. Last night he'd told me that there was a bit of the ear that will always have hair on it, so Paul will have to shave that regularly. I didn't quite get why that was the case till today when Dr. Walsh told me that he'd needed to shift this left ear slightly forward and slightly down due to scar tissue, and that meant that it ended up where there is hair...hence the need to shave it for the rest of his life (unless he should end up bald over time!).

Once I'd had a chance to see the results of yesterday's surgery (and Dr. Walsh could check things out too) he put on a new dressing and "bubble", a protective shield that covers the whole ear and dressing, and is held in place by a Velcro band. It was interesting to watch him pack water-soaked absorbent cotton in the curves and peaks of the ear. This helps with the shaping and dimensions, to get and keep the skin into the right configuration. This renewed dressing will remain in place till we see Dr. Walsh Monday afternoon, at which time it'll be removed and his reconstructed ear will be visible to all.

Paul tells me that when he coughs his chest hurts--not surprising, considering that he has an incision in the chest area. Moving, sitting up for example, or even shifting position in bed, hurts. He's currently attached to the wall for suction on the drains, so Dr. Walsh advised that he not try to get up and walk around today...and since he has other wires for other things it could become complicated to be too mobile. He urged Paul to use the pain medication to stay comfortable, and I observed that he was giving himself a dose of medication once when we were there today; he had a pump so he could press a button and get a dose when he needed it.

As yet, no proposed discharge date has been given. Dr. Walsh listed the things that need to be for him to be discharged, and those aren't happening yet. My sense is that he won't be discharged tomorrow, and I am not going to speculate on when it will be. I want him home, but I'm not wanting to rush to get him home before he's ready to be home! Paul had it fixed in his mind that he'd be in the hospital till Saturday or Sunday--five days--and I've been more, "Maybe as soon as Thursday or Friday", so we'll see as each day passes and he progresses in his recovery from surgery, when he's eating and moving and managing pain and ready to come home. I've found myself thinking it'd be better to stay longer than to rush, especially since we have a two story house and that could be a stress. It's always a balancing act; there's something about being home and in your own bed that can be very beneficial to recovery, yet the care you get in hospital can also be of great benefit.

Before I close tonight, Paul called a short time ago to inform me that he has been moved to a different room. According to him, the heart monitoring they'd been doing as a matter of course was no longer needed, so they transferred him to a different area. He's still on the fourth floor. I'll have the fun of finding his new room when I visit tomorrow! It's the red building, 4.113, for anyone who wishes to stop in.

 

Tuesday, June 12, 2012 11:25 PM, CDT

It was a long day...

...and all went well. 

That's a very good way to begin this entry. It was indeed a long day--I set the alarm for 4:45 to give both of us time to get ready. We needed to be out the door just before six to get down to HCMC by 6:30 (via light rail, so I wouldn't have to deal with parking). I think we walked into the Surgery and Procedure Center about 6:28, so we were right on time! Of course, after that things seemed to slow down--Paul was called back sometime between 6:45 and 7:00, I think; I joined him sometime later and we finally headed upstairs--well, all right, I confess I didn't check the clock for each of these, but it was well into the eight o'clock hour.

As soon as we were upstairs I headed off to the surgery waiting room. This was a bit before 9:00. Shortly thereafter a nurse came out to get me as Dr. Walsh wished to review the day's plan with me before the surgery started. That was unexpected but appreciated! I had thought that I wouldn't see Dr. Walsh till after the surgery when he came to tell me how everything had gone.

When I went back to the surgery waiting room Paul was being wheeled off to the OR, so I assumed that the surgery would be quickly underway then, about 9:00, but it didn't actually begin till just about 10:00. I'm not sure what caused the delay, but I wasn't bothered by it. I had come expecting it to be six to eight hours in surgery for him, and that I would hear from Dr. Walsh at the end.

I'm guessing that Dr. Walsh didn't want to leave me all day with no news; about noon he had a nurse call out from the OR to let me know that the surgery was proceeding well, and at that point the rib bones had been removed and Dr. Walsh was ready to begin carving the new ear shape.

I had a couple other phone updates during the afternoon, each one letting me know that the surgery was going along very well. About 5:20 the update was that Dr. Walsh was beginning to close, it'd likely be another hour or two before Paul was through surgery and in recovery, and before Dr. Walsh would come to talk to me. I didn't note the time he came into the waiting room; I think it was between 6:30 and 7:00. Regardless of the exact time, we went into a consult room so he could give me the "how it went" details in private--I liked that, as there were a fair number of people in the waiting room and it would've been harder for me to ask questions freely in that setting.

So, here's the recap of what Dr. Walsh told me: Dr. K ended up taking three rib bones, what Dr. Walsh referred to as a "block", because Paul's ribs had ossified so much that there was not much cartilage left, which meant that Dr. Walsh needed a piece large enough to carve the whole ear foundation. Normally he would be able to bend some of the cartilage in this process, but he couldn't do that this time. He told me that it was three ribs' worth of bone, and Paul will notice that the bone is gone, but once he's healed from the surgery he really is not going to notice this. Dr. Walsh, in fact, asked Dr. K if this block of rib bone being removed would be safe for Paul, and was assured that it was completely safe.

Because of the degree of ossification, Dr. Walsh ended up having to drill the rib bones into the shape he needed instead of carving it. But it turned out well, it looks good and he is pleased with how the whole process went. He told me as well that he "stored" some extra or left-over bone under the skin where the ports from the expanders had been, so we will see a couple lumps for probably six months till he performs the surgery where he'll use that bone. By having it there it won't be necessary to go into Paul's chest again for bone! He also explained that Paul's ear lobe is pushed and turned forward, so it's going to look odd for the next while. If I understood correctly, that will be "fixed", so to speak, in the next surgery three months or so from now.

Dr. Walsh didn't say for certain how long Paul would remain in the hospital. I'm guessing that he won't be discharged till Thursday, simply because Dr. Walsh will do rounds tomorrow afternoon and I would think that will be a bit soon to send him home. In addition, I will need to be shown how to care for the drains that are in, as Dr. Walsh anticipates that those will still be in place when Paul is discharged. He wants me to have the nurses show me how to tend those (oh, joy), and since I won't stop into the hospital till afternoon (so I'm there when he does rounds, Lord willing)...well, he's in charge of that decision! Maybe I should simply say that I am hoping it's Thursday at the earliest, and I am trusting that whatever decision the doctor makes will be right and best for Paul and for us. I certainly want him home, but I also want him ready to come home!

As far as next steps, the time is yet unsettled, but we will see Dr. Walsh in clinic on Monday, in the afternoon, probably after three. I will need to call to get that figured out. My guess is the drains will come out then, and we will probably talk about when to schedule the next stage surgery. They're to be three months apart, so it'll likely be late September. Pray that that work itself out, especially if Paul does get a return to work order and is able to begin easing back into work! We're going to be very familiar with the process of surgery here by the time this is all over!

As I close this update, I am full of quiet joy that this day went well. It had some moments, but overall I was completely calm the whole day. I really was not fretting about the surgery, was not anxious. I attribute that to all the prayers that bathed us for this day, to the confidence born of months of meeting Dr. Walsh each week for the fluid injections to expand the skin (I was assured that he knew what he was doing, and trusted him to do well), and to the confidence that God was completely in control of this whole thing, as he has been since the moment of Paul's accident. Please continue to pray for Paul's recovery, especially that he would make use of pain medication to ease the pain so he heals better and faster. He tends to tough it out, and that can slow healing as the body then spends so much energy coping with pain and has less to give to healing. 

 

Monday, June 11, 2012 11:53 PM, CDT

The countdown is on

We are down to hours instead of days. It's late, and as we must be at the hospital by 6:30 I really need to wrap up this day. The main thing I want to do here is share some prayer points:

Pray that Paul will be at peace about this, that he will not fret over aspects such as losing ribs.

Pray that the ribs that are removed would provide just the right cartilage, and the right amount of it, for Dr. Walsh to use in carving the new ear foundation.

Pray for Dr. Walsh and Dr. K--that their hands be guided throughout the whole surgery.

Pray that all will go smoothly, and that any and every decision Dr. Walsh makes "on the fly" will be good.

Pray for logistics for us--getting out the door, getting to the hospital, going through all the checking in and pre-op prep.

Pray that I will have enough to keep me occupied while I wait, and that I will keep my trust in God through the hours of waiting.

Pray for Paul to recover quickly and manage pain well.

Pray for our children and for the two wonderful families who are caring for them these next two days (and pray for our oldest, that he'd likewise be blessed and a blessing where he stays tomorrow).

Pray for good sleep tonight, and energy for tomorrow.

 

 

Wednesday, June 06, 2012 11:01 PM, CDT

I am breathing a sigh of relief tonight that no repeat of the neuropysch assessment is needed. After waiting a couple days to hear from the multi-appointment scheduler, whom I understood was going to call me, I called and inquired, and learned that what we thought was an order for a repeat neuropsych assessment was actually the order for the one that Paul had done in early April. So, no appointment is needed to do that assessment, and the appointment we made to see Dr. Bauer stands as we scheduled it! That is a huge relief to me.

Please continue to be in prayer about this appointment (as well as the surgeries that are coming). It is set for July 23, several days after Paul's eye surgery. Paul wants to hear that he may return to work; pray wisdom for Dr. Bauer and peace and patience for Paul, and gracious acceptance of whatever decision the doctor makes.

Monday, June 04, 2012 11:19 PM, CDT

I'd like to share a few prayer requests particularly for this surgery. I don't think any of them are really new; most of them are things we've spoken of before. Paul is still bothered by the loss of ribs that is ahead, so pray, please, that it'd be only two or three. The fewer the number taken the less he's likely to be troubled by it. Then pray for rapid healing of his chest area, and abdomen, where the incision will be and where the ribs will have been removed. Pray especially that Paul will take advantage of the pain medication he is prescribed and offered, that he'd not tough it out and resist taking medication. Managing pain well actually advances healing, as more energy can go to the healing process rather than to coping with pain.

More broadly, pray for Dr. Walsh and Dr. Khoudaverian. Pray that they would have wisdom as the surgery proceeds, that they would be directed as they make decisions "on the fly" during surgery. Pray for the timing of the surgery--we will know sometime Monday what time to arrive and what time the surgery is expected to be underway...and it will still be open to last-minute delay if an emergency comes in.

Pray, too, that Paul will be given vision to see the positives of this surgery, that it is not solely or mostly "for appearance", which is his mindset. That is the most obvious aspect, but there are functional benefits to this surgery: Having an outer ear will aid some in hearing, as one of the functions of the outer ear is to help gather sound and funnel it into the ear canal. Dr. Walsh also spoke of possibly opening the ear canal a bit, as it is quite narrow. Exactly what he'll do about that will be one of those "on the fly, during surgery" decisions.

Overall, things for this surgery next week are pretty much ready. Keep praying peace for both of us as the days tick away. Pray that the children will do well away from home and away from us for two nights; it's perhaps the second time in their lives that they've been away from home and mom and dad for more than a day. Pray that I'd do well without them and Paul! That is going to feel very odd.

Shifting gears, now: One of the big things on Paul's mind has been getting back to work, and fretting about the eye surgery that Dr. Silbert recommended, how that would impact his getting back to work. As of today we've made some strides on both those issues--not fast enough to suit Paul, who'd prefer to be back to work tomorrow, but is conceding that he needs to go through the process to get there. (Do pray for graciousness for him in accepting the slowness of this process and the constraints that the doctor puts on his return to work.)

Let me back up, to help make this clearer. Back in April Paul and I met with Dr. Roehr for a neurosurgery follow-up. She made several decisions, most of which were along the lines of "Wait", and that was a blow to Paul. She recommended waiting to do the driving assessment after the ear surgery and gave us a referral for that. I filed it away in my mind and didn't rush to take action since the surgery was still in the future. I have thought about it repeatedly, but simply didn't have the umph to move on it, though I knew I needed to move it onto the front burner soon since the surgery was rapidly approaching. I think I will hold off till after the surgery, to see how quickly Paul rebounds physically, and then work out the details for that. I am smiling at the prospect that we'll go to the driving assessment, he'll be cleared to drive again right away, and he'll want to drive home...and should that be the case I will gladly shift over to the front passenger seat!

In addition to this, Dr. Roehr gave a referral for a follow-up neuropsych assessment with Dr. Thomson. I had tried to schedule that as we left the appointment with Dr. Roehr, but for some reason couldn't, and then (again) I haven't had the heart or energy to pursue it till now. So it is in the works, and I am waiting for a call from the scheduler to see when we can get in. Would you pray that we're able to get in before July 23rd, which is the date we were able to schedule a follow-up with Dr. Bauer, who is willing to take over some of Dr. Roehr's patients, since she left HCMC for another position at the end of April. If we're not able to have the assessment before that date we'll likely have to move the appointment with Dr. Bauer back, probably into August, and that would be disappointing to Paul, because he is really hoping and praying that at this follow-up with Dr. Bauer he'll at long last be given the return to work order he's been hankering for!

Regarding that, pray for Dr. Bauer to wisely decide, and for Paul to accept whatever he decides. I have tried to "put a bug" in Paul's ear, suggesting that he may not go back to a full "eight hours a day, five days a week" right off, that it might be half days, or three days a week, or some other schedule that would move toward full-time. As I understand it, once he has the return to work order he and his employer will talk and see how to orchestrate things. I honestly don't know how to pray about this, so I'll settle for: PRAY.

Upon the conclusion of Paul's appointment with Dr. Silbert this afternoon we scheduled surgery to correct the strabismus. Dr. Silbert explained again that he will do this as a staged surgery, meaning that he'll do stage one now, and stage two in six months or so. If necessary there might be a stage three surgery...but then he remarked that depending on the outcome of stage one Paul might not even need a stage two surgery!

Dr. Silbert advised that there be at least four weeks between Paul's ear surgery and this eye surgery. We met with the scheduler and had some "go round" about the date. I, as the family calendar keeper, looked at the whole picture of what is happening when in our lives, and pressed for a date that would be less difficult for me to coordinate matters for our children. Paul voiced that he wanted it sooner than later, but he yielded to my preference...and then as we were leaving to go and see if we could get the appointment with Dr. Bauer he told me that he'd asked twice if we ought take the earlier date and twice had a "yes" answer. He put the question again and for a third time had "yes". I wasn't thrilled with the idea, but I felt that I had to take seriously that he had a strong sense that the earlier date was better, so back we went to talk to the scheduler again and moved the date up a week. I trust that this was right, and that as events unfold we will see that God had his hand on this, and directed us rightly on the date we selected.

The strabismus surgery, then, has been set for July 18. It's a same-day surgery, and Paul is, I believe, the second case for the day, so it'll be in the morning, and he will be home by later afternoon or evening, barring any problems. Because it's more than 30 days away Paul will have to have another pre-op physical, since those are only good for 30 days, but that's fairly easy to coordinate. More challenging for me will be making the arrangements for the children for that day, which is complicated by the fact that Samuel has swimming lessons. That means that I would be asking whoever is caring for him and Emily to take him to his swimming lesson that day, and that feels like more of an imposition than asking someone to care for our children for a day.

For tonight, that is all I would say on this matter. It's more than a month away, and I am resting, trusting, in God to handle it. He has been so gracious to meet our needs and provide so abundantly for us all along, and especially as we face this ear reconstruction surgery; that gives me confidence that he will continue to do so, and this will unfold and be well done.

Friday, June 01, 2012 9:21 PM, CDT

Please continue to pray for Paul as the days leading up to the ear reconstruction surgery pass. It is hard for him to look beyond the fact that some ribs will be removed to provide the needed cartilage for the new ear, hard for him to fathom how he could manage without all his ribs. Pray that he would not dwell on the negative aspects, that he would be gifted with sight beyond this, to the final outcome of a useful outer ear and all. Pray that only two ribs are removed (the minimum number possible!), and that Paul's healing from that part of the surgery would be quick and complete, and he would find that indeed he really doesn't notice he has missing ribs.

 Friday, May 25, 2012 10:25 PM, CDT

Well, as if the ear reconstruction surgery, and the neuro followup and getting the return to work order that Paul is so wanting, and the possible or probable eye surgery wasn't enough to have on my plate we've added another possible surgical procedure to the mix! It's something that, according to Paul, was first brought to his attention a couple years ago, but he didn't pursue it then. Now he is bemoaning that he didn't "take care of it before", and even that he didn't take action on it two or three months ago, before we were on the verge of his ear surgery. He reminded me that our family physician had informed him of this hernia and had spoken of dealing with it when he had his pre-op physical before the expander surgery in December, but I hadn't really gotten it, and didn't take action. Because Paul understood that I was to be responsible for most everything in his life he didn't press me; he worried that I was handling so much and didn't want to bother me...a frustrating state of affairs, but so it was, and we've hashed that out some over the last few days.

Anyway, this hernia has been bothering Paul more so he called and was able to get in to see Dr. Riley a couple days ago, and was given a referral to another doctor, a surgeon, to consult about taking care of this. Paul, naturally, is NOT pleased with this turn of events, with the prospect of adding yet another surgery into the coming weeks or months just at the time he was anticipating a possible return to work. I have tried to encourage by reminding him that we have been making the best choices and plans we can, with the knowledge that we have, we've dropped the ball and now must deal with that. But even so, God has directed our steps, he's allowed us to fumble on these things and he IS still sovereign over all of it. Pray that Paul will relax and rest in that confidence, that this is God's timing even if it doesn't make sense to us.

The appointment with Dr. Schaal is set for Wednesday afternoon. I feel that it would be advantageous for me to go with Paul to this appointment, since it may involve scheduling surgery. Between the two of us we'd be more likely to catch all the details that one of us alone would miss. So I am puzzling over what to do about our children; having them come seems it'd be difficult, as I am not sure that having them in the room while we discuss matters would be wise, and I'm not comfortable with having them sitting alone in the waiting room at the clinic.

I have touched on wishing to give an update that focuses on some of the other details of Paul's recovery, particularly his return to work. He's been chafing so much about the holding him back on that all these months, considering that he could have done things at work, could have begun relearning skills...in my opinion overlooking or being blind to reality that he was simply not ready to manage the strain of work when his brain was still healing so much. He's yielded (not extremely graciously) to the doctor's decision to delay his going back to work. Now, as he sees it, he is going to get the approval to return to work just as he's having surgery that will hamper his ability to work for some time--he'll be in pain, have restrictions on what he can do (lifting, things like that)--plus additional surgeries over the next year (the follow-up ear surgeries, plus these for his eye and for the hernia).

For me, the biggest issue right now with Paul's returning to work is: "Who do we go to for the return to work order to be written?" Dr. Roehr had been the primary neurosurgeon following him and making these decisions, but she is no longer at HCMC. She gave us a couple options, but I am rather befuddled these days, and now am at a loss to know what to do, where to go. Would you pray that I would be guided in this? I have been thinking about it, and a few avenues to pursue have come to me. I may give the outpatient social worker a call and see what direction she can give me. I also have thought that it would help to call the neurosurgery clinic and ask what is scheduled for Paul, or when I need to set up another followup, and with whom since Dr. Roehr is gone. Additionally, Dr. Roehr had suggested having a driving evaluation done by Courage Center. I didn't move on that, which now Paul has said he's displeased by, as he thought it would be done two months ago (and I thought that Dr. Roehr had indicated that it should wait till this surgery was past--oops). I am fumbling and at a loss about who and when with the brain injury follow-up. I think Paul is supposed to have another session with neuropsychology and Dr. Thomson, so there is plenty to muddle through. Pray that these things would come together, and especially that we would get the return to work order.

As far as that is concerned, pray that Paul would trust that the restrictions that are put upon his getting back to work are for his and his employer's benefit. I believe that he expects to jump fully back into work right away--doing a 40 hour week, five days a week for eight hours a day. I've tried cautioning him that it may well be that he is limited to four hours a day, maybe only three days a week, at first, and would build up quickly from that as he adjusts to the stress of working again. I honestly have no idea what the particular parameters for his going to work will be; my understanding is that the doctor would say, "Here's what he can and cannot do," and his employer would look at it and figure out with him where he would start. Paul has shared that his supervisor has outlined some possibilities, but nothing is definite yet since we've no "return to work" order in hand.

Pray for the timing on this, and for the working out of every detail that is involved. Especially pray that Paul's enthusiasm for getting back to work would be restored; with the long delay he is finding that eagerness waning, and that is disheartening to him. He's worried about being useful to his employer, worried about being able to do the job, thinking that he will regain things more rapidly once he is working, frustrated that he doesn't think as quickly as he used to...rather a vicious cycle of thinking, and as he says repeatedly, all he has to do is think about and dwell on negatives. Pray he'd rest in God, and please keep praying for his brain to heal, for his thinking to continue to improve, for his eye to heal, for the ear surgery to go well, for any pain from the removal of ribs to quickly pass (and he find that his motor ability is not significantly impaired for the long term by this procedure).  

Wednesday, May 23, 2012 6:09 PM, CDT

Counting down: two weeks, six days...

The countdown is underway for Paul's ear reconstruction surgery, or more accurately, the first and major surgery. Well, make it the second and major surgery, as the first was to insert the expanders. He and I met with Dr. Walsh Monday morning for a final pre-op consultation. I am thankful indeed that by the time we arrived at that appointment Paul had calmed down or at least was not dwelling so much on the negatives as he saw them. He still is not thrilled about the prospect of losing ribs, but seems to be coming along on acceptance. I imagine that it has been helped by a couple comments about "you'll have plenty of ribs left!" that I have relayed to him after friends have said it to me, and further aided by Dr. Walsh nodding in agreement on Monday when I put forth my conclusion that he wouldn't even be doing this if it was going to have long-term detrimental effect on Paul's functional ability. He also agreed that Paul will have many ribs left.

With that appointment behind us we are definitely in the thick of making arrangements. Paul is awed that people are so ready to help out with our children; by God's grace where our younger two will be both the night before and the night of Paul's surgery has already been worked out...it was "in the works" two or three weeks ago!
 
It has been somewhat a journey for me to decide that having Emily and Samuel spend two nights away was best. I hated the thought that it would seem that I was abusing the willingness of the body to minister to us during this by asking that they stay with someone for two nights. As the circumstances unfolded for Paul's surgery, though, it became clear to me that it would serve their and my interests best to do it thus. Dr. Walsh has scheduled (requested?) an 8:30 AM surgery time, which means we need to check in at 6:30 AM, and that means we must leave home by 6:00 AM, perhaps a bit sooner, to get there via the light rail (more on that presently). In other words, if Emily and Samuel didn't spend the night at someone's home, where they'd be for part or all of the day while Paul has surgery, I'd have to get them up VERY early and drive them to wherever they're staying...and the host family would likewise have to be up VERY early, and it would add stress to me on a morning when less stress would be greatly appreciated! So I couldn't escape the conclusion that having them somewhere the night before was a wise move, and God provided for that.
 
It was a little harder to come to the conclusion that having them spend the night somewhere the evening of Paul's surgery was best. That was really where I struggled with the thought that maybe I would be viewed as selfish and misusing the willingness of friends, if I planned that they stay overnight with another family. Then I began to reckon with the uncertainties of the day of surgery: What time will surgery actually begin? How long will it actually take? How long will it be after surgery before I can see Paul, before he's moved to a room? What time will I get home? The more I thought about those questions the more I felt that it would be stressful to be watching the clock and needing to constantly update plans. I pictured myself calling to say, "I'm not home yet, could you give them supper?" "I'm still not home, could they spend the night?", and that simply felt too heavy. Far better for them to be settled somewhere and not wonder from hour to hour when they would go home. Far better for me to know they were settled and I could just go home and unwind from a long day at the hospital. So, again, by God's grace, this detail has been worked out and the younger children are covered for both days, and I'll even have a free morning before all our children are home that Wednesday!
 
That does bring up a detail that is not yet settled: where our oldest will hang out the day of surgery. There are different scheduling issues for him, namely that he has summer session and I don't know all the timing issues for him. I have decided that he will get himself out the door that morning (since I and Paul will be gone or going as he also heads out), and then that instead of coming home in the afternoon, or even in the evening, I will require him to go to a friend's and spend the night, getting to summer session from the friend's the next day (and coming home after school on Wednesday). This will be an non-negotiable; pray that he will accept my decision and not argue that I wouldn't know he was home, he'd leave me alone. Yes, he would not bother me, he'd let me be, but I would be aware of his presence in the house, or slightly on edge wondering when he'd pop in. Therefore, to reduce my stress on that day, I will ask that he make plans to stay at a friend's...and it's not as though he wouldn't be doing so anyway, it's just that it will be "demanded" of him, not his choice.
 
Another detail that has yet to be figured out is my getting home from the hospital the day of surgery. As I said earlier, our plan is to take the light rail down to the hospital, since it is very convenient and would eliminate the need to pay for parking for the whole day. However, it does present the dilemma of what do I do about getting home if it should end up being late, say after eight in the evening, and dark? I would not be comfortable walking home from the light rail station by myself. So I am looking at needing a backup plan for that, someone who would be willing to be on call to pick me up at the hospital if necessary and give me a ride home.
 
As of now, this is how all the pieces are falling together for Paul's surgery. He is scheduled for a pre-op physical next week, and that will be the last major activity leading up to surgery. He will be in the hospital for a few days following surgery, and then we will be facing the next matter, that of going through the hoops of followup (neuro) and perhaps the return to work order being given. I hope to do another update soon to focus on those issues, since it's a whole ball of wax in and of itself.
 

Tuesday, May 15, 2012 9:47 PM, CDT

These last couple weeks, since the last update, have been wearing ones. Relational turmoil within the home has sapped my energy (and that is at a low ebb anyway!), and those issues are so sensitive that sharing much about them here is unwise. We've had some rocky moments, and I believe that there is good coming from them. Things still can become volatile quickly, but there IS a greater sense of peace, and encouragement that God is at work to help and heal. Please continue to pray for all of us as we work together through things.

By far the biggest stress these days is Paul's obsession (his word) with one particular dimension of the coming ear reconstructive surgery--namely the removal of one or two (perhaps more) ribs to provide the cartilage needed for the new ear. He is fixated on the loss of one or several ribs; he dwells on the thought that he'll have a gap in his side, he'll have pain, he'll have permanent functional impairment...and all this just when he is MAYBE going to receive clearance to go back to work. To his thinking, the timing is horrid, as he'll be in pain and hence unable to work just when he will be ready to go back to work. He'd like to cancel the whole thing, and seems deaf to statements from me, from the doctors, from others that urge keeping his eyes fixed on the end result. Yes, there will be pain, but Dr. Walsh will prescribe pain medication to manage that. Yes, he will lose a few ribs, but he'll have quite a few left! Dr. K implied that once he's healed he will not have any noticeable functional limitations due to fewer ribs. Though it's not been said, I have inferred that Dr. Walsh would not even be doing this--taking ribs for cartilage to craft a new ear--if it would significantly impair Paul's physical well-being!

This is difficult for me to endure. I want to listen as Paul talks about his apprehensions, want to be a sounding board for him, yet I am so unsettled by his fixation on the negatives and his inability to put much trust in the encouragement that Dr. Walsh has spoken since the beginning, that in the end this will be worth it. It's unsettling to have him now questioning our decision to go ahead; I have said we made the decision based on what we knew and understood at the time, so second-guessing it now only seems to feed doubts. We are scheduled to see Dr. Walsh Monday morning for a final pre-op consultation, and I am afraid that Paul is going to go on and on about all his negative thoughts, perhaps even dwell on "let's just forget it"...and then all these months of skin expansion and everything else that's gone into this will be wasted, and it won't really do anything to speed up getting back to work, or having the eye surgery. Please pray for him, that he would trust God, trust that the surgery was the right decision, trust that the ribs that are extracted will give Dr. Walsh just the kinds of cartilage he needs, trust that he will ultimately not notice any significant functional impairment, trust that having a new ear will be greatly beneficial. Pray for me to be given grace to trust too. Part of me wants to tell him to stop obsessing about the negatives and fix his attention on the end result, trusting it will be good. Part of me even wants to tape his mouth shut on Monday so he doesn't harp on the "let's forget it" theme when we see Dr. Walsh. Pray that God's word about putting your hand to the plow and not looking back would echo in his mind and redirect his energy. We put our hand to the plow months ago on this; it does no good to look back and doubt.

Another thing that is weighing on me--dealing with all the logistics for the surgery is huge, and I hope to speak to that in coming days here--is managing this next round of neurosurgery follow-up, neuropsychology assessment, therapy, getting the return to work order (and who will that come from now?), and legal steps. I need to find a notary, as we've papers that must be signed in such a person's presence, and I need to deal with a scheduling dilemma. I am tired, and the thought of having to find the right person to talk to about the medical things is overwhelming.  The legal stuff isn't as overwhelming, but I find myself giving in to inertia quite a lot these days. I manage to do what must be done, but it takes much longer than I'd like, and far too often I am leaving it till it becomes urgent or imperative that I act, and then decisions become crisis decisions and are not always the best.

Monday, April 30, 2012 7:23 PM, CDT

Two appointments...
and a swing in emotional state. Actually, there's a lot of emotional swing around here, as all of us cope with the stresses of one member of the family recovering from a TBI. It was Paul who swung from being fairly cheerfully accepting of the timing and such of the ear reconstruction surgery to being discouraged by Dr. Silbert's remarks about his eye (and specifically his vision), the eye surgery that he recommends, AND the fairly blunt declaration that Paul is permanently changed after the accident. He is doing well, and he will be able to do much; Dr. Silbert's emphasis was that expecting any medical procedures to restore him to his pre-accident state is simply setting himself up for disappointment. He may and by God's grace will regain quite a lot, yet he IS different, changed, as a result of the accident.

This was not an easy thing for Paul to hear. He took it well while we were with Dr. Silbert, but I could see the defeat in his bearing after we left, and I could hear it in some of his words as we wrapped up the appointment. Dr. Silbert didn't completely crush Paul's hope, but he delivered the bluntest "things are changed, the goal is to make this new life the best it can be, learn strategies to manage with what is now" remarks that Paul has heard since this journey began. PLEASE pray that Paul will absorb these things and keep focusing back on God, roll his disappointment and depression over these developments onto God, rest in and trust in God's steadfast love, and go forward with hope that it will be well.

Going backward, Dr. Silbert's evaluation of Paul's eye was that there has still been no movement to indicate that the nerve controlling the muscle that pulls the eye outward is beginning to work again. In his opinion, then, it's unlikely to; it still could, but there's not much to encourage that. Dr. Silbert's recommendation, then, is that doing surgery (and he added that he would likely do it in two stages, so there'd be two surgeries) is the direction we should go.

Then he began to explain using a dismal brush--not black, and not that it would be the worst outcome--but the less-than-best results. Paul believed that with the surgery his vision would be restored to what it was before, and in particular that his depth perception would be back to normal so he'd be able to do work that he had done before, and play catch with Samuel. Sadly, according to Dr. Silbert, while there might be some improvement in that more likely Paul would have to continue to adapt and use different strategies to cope with visual challenges. He explained that many people do learn how to deal with what is in essence a frozen eye (that's my way of describing it) and do very well with using the "good" eye to determine depth and distance and such.

Dr. Silbert went on to explain what he would do in the surgery, which would be to bring Paul's left eye back into a centered position. It would not move a lot, since the nerve that controls the lateral movement is the one that is not connected (very probably severed during the accident), but he'd have an easier time managing, plus it would LOOK more normal.

In light of Paul's ear surgery coming up, and the fact that it'd be wiser to not have the ear and eye surgeries too close together, we decided to wait till July or August for this surgery. Paul will see Dr. Silbert again in early June and we'll probably schedule the eye surgery at that point. I asked and Dr. Silbert said that typically adults take a week off with this sort of surgery, so that wouldn't be too bad if Paul is able to begin returning to work in July. Our prayer requests about this are for the best decisions about the surgery...and even more urgently from Paul that God do a miracle of healing, to restore nerve function and normal vision in his left eye so these tasks he does (wants to do) and playing ball with Samuel are possible.

Backing up still further, to the morning's appointment: We met Dr. K. and had some conversation with him--asked a couple questions about the rib removal and were positively impressed with the answers. For Paul the biggest was that he would not experience much functional impairment from the removal of two ribs (Dr. Walsh inserted that at least two ribs would be removed). I was surprised but understanding of the news that it will be adjacent ribs that are removed (so there's only one incision). Only if they aren't able to get usable rib cartilage from the right side would they take a rib from the left side; Dr. Walsh told us that normally they'll take the rib(s) from the opposite side, so since it's Paul's left ear the ribs would come first from the right side.

As far as the time of surgery goes, Dr. Walsh is trying to "lock in" the first slot of the day. That's not for sure yet, it's what he wants and is trying to get, but really, until 24 hours before surgery they don't confirm the surgery time, and even then it can be changed if there is an emergency trauma case that must go into surgery. However, he advised that I plan for an 8:30 surgery time, which likely means getting there by 6:30 a.m. That certainly gives me some direction for what to plan for our children, though I may need to have plans B and C up my sleeve depending on how things develop!

Please continue to pray for this surgery and for all the details to settle out, from surgery time to pre-op physical to where the children will be (and when) to my getting home afterward (which will be partly determined by when the surgery ends). Many details, much unknown, and so much grieving ... pray God's peace and our trust in His perfect plan with all this. 

 

Monday, April 23, 2012 3:51 PM, CDT

The date is set...
Last week the matter of when Paul's ear reconstruction surgery would be scheduled was discussed.  Today that same matter was the first order of business when we saw Dr. Walsh for the (last) weekly fluid injection.  

Dr. Walsh had told us last week that he had a couple dates in June in mind for us.  Squeezing it in earlier, in May, as I was asking, was not really a viable option but he kindly heard my reasoning and said he'd look at the possibility, but most likely we'd end up with a June surgery date.  My answer was, "God is in control, if he wants it to be in May he'll make it happen.  And if he doesn't, we'll accept that as his decision."  

During the week, then, Dr. Walsh tackled the scheduling of the surgery.  Because it's an involved procedure he allows a full day for it...and because of the amount of work he needs to do in Paul's case, he elected to pursue a multi-team approach.  He explained this morning that were he doing it all himself he'd go from doing the prep work at the ear (removing the expanders, preparing the skin) to doing the rib removal, and then he'd have to carve the new ear structure.  All in all it'd be a lot, and his fatigue level would be high.  So he did some asking of colleagues and found a cardio-thoraciac (I think that's the correct term) surgeon who could do the rib removal, thus freeing him to focus on the site preparation and carving out the new ear, AND shortening the overall surgery time.  

Those were the "good" aspects of this, in Dr. Walsh's opinion; the "bad" was the the date that the other surgeon is also available is June 12, which is a little later than we were hoping.  However, as I said earlier, we were walking with the mindset that God is in control and we would trust his timing.  This is how it's coming together, Dr. Walsh feels good (or shall I say positive?) about this arrangement, there are more pluses than minuses to it...so we accepted this date and now will be moving forward to organize and coordinate things.  Next Monday we will have a meeting with Dr. Walsh and Dr. Khodaverdian (and I hope I have his name spelled correctly--I think I shall be referring to him as Dr. K!), so we'll have a chance to meet him prior to the surgery.  We will have one "check-in" appointment with Dr. Walsh between then and the surgery.  The other main coordinating/organizing issues will be getting a pre-op physical for Paul scheduled within 30 days of the surgery, and figuring out arrangements for our children while I am at the hospital while Paul is in surgery.  At this point I don't know the surgery time, so finalizing those details will have to wait till closer to surgery.  

Dr. Walsh also made the decision that today would be the final injection of fluid into the expanders!  We weren't totally at the maximum, but were getting close, and he is pleased and satisfied with the degree of expansion (i.e., the amount of skin available).  Also, he said, that having a little longer for the skin to stabilize will be beneficial...though it leaves Paul with an extra couple weeks of, "Hey, look at that guy!" remarks.  I keep saying I could make him a hood to conceal the expanders, but he hasn't taken me up on that.  

Pray that all the details for the surgery work themselves out--the time, the pre-op physical, the coordination of the two surgeons and all the other members of the operating team, for the surgery itself to go wonderfully well, that Paul's recovery would be rapid and complete.  Pray, too, that his recovery from this surgery and Dr. Walsh's clearing him for work (whether with restrictions or not will depend on what sort of work he would be doing, if it involves heavy lifting there'd be more restrictions for a time than if it doesn't) would dovetail with Paul getting the return to work order that he is so eager for.  We still have to figure out from whom we'll get that order, since Dr. Roehr has left HCMC.  I trust that will resolve, but please keep praying for guidance on that, and for Paul to continue to heal and regain the functional ability (and improve the strategies to cope and work around his limitations).

Saturday, April 21, 2012 10:40 AM, CDT

I have been wishing for several days to sit and write another update--one of those "my perspective" times where I let you in on what I am thinking and feeling and fearing.  Had I been able to get to this sooner this week when I was fuming this would've had a different tone than it will have today, and I say, "Thank you, God, that you didn't let me get to writing here till today."

What I'm finding as I sit here now is that a good deal of the emotions that were driving me to vent have settled.  I believe that a large factor in that was my finally grasping, as Paul and I had a somewhat heated discussion one afternoon, that he'd somehow understood that he would have all four ear surgeries in JUNE.  I had not understood why he kept harping on the "four surgeries" matter, because it was clear to me that these surgeries would occur three months apart.  So I was hearing his dwelling on it through the filter of "This surgery (in June) is the major one.  The others, by comparison, will be minor.  Once you've healed from this one you will most likely be cleared, both by Dr. Walsh and by the neurosurgeon, to start getting back to work gradually."  I saw it as likely that he'd work during the months between surgeries, then need to take off a few days for the followup surgeries.  Paul, on the other hand, heard "four surgeires" and surmised that they would all occur in June so he'd just barely be recovering from one and would go into the next.  So he'd be in more pain and less able to do things, just when he was cleared to get back to work.

With that mindset, Paul kept questioning if he ought even go through with the surgery.  It was frustrating for me to keep hearing it again and again, since I would answer that he'd be back to work after he'd recovered from the surgery, probably middle or late June.  I kept missing his misapprehension about the series of surgeries, and we kept looping round and round about it.

Thankfully, that cycle was broken Thursday afternoon, though we had some moments of communication conflict before we sorted it out.  Paul clearly heard that it's NOT four surgeries in June, and I hope that he grasped that the followup surgeries will be much simpler (relatively speaking).  And I clearly heard that he'd misunderstood, which siphoned away a lot of my exasperation with him harping on it (that's how I perceived it).

So.  From Monday through Thursday morning, till early that afternoon, I found myself growing more irritated and exasperated listening to Paul complain about surgeries, and therapy that isn't doing anything to help him relearn his job responsibilities, and how he's wasting time coming with us to church on Wednesday nights, and to Musikgarten, how he could be working so he regains knowledge, be really useful to his employer.  I tended to dismiss his comments, or take them from the perspective of "He wants me to fix these things for him, and I can't."  I would counsel that the doctors and therapists are working to make his return to work successful, trying to give him tools to manage so it IS a sucess when he goes back to work (and I still think how encouraging it was to hear Dr. Thomson say he believes Paul will resume work when he's recovered), and those remarks seemed to simply roll off Paul.  To me, then, it came across as Paul not giving credence to anything I had to say...and he would argue he did but...  So I would think (and did eventually say) that unless my answer, or the doctor's answer, or the therapist's answer squared with what Paul wanted he wouldn't accept it, and he'd keep pushing to get the outcome he wanted!  A lovely cycle, that.

I've been making it sound like we calmly and sweetly resolved this difference on Thursday.  That's not quite the case, so I want to take a few minutes and go back to how frustrated and exasperated, discouraged, defeated, and frightened, I felt--have been feeling!  Ofttimes these emotions would trigger reactions that were not in the least gracious, and it's not pleasant to admit that.

Paul's obsession, to me, with getting back to work hurts.  Rationally, I know that work is huge to a man, and not being able (allowed) to go to work stings.  I would hear his focus on going to work, and especially his disgruntlement about the delay of a return to work order, as a dismissal of US, of me and of our children.  So many of these issues rankle for both of us, but in completely different ways!  From his perspective going to work WAS for us, for me and for our children--he was working to provide for us!  Being barred from that meant, to him, that he was NOT and is not providing for his family as a man is supposed to do.

Added to this was the bite I would perceive in his comments that I am in charge, I boss him around, I give him orders, and that's okay because the doctor told me I make all the decisions.  That really rankles for him, and it rankles for me when I ask his input so I can juggle and balance the needs of the family and the household.  This is a spot where I REALLY steam; I'm bearing the load, managing five people's lives and needs, keeping the household running...and I feel that each of the other members of the family are only concerned with their own wishes and wants and needs.  The message I hear is, "Cater to me and what I want right now."  That gets my back up and I start lashing out, saying things like, "You want me to do all the work, and jump to your bidding, you want to enjoy privileges without having to do any work."  I'm tired, I feel used and unappreciated, and I want them to pitch in, to do things that need doing without me having to tell them every little detail!  It's like, "Open your eyes, people!  See the piles of dishes in the kitchen, see the clutter on the floor, see the crumbs on the table, see the dust, see the laundry to fold, the toilet that needs scrubbing, the meal that needs preparing, and GET BUSY!  Don't wait for me to do everything, or tell you what to do."  Yes, as chief household operator I do need to give direction, give structure and assign responsibilities, teach and train when needed.   The bad thing is, when I start squawking about what they're NOT doing, yelling at them and demanding that they do this, that, and the other thing, we become adversaries, not teammates.  There's compliance, but it's just enough to get me off their backs, and there's sulkiness and rebellion underneath.  Blegh!

All right, getting back to where I was going:  It's as though Paul is blind to the reality of things.  This "she's the boss" was issued back in November when he was discharged from Knapp Rehab.  It was necessary at that time, as his decision-making ability was very hampered by his TBI, something he couldn't clearly see.  I thought that I was being considerate and would ask him what he wanted, or what he needed to do, so I could weave our day together, getting all the various pieces in place.  When he would respond with, "Do whatever you want, you're the boss," it hurt; I would hear him telling me that he was unhappy with the situation, he perceived that I was enjoying being the boss and liked usurping his role, belittling and humiliating him by running his life, not giving him any freedom.  He couldn't see, somehow, that I was trying to walk that balance between his autonomy and the limits of his condition.  And somehow now he can't see that most of the limits placed on him--not being home alone, not supervising our children, not being able to go places by himself--have faded out as he's been home and I've seen that he is capable (and had that assessment confirmed by medical folks).  He doesn't see that I want and seek to honor him as I carry this burden of leadership, or that I want to return it to him as he is ready to take it.  Am I holding it too long?  Too tightly?  I want to say I'm not, but I'm unsure.  And that is another ache to me:  the stresses over these months has brought me to a point where I feel that I know nothing anymore.

Well, that's some of what I was feeling for the early part of this week.  By God's grace when Paul and I crossed swords (figuratively) on Thursday we were able to dial down enough that we started hearing each other, and things got through.  Since then more pieces are starting to get through.  Paul has said, for about the first time, that he is really grasping that he has been changed by this, his mind doesn't work as it did before, and it will take a long time to recover.  That was just this morning!  That was encouraging for me to hear.

Encouraging comments like that from Paul are infrequent.  Much more often does he express dissatisfaction about the delay in his going back to work, how (he thinks) people see him "hanging around" at church, "doing nothing", wasting time....  It's that perspective of wasting time -- anything short of being at work is a waste of his time -- that really gets me riled.  He could lavish time on me and the children, he could tackle many projects around the house (and some of those could be very challenging and call him to stretch his cognitive functioning, which he wants to do!).  And he'll do things when it's clear I believe they're good things to do, or I request that they be done.  And that cuts at me, for it says that he isn't wholeheartedly doing it, not because HE wants to.  He does it, and makes sure I know he's doing so only because I'm the boss and said to do such and so.

This is hard.  Waiting is hard.  Misunderstanding and hurting and being wounded is hard.  Not knowing is hard.  And in all the hard pieces God is GOOD.  He holds and orchestrates, and it is truly by his grace that Paul and I and our family have not been torn apart.  We have been shaken, we are being sifted, and we are finding the solid Rock under our feet.  It's not easy to keep getting up and facing this battle, to wait and walk through surgeries and issues, especially issues that trigger misunderstanding that leads into conflict that puts us at odds with each other as we react and lick our own wounds, oblivious to how we've wounded each other in the process.

Pray for us.  Pray for peace, for patience, for the timing of the major ear surgery (and the subsequent ones), for Paul's crossed eye to recover on its own and for whatever surgery that may require, for the timing and process of his return to work.  Pray that he and I would both acquire purple eye and ear filters so we see and hear each other well, and grow together through this.

Monday, April 16, 2012 7:39 PM, CDT

I had decided that I wanted to bring up the possibility of moving into what Dr. Walsh calls the stabilization phase prior to surgery during Paul's appointment this morning.  Paul is bugged by the juxtaposition of going back to work and the surgery, which would place restrictions on what he can do (i.e., lifting and such) temporarily.  I began thinking that maybe if we ended the fluid injections and started the four weeks of stabilization surgery could be in mid-May, and then possibly the "return to work" order would line up with when he'd be physically recovered sufficiently from surgery (having Dr. Walsh's "all clear").  

When I presented this today Dr. Walsh answered that he has tentatively set aside two dates in June for us...that was the original timing, based on how long it would take to fully expand the skin.  He also said that usually surgeries are scheduled about two months out (so we're actually less than that with a June surgery date).  He's willing to take a look and see if there are any open dates in May; one determining factor is that he needs a full day for Paul's surgery.  

Would you please pray with us that, if God so wills, a May surgery date would become available?  To my human planning this seems wise, as it would flow into Paul's returning to work (gradually!) sometime in June.  But that is my human understanding, and I keep reminding myself and Paul that God is in complete control of this.  He has had the timing on all the pieces in hand since the moment the accident occurred, and when we've done all we can to work it out as we think seems best we must leave it with him and submit to HIS plan.  It is far better than ours!  

Pray also that Paul will be helped to see beyond his desire to get back to work, and take advantage of this opportunity he has to pour time into relationships.  He is often frustrated that he cannot be at work, and is so fixed on that, and on studying work manuals and such, that he implies that giving time to me and our children and to things that need doing at home (and there are PLENTY of projects that could be tackled!) is of no value.  He does seem to have glimmers about that, and is voicing the thought that caring for and about us is kingdom work too, so I know he knows truth here.  Pray he'd keep getting it.  

And a third prayer:  Pray that Paul will rest about the actuality of the surgery.  He is most put off by the fact that Dr. Walsh will be using rib cartilage, meaning that he'll have some incisions to the chest/torso.  Those will give more pain, Dr. Walsh has said, and will be the reason his activity will be limited for a few weeks after surgery.  Pray that Dr. Walsh only need to take two ribs (he's hinted he may need three or even four), and that Paul would recover astonishingly fast from this.  Pray peace for him now during the waiting; I suspect anticipating how it'll be is more bothersome than the reality will be (not that that won't be bothersome, but thinking about an unknown can really pull you down).  I feel that Satan is fixing Paul's attention on the negatives, and that is contributing to his anxiety about the surgery.

Friday, April 6, 2012 10:15 PM, CDT

A most encouraging interview Today Paul and I met with Dr. Thomson to go over the results of his neuropsych assessment.  It included an "interview", where he and I had opportunity to talk through some of the symptoms and behaviors and such that we were seeing or experiencing.  A student was also included in this session; she had actually done the assessment last week, and then Dr. Thomson was involved in writing up the report.  So the questions and comments bounced around from one to another of us, and we kept wandering on little tangents, then back to the matter(s) at hand!

It was most encouraging, as we talked through the test results, and throughout the whole interview, to hear Dr. Thomson say again and again that Paul IS doing very well.  The outcomes of various aspects of the assessment show that Paul has made significant strides forward in functional ability.  Yes, there are still areas where he struggles, but those are areas where healing still needs to take place, and as that physiological healing occurs the function will likewise improve.  In general, he needs more time and some cues, so Dr. Thomson is very hopeful that Paul will indeed be able to go back to his work in coming months.  Not yet--it is better to wait and work on things, to be very ready to return to work SUCCESSFULLY than to rush and get back now and find that it's not a good outcome.

As an aid to preparing Paul to get back to work Dr. Thomson asked that he write a description of what a typical day at work would be like--what does he do, how does he do it.  That will give the therapists direction as Paul continues therapy; they will be able to integrate those things into the therapy they do, which will (hopefully) advance his ability to perform the duties of his job.  We will be working on that, perhaps even tomorrow (in the midst of all the other things on our day's agenda, like preparing for Easter Sunday).

Dr. Thomson approved the mention Paul made of the prospect that when he is ready to return to work he might be scheduled for a different tour where the pressure would be somewhat lessened (rather than working when the machines are running and it's more of a crisis mode--must fix machine so sorting can continue--he'd be on a shift where he's doing more routine maintenance on the various machines.  It is a blessing that he has an employer that is willing to work with him, with the parameters that are part of his life now, and help him get back to doing the best job possible.  We have long held the hope that Paul would get back to work; today's interview had the most overt "I think he will get back to his job" tone.  Coming from the neuropsychologist, that is VERY encouraging!

As always, there are worries that keep creeping in--the uncertainty of just when Paul will go back to work, will it be before he runs out of sick time and vacation, what will we do if that happens, what about if he has to start at part-time and there's no vacation or sick leave left to cover...I could easily tie myself up in knots about things.  So I keep coming back to what I have said before, "God is in control."  None of this--the scheduled appointments, the therapy, the assessments, the surgeries that are coming, the timing of when he'll be ready to go back to work, start driving, do this and that and the other thing--is out of God's control.  And none of it has caught God by surprise.  I, and Paul, must take the working out of things as God's providence.  That's especially crucial when we've tried to arrange things as seems best to us and it doesn't work as we think it ought; I have learned to say, "Well, I did my best, and it didn't go as I wished it would, so I have to accept that this is God's plan."  That helps, and Paul is slowly coming to respond in like fashion.

Pray that we will keep casting our cares and worries upon our Lord, who is so clearly at work in this!  Pray that the pieces come together in just the right way and at just the right time.  Pray for Paul's continued healing, especially his ability to express himself well.  Dr. Thomson stressed that this is an aspect that is very public--it's what others SEE--and it's not an accurate reflection of how he truly is.  I'm trying to remember how he put it, but it's not coming clearly to me.  At first glance, Paul appears to be less capable than he truly is, but as he performs and interacts he's able to prove himself capable.

Pray, too, that we will get the job description done so the therapists may begin drawing on it as they plan the sessions for Paul.

 

Wednesday, April 4, 2012 8:05 PM, CDT

Disappointment and encouragement

Today's meeting with Dr. Roehr closed with both disappointment and encouragement. The disappointment was yet another deferring of the return to work order--a major letdown for Paul, as he had been so sure that it would be granted.

Though Dr. Roehr did not give the full return to work order that Paul had hoped for she did allow for visits to the workplace, to shadow fellow employees and have opportunity to reconnect and spur the recalling of how to do things.

A couple things played into Dr. Roehr's decision to hold off on the return to work order. First, Paul is slated to have ear reconstructive surgery in a couple months (as yet unscheduled), so it seems wiser to wait till that is past for him to gradually return to work rather than start now and be back out for three weeks or so just as he's settling in. Second, the additional time and continued therapy that he will have may be instrumental in better equipping him for success when he does start back to work.

God has been gracious since this decision was made and has helped Paul to be more accepting of it. He complained that it's ridiculous, the therapy won't really do much to help him, he'd be better off studying his manuals for hours each day than going to the therapy...those were comments he made on our way home after the appointment, along with bemoaning that he'd spoken of possibly being able to come back to work after today when he was visiting yesterday.

Another smaller disappointment was the decision to hold off on checking Paul out for driving. The strabismus is a major factor there, but another issue is the present reality that Paul's reactions are still a bit slower than before, and that could be a problem when driving, when quick response is needed. Dr. Roehr told us of a service (through Courage Center) that could test Paul, both on the written and behind the wheel, to determine if he is a safe driver post-accident. That evaluation is postponed to sometime in June, after he's had the ear reconstruction surgery. Until then I continue to be chief chauffeur, and we'll ride the light rail. Or walk, or bike. And yes, Paul does have a bike again...but the helmet issue is creeping into the picture--more accurately a discussion about wearing a helmet!

So those were the disappointment aspects of today's meeting. On the encouraging side, Dr. Roehr urged Paul to look into doing some volunteer work--something that would serve the church, or the local library, or some such organization AND that would call forth cognitive functioning that needs to be improved ... but in an enviroment that is safer, where his employment and our family's financial well-being are not risked. She described it as being a win-win situation for Paul and for the organization. And those are only two of the benefits; there's also the flexibility of when he'd be volunteering (with ongoing therapy that is a definite plus), and giving him (more) reason to be up and doing, to shower and eat and get out the door to serve. This is a prayer request, that Paul (and I) will find the right volunteer opportunity for himself, the one that will answer his needs and satisfy the organization's needs as well.

Dr. Roehr briefly went over the results from Paul's neuropsych evaluation with us. He and I will sit down Friday morning with Dr. Thomson to go over it in more detail. It was hugely encouraging to both of us to learn that there had been marked improvement in all twelve areas that were asessed. Some had more improvement than others, so there are a few where he still needs more cues or assistance to succeed, but overall--"Wow," was my initial reaction. This certainly gives hope for the future!

So. Where are we today, with what's coming? The past week or so has been somewhat a swirl of change coming, and this appointment with Dr. Roehr has sort of capped it. The swirl is settling, and things look like this: Paul will have another neuropsych evaluation in June, after his ear surgery, and we'll have another follow-up...whether with Dr. Roehr or Dr. Riley, our family physician, is still to be decided...about that same time. That will be the next "return to work" order possibility. Dr. Roehr wrote the order for the neuropsych eval in her notes today, and I'll call to get it scheduled tomorrow (even if I later have to reschedule it, once I know when the surgery will be).

Based on the updates from the therapists Dr. Roehr instructed that Paul continue with physical therapy and speech therapy twice weekly, and with the rehab pyschologist every other week. With several people observing that Paul seems anxious "talk therapy" was deemed the best way to help him cope with the feelings that manifest in anxious behaviors, especially since medication had had side effects that hindered Paul's physical condition. I expect that Paul will go to and from most of these on his own, via light rail; I (and usually the younger two) will continue to accompany him for the fluid injections on Monday, but those are likely to go only another three or four weeks. I like to be present for those, especially as we move closer and closer to the surgery. I anticipate that by end of April we will have the surgery scheduled, that we will get as much expansion as we are going to. That will usher in four weeks of stabilization, barring any problems that necessitate hurrying up the surgery (we are praying all continues to go smoothly with the injections, and with the stabilization, and then the surgery). Even if the children and I go along for the injections we would possibly head home after that appointment while Paul goes to his therapy sessions and then comes home when they're done.

The one therapy that is ending is occupational therapy. That's not a very big change since three others are continuing, but it IS a change. Jen stated in her update that Paul has gone about as far with her as he can.

Paul had his vestibular assessment today. Based on the papers he brought home he was experiencing Benign Paroxysmal Positioning Vertigo (BPPV)--a bothersome but not serious problem. So he had, so far as I can figure, a canalith repositioning procedure, the purpose of which is to help some inner ear particles that are normally still to settle back into the correct place. I believe he had this done today because he's been told to sleep in the recliner tonight, as he needs to keep his head upright. He was scheduled

Tuesday, April 3, 2012 3:35 PM, CDT

My time to write last night was short, so I didn't get to things that I had had in mind to touch on in the update.

By God's good providence, Paul is down at the post office right now, having a chance to shadow someone around and get a bit back into the groove of work. He is not "on the clock", but is very happy to have the opportunity to be there. I have heard that he is talking with his hands--very typical Paul!--and it seemed to be going well. That was about five minutes into things, so I'm looking forward to hearing more later.

I spoke of the possible "return to work " order that Paul is hoping will be given when we meet with Dr. Roehr tomorrow. Paul is sure that it will happen...I am hopeful but not as confident as he. We were talking about this matter earlier this afternoon and he commented that he believes he could have gone back to work as soon as he was released from Knapp Rehab (back in November). He also spoke of his concern about being let go in light of postal economics, indicating that that is one reason he's been so urgent about going back to work. That is a legitimate concern and certainly has been a piece that has crossed my mind. I answered, in part, that while that is a real point to bear in mind I am believing that Paul will find that he regains much information as he begins to work again (I believe that a lot of information is still "in there" and will become accessible again as he works), and I am choosing to rest on the "we will do all we can to get him back to work" I have heard from the supervisors, until or unless circumstances make clear that that is not the way things are going. It is scary, so I keep reminding myself and Paul that God is ultimately in control on this, and we must keep trusting him.

During that conversation I also touched on the very real likelihood that his return to work will be gradual, not all at once. Back when he came home from Knapp Paul was surprised by how much more exhausted he was. He felt that he was not doing as much in terms of therapy as he had been doing while in the hospital, so why should he be more tired? I felt that it was due to the increased social interaction--more accurately, the increased volume of social interaction, with five people in the house and multiple interactions going on. He couldn't fathom that. So I expect that he'll need to go back step by step, though I don't know exactly how that might look. One possiblity, which I tossed out (and I hope that he doesn't glomp onto it and think that this is how it'll be), is that he'd start with half days, maybe only three days a week, maybe five, because I believe that he will be bushed after that much time on the job. Then maybe he'll go up to six hours a day, maybe mixing six hour days with four hour days till he's up to six hours a day, five days a week, and then move up another notch to get to five eight hour days. This is simply one possible path, and I have no clear idea how the post office would structure his getting back into the job. As with the ear reconstruction, there are variables that I don't know, things that are out of my and Paul's control.

This is part of why I had Paul sign the release form so the therapist(s) could talk to his employer and begin to help structure his return to work so it's successful for Paul and for them! He sees them (therapists and doctors, and me) putting limits on him and misses that we are holding the reins rather tightly not to thwart his desires but to do all that is possible to ensure success.

I had some other piece that I wanted to speak of here, but it is eluding me right now. Please pray that this three hour visit/time at the post office will be of benefit to Paul and to the men he engages with during the time. Pray for the vestibular assessment tomorrow morning, and especially pray for our meeting with Dr. Roehr in the afternoon! We are at a moment of things changing, perhaps rapidly, and while it is exciting it is also unsettling. It is likely to mean shifting in routine for our family, and that will throw all of us while we adjust to the new frame of our days. And, in truth (this is part of what else I was thinking!), with ongoing appointments related to the ear reconstruction plus possibly continued physical therapy and maybe some regular meetings with the rehab psychologist, there will be a need for flexibility in his schedule, not to mention his needing time off for the ear surgery...which bugs him, thinking that he might have to take more time off just as he is getting back into it. He has groused a bit about the prospect of surgery in late May/early June, and maybe needing surgery for the crossed eye later in the summer, and the follow-up surgeries for his ear...I keep saying that God knows the timing, none of this is catching him by surprise, and (as I said here, but not as clearly to Paul--because I don't think of it when we're talking!) the major surgery(ies) will likely be behind him by July or August, and that puts us right up to the one-year mark...which was pegged as a not-uncommon point for someone to return to work following a TBI.

So, as I close, keep praying. Pray that God will heal and direct in all these things, as I mentioned above. And pray that the crossed eye will uncross on its own, so corrective surgery is not needed. That would delight Paul!

 

Monday, April 2, 2012 7:41 PM, CDT

That was Dr. Walsh's assessment of today during Paul's appointment, because we've reached the 100% mark on both expanders! He's pleased with how the expansion is going, and we are more and more looking ahead to having the surgery, asking for more details each week. Not that he can give us all the answers; there are simply too many variables involved. Nonetheless, this is good news and we will continue through April and see how close to the maximum we're able to get.

Dr. Walsh put in an order for a vestibular assessment for Paul, based on Audiology's recommendation. The purpose for this is to see if there is something amiss there that is causing the balance problems Paul has been experiencing. Paul thinks that there might have been a bit of improvement; he noticed that he didn't have the same instability last night as he's had up till now. The assessment is scheduled for Wednesday morning, and is slated to take an hour and a half. He will have the joy of soloing both to and from that appointment as I and the younger two will be off having academic testing for the year done. Then he and I will have a second trip to HCMC, to meet with Dr. Roehr!

That session with Dr. Roehr is a huge deal. Paul is hopeful that he will get his "return to work" order. I am hopeful, too, and based on some comments from Jen today she and Lindsay think that it's time, especially if we are able to work out a plan whereby Paul can try without putting his job (and consequently our family's financial well-being) at risk. He, as I've said before, is sure that he can do the job...but when he's really pressed on the matter of "how are you different now?" he admits that there are changes, and those changes do impact his ability to do things that he would need to be able to do. Today, as a piece in helping find the way through this phase, I obtained a release form so the therapist(s) may talk with Paul's employer and begin to see what we can structure to best serve Paul's needs and the post office's needs. Paul signed it, as I answered that I think it would be helpful. I think it wise to have Jen, or Lindsay, talk directly with the post office about these things; they are more knowledgeable, medically, than I, and they are less emotionally engaged than I or Paul. My prayer is that they, along with Dr. Roehr, would be able to help set up a good plan to help Paul return to work gradually, with needed support, and do well what he can as he keeps aiming for the high mark (getting back to his pre-accident position).

 

Wednesday, March 28, 2012 9:06 PM, CDT

Tonight it feels as though things are swirling around...dates, and appointments, and developments...so let's see if I can corral some of them and present them in a clear manner.

Paul was cheered to report that during his therapy session with Lindsay today he had done better on a test she gave him, one that was similar to tests she's given in the past. That heartened me, too, and is especially cheering in light of the fact that tomorrow Paul is scheduled for a three- to four-hour neurological assessment. This is something that Dr. Roehr requested prior to seeing her again (next week, on Wednesday or Thursday--I haven't my calendar right at hand to confirm). This assessment will be key in deciding what course to take now with Paul's recovery and possible return to work.

During the past week or so I had been noticing that Paul had seemed to make a little jump in his ability to process information, to figure things out. To me that supports something that a doctor said during one of the first care conferences when he was in the Knapp Rehab unit: no amount of practice is going to do much if the physiological healing hasn't occurred. Paul goes along for a while at a certain level, he's working on things, doesn't see a lot of progress, and then suddenly it clicks and he takes that little jump.

Please pray that Paul will remain relaxed during this assessment. Pray especially that he not get stuck if he misses something--he has a tendency to beat himself up, figuratively, when he makes a mistake, and that hinders his ability to keep going. I think he sees the gap between what he used to know easily and what he has a hard time remembering now, and is discouraged, especially when he wants to do well so he can regain some of the things he's missing--independence and going to work are two big ones.

Due to logistics, Paul will have his first solo trip on the light rail following the neuro assessment tomorrow. I believe he is ready to handle it; after many trips with him to and from HCMC, and several instances where I or a therapist have "shadowed" him, I'm comfortable that he will do just fine. My biggest concern about giving him this experience is that he will conclude that he is ready to steam ahead and have all the independence he had prior to the accident, that he may go where he wil when he will with no restraints, and it will be difficult to rein him in. He was surprised that I was considering it, surprised that Lindsay seemed supportive of it, so I had opportunity to say that it's more a matter of balancing his opinion that he can handle it with our observation of potential problems for him. It's not that we want to limit him unnecessarily, we are loosening the reins bit by bit as we are confident that it's manageable. And that is the rub: he needs to try, as that's the only way to really assess if he can handle things...we simply need to give him opportunity to try within a safe arena, to limit the variables so it's not overwhelming for him or too nerveracking for me. Pray, please, that he will be gracious about this and refrain from rushing to reclaim his freedom, saying, "Well, you let me do it once, and I did just fine, so what's the problem?" Sometimes he simply cannot see matters objectively and understand why the doctors and therapists maintain certain limits to his activities.

As I understand it, Paul and I will meet with Dr. Thomson (I presume, as he's the one who will be doing the assessment) to go over the results. That will have to be scheduled, according to Lindsay, who checked into a few details for me today. I had wondered if I needed to be there, and she said that maybe they'd want to talk to me also, but when she asked the answer was no, but I'd come in with him for the results. I expect that will be before Paul's appointment with Dr. Roehr, but I'm not sure. If so I trust that we will be able to fit it in next week--it's our spring break week, and that give me a litttle more flexibility even with dentist appointments for the children and our annual academic testing for Emily and Samuel already on our schedule. It's not going to be a very relaxing week, I fear!

As of this past Monday we are at almost 100% on both expanders. Dr. Walsh wishes to continue, to get as much past 100% as possible, up to the maximum 150%. He believes that since the discolored patch hasn't changed over a couple weeks it's not a problem. He will keep close watch on it, but he's more comfortable with injecting as much as possible each time. By my calculations we'll reach the maximum by the end of April, so very likely sometime during April we will get this surgery scheduled.

During Paul's appointment on Monday we asked several questions about the surgery, particularly about taking cartilage from the ribs. Dr. Walsh plans to take one "floating" rib and at least one other rib, as he needs two types of cartilage for shaping the ear structure. The floating rib cartilage is more flexible while the fused cartilage is firmer. As with many details about this, exactly what he will do won't be fully decided until he begins the surgery.

Paul is perturbed by the notion that he's going to lose at least two ribs. His concern, I think, is that he won't have adequate protection with missing ribs. He's fixed on the "how many will be gone" and loses sight of the "how many I will still have". I suspect he also envisions that Dr. Walsh will remove adjoining ribs, which COULD compromise the protective function of the ribcage; I expect that that would NOT be the case, that it'd be non-adjacent ribs.

This will be a major surgery, and Dr. Walsh has intimated that it'll take a full day. That tells me that I will definitely need help with my children whenever this takes place, though as yet I have no idea what manner of help will best suit. It may mean all day, it may call for all day and overnight--I just don't know. I will share the particulars as soon as I know more, and in the meantime I ask that you pray for every detail of this matter to fall into perfect place.

 

Wednesday, March 21, 2012 9:24 PM, CDT

Paul reported that he and Lindsay (and, based on his wording, Jen as well) talked more today about the idea of job training. I am not completely sure what it is called--job training, vocational training, vocational rehab--but it would be training that is not job-specific, done somewhere other than at the post office. Therefore, to Paul, it is not the best way to go. He's convinced that the best way for him to regain functional ability, to regain the skills to do his job, is to be back on the job! Anything less than that appears to him as a waste of time.

As he spoke of this to me this evening Paul expressed his idea to call his supervisor's supervisor's supervisor (no, I didn't make a mistake there, this is the level of supervisor that he was referring to) and talk about returning to work at the post office. As before, when this topic came up, I was not in favor of it. Quite honestly, it scares me to hear him talking about calling a supervisor, someone higher-up on the ladder, and pressing to be back at work. It's highly likely that no matter who he talks to at the post office the first question that he will be asked will be along the lines of, "Do you have the doctor's clearance to return to work?" I'm not absolutely sure of that, so I do struggle with what, if anything, I should do. Part of me wants to call his most immediate supervisor and alert him to this, let him be aware and somewhat prepared to respond to Paul, to inform others who might need to know so they're prepared as well...and I struggle because that feels like I'd be going behind Paul's back. Then I think of the possible ramifications to our family, particularly financially, if Paul were to win his way and fail, and end up losing his job completely. That would put us in a very tough spot.

During the talk Paul and I had on this matter I inquired of him why he is focused on skipping the job training that Jen and Lindsay are both recommending. They, and the doctor, have had much experience with people who've had TBIs, so they know what is helpful. Paul is generally skeptical about counsel from others, even persons with training and/or experience, when it doesn't line up with what he believes is the thing to do. That bent in him makes it hard for him to yield to doctor's orders. He does give way, but it is not easy--for him, or for me as I watch him struggle!

In our conversation, also, Paul indicated that Jen or Lindsay had given a timeframe of three or four months for this job training they're recommending. He's rather appalled by that idea...and then he tangled it up with the coming surgeries. I think he's caught on the notion that he wouldn't be able to work till all the surgeries are done, but it's not quite clear to me how he's putting those pieces together. My sense, based on my understanding of things Dr. Walsh has said (and not said) is that going back to work now, before the major ear reconstruction surgery, isn't feasible. But I suspect that once that major surgery is over and Paul has recovered from it there would be less concern about his being at work, doing the various job functions. Yes, it's possible he would have some limits, and yes, he would have to have some time off for the follow-up surgeries when they come along, but those could be accommodated. So, to me, the timing of job training and the ear reconstruction surgery actually mesh together reasonably well. Right now we are tentatively looking at late May or early June for the surgery, which is about two and a half months away. Three months or so of job training would go out to about mid-June, maybe July if Paul needed a couple weeks (or more) off for the surgery. And that actually comes close to the one year mark, which had been mentioned early on in this marathon as a not-uncommon timeframe for recovery from a TBI.

All in all, this is a repeat of a theme that has sounded throughout this, from the time Paul "woke up" and was cognizant of the fact he'd been in an accident. Perhaps it's more accurate to say that it's a variation on the theme. In either case it is a burden to me, sparking fear that Paul will move unadvisedly and create problems for himself and for our family. Earlier this evening I wrote (in my journal) that I pray for wisdom for myself, and for Paul to be inclined to receive the counsel from therapists and doctor, to be inclined to yield to it. This is not easy for Paul. Not being "allowed" to work, as he sees it, is very hard for him as a man desiring to provide well for his family. Please pray that he would see the bigger picture, how he is providing now for us, and how following the advice of trained and experienced individuals will further his ability to provide well for us in the future. Pray he'd have the grace to let go his ideas of what to do and be guided by others who are more objective.

A few other developments: Yesterday Paul had an eye exam. Dr. Silbert wished to do such an exam to ensure that there were no other issues at work with his vision besides the strabismus. That came out clear, and Paul mentioned today that Dr. Silbert thinks that perhaps there IS some correcting of the strabismus occurring in light of Paul's noticing some double vision. He's describd it as seeing one image "here" with his right eye, and a second image "over there" with his left eye. Dr. Silbert is still holding off on scheduling eye surgery to help correct the strabismus for three months, maybe longer. Do pray that God would be pleased to heal this without surgery!

Also yesterday Paul had a session with a rehab pyschologist. He has not said much about that, but did give to me the note that Amanda wants to have two more sessions (at least) with him, so I could get those scheduled. I've done so and we'll see how those help.

Today Paul had a hearing test done. On Monday he talked with Dr. Walsh about his concerns about his balance (which can be affected by inner ear issues). Dr. Walsh and the resident working under him did some looking; there is some fluid build-up in the middle ear, and Dr. Walsh remarked that the eardrum looks a little abnormal. He wanted Paul to come in for a hearing test; if that was fine he'd probably want Paul to have some other testing done to discern what is happening to cause the balance problems Paul is noticing. His hearing checked out just fine, so I expect on Monday we'll talk further about this other testing Dr. Walsh has in mind.

And after two weeks of watching it, with no discernible change, Dr. Walsh has concluded that the purplish patch we are seeing is not a problem. He will keep a close eye on it during the fluid injections, but he will aim to inject around 10 cc's each time. Please pray that this goes well, and that we are able to get close to the maximum expansion.

One last note, a "more from me" comment: Over the last week or two I have been feeling very much forgotten or uncared for. It seemed that no one was inclined to reach out a hand to help where we had needs. God and I had ongoing dialogue about that, and as I laid open my heart to him I found that he held me, and helped me rest, and see that he was handling our needs. I have been encouraged with the blessings of meals in the last few days, a reminder that God and people do care, and that is sweet.

 

Friday, March 16, 2012 9:47 PM, CDT

For the first time in a while, it appears that we are on the verge of entering a new phase of this marathon. Paul starting a stint of physical therapy was one shift, and the piece of talking with a rehab pyschologist is still coming. Wednesday really seemed to bring some breezes of potential change, though.

While Paul was in his OT session with Jen I stopped in to get his OT and speech therapy appointments blocked out for April. My philosophy has been that it's easier to schedule and cancel if necessary, if the number of appointments changed or something, than to try to squeeze more in. However, Meagan, who handles scheduling when it's more than one type of therapy, told me that Jen had told her that she wanted to wait on scheduling more appointments till after the neuropsych testing coming up in a couple weeks (prior to Paul's next appointment with Dr. Roehr), and to have me come to talk to her about it. So I walked down the hall and poked my head into the room where Jen and Paul were sitting. Jen told me about wanting to wait till after the neuropysch evaluation because she and Lindsay are starting to sense that Paul is ready and would be better served by different therapy--namely, a move toward more functional therapy, perhaps vocational rehab. She didn't know exactly what would be best, and the results of the evaluation and Dr. Roehr's observations would play a large role in what is recommended.

Once she'd gone over this Jen agreed that if I wished to schedule the appointments that would be fine, as long as I was understanding of the reality that we might end up cancelling them if the consensus is that Paul is ready to move to what I am referring to as functional therapy instead of clinical therapy.

Jen and I talked a little more after Paul's session with her. She remarked that since the beginning Paul has had a single focus: getting back to work. That is good, and we want to focus with him on that. At the same time, she and Lindsay both have seen that Paul seems to be so firmly fixed on that goal he's unable or unwilling to entertain a plan B (or C, even). For each "what if" she would present Paul would respond with the most positive spin on the situation, and would have a hard time accepting the negative "what-if's". I'm not sure that makes sense, and my recall of an example Jen gave me is foggy. What sticks in my head is her mention of the reality that while Paul's employer will do everything possible to help him come back they must make decisions based on economic and practical considerations. So while they will do much, Paul has to develop strategies to handle tasks and duties and such, so he's able to perform the duties of his job.

I'm not sure, that may be as muddled as what I already said. In any case, as we talked I observed that Paul needs to see for himself--experience for himself--what he's been told. Jen has had that impression too, and that is part of why she feels that he is at the point where functional rehab will be most beneficial--he would have training and help in handling job functions, and it would be in a safe environment so when he runs into difficulties it wouldn't have such devastating consequences.

It didn't hit me right away, but as I kept thinking about it I was faced with fear about our future. What will happen to us, financially, if Paul is not able to return eventually to his electronics technician job at the post office? How will we manage if he ends up with a job that pays less? It is scary for me to even think about such questions, and it's equally scary to consider talking about it with Paul. One of his oft-repeated statements has been his desire to provide financially for his family. If his ability to do so is diminished it will be a mighty blow to him.

Then today at the end of his PT appointment he and I and Kara (I found out that it's not Kate but Kara) were talking and another little wave of change blew across the scene. Kara has assigned coming up with three- or four-step activities to keep stretching Paul and helping him see strategies to use to manage multiple tasks. She also instructed that he begin to take more responsibility to coordinate our getting to HCMC for his therapy sessions--let him figure out what time to leave so he's on time for his appointments. He laughed and said that his strategy to this point has been to leave it to me! I laughed and said that we are one, but I also recognize that "giving it back" to him will further his independence and lighten the load on me (Kara worded it thus, but I certainly see it and am waiting for the day when it becomes a shared task again).

So a new stage appears to be on the horizon as we look toward April and Easter. That's a rather interesting realization; at the time we fix our attention on the resurrection and renewal of Easter we may be looking at some new actions in this journey, as Paul continues to recover from his TBI. PLEASE keep praying for us! The concern about his job and our financial future was a jolt, and it's still a fearful thing for me. I know that God is sovereign and this WILL all work out, he will see that our needs are met...it's the wondering how that rattles me, and calls me to keep my trust in him.

 

Monday, March 12, 2012 9:03 PM, CDT

A few updates to things mentioned in the last update:

The purplish patch that Dr. Walsh noticed last week was still present today. It hadn't changed noticeably in size or color. It's still a puzzle as to what caused it, why it's there, and what to do about it. Dr. Walsh observed that the skin in that area seems to be soft and pliable, not hard or stressed. He requested that we do an experiment today: have Paul lie on his stomach (Paul asked if he could turn his face to the side so he could breathe, and Dr. Walsh said certainly!) for half an hour and see if that purplish spot moved. I believe he thought that maybe it's some sort of bubble that moves around depending on Paul's position, whether he's upright or prone. We did so, and as far as I could determine, it didn't move. So we're still baffled by this, and will keep watching to see what it does as the days pass.

On a more positive note, Dr. Walsh injected 8 cc's into the lower expander today--a little less than usual, but more than the 5 cc's he'd done last week. My guess is that he will inject as much as he can safely each time; he watches the blanching of the skin very closely, and with this purplish patch he's even more watchful. Please continue to pray that the injections of fluid would go well, that there would be no problems and we'd reach at least 100%. I'm not sure how much beyond that Dr. Walsh will try to go, especially if this purplish blotch persists. Pray that that will clear, and for wisdom about the matter.

It is an easing of my mind to notice that while Paul is not happy about the continued restrictions he is under (no riding the light trail alone, no driving, no going to work yet) he does seem to be slightly more accepting of the reality of this at this moment in time. Please pray that he would continue to trust God's timing in all this, would continue to work with the therapists and the things they are focusing on with him, would give good effort to the assignments they give, and cut himself some slack. He asks regularly that I and the children pray that his mind would heal and begin working better, so I relay that to you as well: Pray for the physical healing of his brain, and for the functional healing as well. And pray that he would be PATIENT through this process, which is so long and so much slower than he wishes.

Likewise, though he is not thrilled about it, Paul seems to have accepted that the ear reconstruction will require multiple surgeries, and even seems to be holding the thought that he shouldn't go back to work before that's done. I could be mistaken in that conclusion, and maybe he won't need to wait till it's completely done, but that is the sense I am getting as I hear him speak of this. Small pieces like that are an encouragement to me (and now as soon as I've said it something will happen and Paul won't have that sort of mindset!). 

 

Monday, March 5, 2012 1:53 PM, CST

Concern of the day, disappointment

Today was Paul's weekly fluid injection. Dr. Walsh observed a purplish patch at the top of the lower expander--a puzzling thing. I had noticed it in passing a day or two ago. We've no idea what might have caused it, so Dr. Walsh offered two possibilities for today: skip the injection into the lower expander (he'd still do the upper) for this week, or insert less in the lower. My vote would've gone for "insert less today", and just as I was ready to voice that, Dr. Walsh decided that that was what he would do. He cautioned that if we (I, in particular, as I can see it) notice that it becomes a lot darker to call him. Otherwise we'll simply watch it this week and see how it looks next Monday.

Please be praying that whatever caused this purplish color would clear itself over this week. Dr. Walsh said today that we probably will not go to the limit of the expander (i.e., the 187.5 cc that is the upper limit). We've about 30 cc's to go to reach 100% on the lower expander and about 18 cc's on the upper. If we're able to resume the usual 10 cc's/week to the lower expander we're still looking at end of March to reach 100% there, and that is the first goal. Should problems arise such as the plastic of the expander becoming exposed we'd have to move forward with surgery, and then there might not be sufficient skin to cover all the folds of the ear, which would necessitate modification of the planned reconstruction. The closer to 100% we can get the better.

And yes, we'd reach the 100% mark on the upper expander about the end of March also, if you were wondering!

Dr. Walsh also answered one question that both Paul and I were asking, and reviewed the probable outline of surgeries. Yes, I said surgeries; I did vaguely recollect he'd said that before, but it had not stuck with me. He anticipates four surgeries to fully do the reconstruction--oh, boy. The first will be to take rib cartilage and actually carve out the new ear. That was our question: does rib cartilage grow back or not? The answer was, "It doesn't, so once it's taken it's gone for good." The other surgeries will involve positioning the ear lobe and other necessary steps, and I'll be able to explain what will be done each time as each surgery comes up. There are many variables involved, most of which aren't known until the surgery is underway, so Dr. Walsh can only give broad strokes to his plan at this point.

The disappointment came after the physical therapy appointment Paul had this morning. As I mentioned before, Dr. Roehr wanted him to see a physical therapist for an assessment before giving the clearance to take the light rail alone. Paul had hoped, and I had too, that one appointment would suffice and he'd have the approval. I asked him to find out if the therapist could give the approval or if it'd have to go through Dr. Roehr; he was willing and asked that I pray he'd remember to ask the question! He did remember, as I found out when he came to join me and the children after his session; he told me that I needed to talk to Meagan (who schedules multi-discipline therapy appointments), and that the physical therapist was there so if I hurried I could talk to her too. By the time I arrived at Meagan's office Kate, the PT, had left, but after getting several appointments set for Paul...since Kate wanted to see him twice a week for three weeks...we walked down to the PT gym and were able to talk to her for a few minutes.

The bottom line, according to her, is that she's not concerned about Paul's physical ability--his strength is fine, his endurance is fine, there is a VERY subtle balance issue--but his functional ability. That is what Lindsay and Jen are working on, and what she will be focused on: getting Paul confident to retain multiple steps and manage them successfully. She gave as an example she'd ask him to take the train to this stop, get a paper, and come home. In other words, give him a two or three step sequence of things to do and see how he handles it. I believe I have just added lay physical therapist to my job description!

So that is where we stand today. Paul has not bemoaned the outcome, though both of these are disappointments--no solo riding the train, and a slightly slower schedule with the skin expansion and consequently the surgery. Pray he will rest in the assurance that we ARE working toward a goal with him, that he will hold on and do his part, and that I will look for opportunities to test him as Kate suggested. He'll have another PT session on Wednesday, then we were only able to definitely get one appointment each of the next two weeks, so Meagan put Paul on a waiting list (in case there's a cancellation) and scheduled him twice during the last week of March.

For the moment this outcome has put the matter of going back to work a step back. Please keep praying that Paul will submit to this, trust that God is doing it and all will work out in God's perfect time. Pray that he will use this time wisely, to both prepare to return to work and to invest much into the precious family relationships that cry for his attention.

 

Saturday, March 3, 2012 9:07 PM, CST

It is somewhat frustrating to come to write an update and find that my thoughts are scattered...so forgive me if things seem disjointed, especially at the outset.

Last time I wrote I spoke of how Paul believes that getting back to work would be the best way for him to regain function and such. He has continued to fix on that idea, and continues to suggest that therapy is not helpful. On Wednesday I had opportunity to talk for several minutes with Lindsay, the speech therapist; she remarked that she sees Paul operating sometimes from a "do it once, check it off, it's done, what's next" mindset. In other words, he thinks that it's enough to succeed at a task once, that that means he's regained function. But if a couple weeks go by and then Lindsay asks him to do the same sort of task he cannot remember how or what he's to do. He doesn't see that retention is part of what he needs, what Jen and Lindsay are working with him on.

Lindsay does hope that as Paul meets with the rehab psychologist (which is still a couple weeks away) he will begin to understand that aspect of things. That is my hope and prayer as well, yet I admit that I am not confident that Paul will really talk with or receive perspective from the psychologist. That could be partly because the psychologist is likely to "side" with Jen and Lindsay (and me) about his unreadiness to return to work. It is partly my awareness that Paul doesn't have a high opinion of psychology or psychiatry, so I fear he will go in with that same mindset of "I'll go once, listen, check it off", and it'll be difficult for him if (as I expect) the rehab psychologist says he needs to have further sessions. Your prayers that he will listen and truly HEAR, will let go his cherished ideas and grasp reality, are much needed and appreciated.

Over the last couple days Paul has been agitating about getting back to work, so that the post office isn't paying him for doing nothing. Sometimes he tries to pin me down, as he did with the question, "So you don't think I could even clean the building?” It's like he has tunnel vision; the only activity of any value he could engage in is being in the workplace. Nothing in the home--no tasks that need doing, no relationships with the members of the family--have much value. I know that he doesn't really think that, but his focus on "get back to work" implies it. Earlier this evening he was again questioning me, this time wanting to know what I see as improper behavior that is a result of his TBI. I honestly don't know how to answer that; I am not a medical person, and I don't answer well when I'm on the spot. And I fear that he will use anything I say to argue that he is NOT doing whatever I say, to explain it away, to convince me that I am not seeing it rightly. Or, putting it another way, I fear that he will take my comments to Jen or Lindsay and argue that I'm seeing this, and it's truer than their assessment, and use it to press for his wishes.

Tonight I find that there is a lot of worry weighing on me. Paul has spoken of how a couple men at Cub Scouts have mentioned that they don't listen to the doctor's orders, and he's hinting that he will likewise ignore doctor's orders. In particular, he is considering calling the post office as soon as he is cleared to ride the light rail alone and saying he's ready to work. HE'S NOT!!! He doesn't see that, and he doesn't like hearing, "Wait." I keep touching on the likelihood that his trying to go back to work before he's ready to would cause more problems for us, for our family, than it would solve. I was blunter the other day than I've been in the past and said that he could end up losing his job in this scenario, and we'd lose income and health coverage and be in a very bad spot! Today he was quizzing me on what I had said and when to his supervisor...frustratingly, I cannot clearly recall when I last spoke to Tim. I think it was after Paul's appointment with Dr. Roehr in January--no, it might have been sooner, I was making sure that I didn't need to do anything to keep his paycheck coming. I have some impression that I spoke of the "return to work" order that Dr. Roehr suggested she might write after she sees Paul again in April (and if she delays on that Paul will be devastated). Pray that Paul will be patient with this, and will put his energies into working with the therapists, studying his books and manuals, investing time into personal relationships (with me, the children, and others as God allows) instead of fretting about his not being allowed to go to work.

That reminded me of something Lindsay said on Wednesday: Paul is sometimes his own worst enemy in the therapy sessions. If he flubs or fails, if he misses one piece, he loses his confidence and becomes unable to proceed. That's not the most exact recounting of what she said, but it's the gist of it. In other words, he beats himself up so hard for making a mistake that he can't go on.

I am worried about Monday, about Paul picking up the phone and calling his supervisor and trying to get him to say, "Sure, Paul, come back to work." I think Tim would ask if the doctor has okayed it, and would tell him to wait, tell him they'll work it out when the doctor gives the okay, they want him back, and so on (all the things he's told me over these months). It just worries me, and I am lifting pray that I will trust God with this, as it is rather beyond me. I would like to call Tim myself before Paul has a chance...there you have my "I want to control this" admission! I am really struggling with what to do, what I ought to do, what is the right thing to do in this.

The worry is intensified by the fact that on Monday Paul is to see a physical therapist, per Dr. Roehr's orders, for an assessment that might result in his being cleared to travel the light rail alone. I don't know if the "all clear" would come from that person right away, or if it'd have to be relayed to Dr. Roehr for approval before Paul is able to do so. In light of Paul's comment about getting back to work once he can take the light rail alone--well, you see my concern. Please pray that God will work this out, and that HE would be the one who keeps the reins in place. Pray that Paul will see it's God's hand in all this, even when it's not what Paul wants.

 

Thursday, February 23, 2012 9:14 PM, CST

Tonight I hope to share more of the "inner story", what I see and hear Paul grappling with, and what I wrestle with as I go along beside him on this journey. Over the last couple weeks I've seen developments--I'd call them good, but that doesn't strike me as quite the right word to use. Hope-giving comes closer, though that's not quite right either.

The dilemma of the right word aside, there's been encouragement through these days. Paul and I have successfully connected, talking WITH one another and hearing each other's heart. We're both learning how to communicate better, and while we've plenty more practice needed I am heartened by the improvement I have seen, and by the lessening of the tension and strife in the atmosphere of our home. Tempers still flare, but in general the eruptions are much shorter lived, and much more quickly resolved. That is a huge "thank you, God!"

Since Paul picked up the manuals from the post office and began reading them (or trying to read them) he has begun to realize that his ability to learn and remember things has indeed been adversely impacted by the TBI. He doesn't put it in those terms, but he's said things that indicate he sort of gets it.

At the same time, his opinion is that getting back into the workplace would do the most to speed his recovery and help him regain what he is currently missing. He gripes that the therapy sessions with Jen and Lindsay aren't doing anything to get him back to work; they are not teaching him things he needs to be able to do on the job. He can't see that their job is to equip him with strategies and tools, ways to manage LIFE, so that he's able to bear up under the demands of the workplace. Jen (OT) told me that Paul isn't able to keep more than a couple tasks in mind; she will give him a series of instructions and he cannot carry them all in mind. Today he told me that he'd "failed" in therapy when Jen had him doing something along that line.

As he and I have dialogued more about these things I have been pleased to hear him praying short and spontaneously before me for healing, for his mind to work properly, for him to be able to do things. I was greatly cheered today to hear him picture this as his brain "transferring a file" from one area of the brain to another. Again, that wasn't his wording, but for the first time he verbalized an idea that I have touched on several times in the past. I believe that is what is happening, and it takes time! If you think of a child learning to speak--he or she will say the word over and over and over. Each time the neural connection is graven a little deeper till it's well-set and automatic. That's what therapy is doing, and the studying of manuals, and all. I think it may happen faster with Paul than it does for a child, yet it is still a slow process, and that doesn't set well with Paul. He seems to think one time over something is enough, and doesn't see the small steps that will facilitate the bigger steps he is looking for.

The issue of autonomy is perhaps the biggest one we face. As yet Paul is restricted; he does have clearance to WALK alone to the nearby stores, and we just cleared his being home by himself for an hour or two (longer than that is still not approved, which grates on him and makes it harder for me to get out, though he is reasonably amenable to it), but he hasn't been cleared to take the light rail by himself, nor to resume driving. One day a few weeks ago I sort of let him have it on this topic; he was squawking about what he would do when he could go to work--would he have to WALK the whole way, since he couldn't take the train alone? I answered in part that if for a time I have to drive him to work and pick him up I will; we will do whatever is necessary to make it work! Then I spoke to how his resistance to letting me do these things made me feel--how I love being able to serve him, and want to bless him by doing things for him, and how it hurt to hear him shut me out, block me from ministering to him. Sure, it would mean coordinating things, it would take time from other activities, but if that's what's needed we'll make it work.

In my opinion, over the last two weeks Paul has become more open to hearing how his words and actions come across to others, and he's responding with a greater willingness to change, to connect, to have good relationships with me and our children, and other people. I dare to say this is one of the "working all things for good" that God is doing in Paul through this trial. The accident in itself was not a good thing, but God's promise is that he will work all things together for good for those who love him. The other night Paul and I were talking, and mentioned how God allowed Satan to afflict and test Job. God could have prevented the accident, but he didn't (he did preserve Paul's life, for which I am incredibly grateful!); what he will "give back" when this is over we don't know. Job received back double what he had had before--we can't presume it'll be like that for Paul, for us. What we can bank on is that God is in control and God is good.

I've said before that Paul chafes at the restrictions and especially that he cannot go to work. I can understand it somewhat--God created us to be productive people, and such a large part of a man's life is spent working to provide for himself and his family. But I can't fully grasp how difficult it is for Paul to not be gainfully employed. My answer to that dilemma has been to say, "During this time you're not able to go to work you could tackle some of the home projects that need to be done." Those things would give him something to DO, would help to fill his days. I've also thought and tried to say this time he's not working is first a time for him to focus on his recovery, and is an opportunity to pour time into building or rebuilding relationships, investing time in relationship with me and with each of our children.

Earlier this week--Monday, actually, as we came home from his appointments--Paul expressed frustration about his not being allowed to work. For the first time I said that I wished my dad were alive, that he might have good advice for Paul on how to handle being disabled, unable to work. Due to a serious heart condition, daddy was forced to retire in his mid- to late-forties. I thought no more of it, to my knowledge, than that he was around; only now do I have any sense of how difficult that must have been for him. How he dealt with it I don't know, and he's not here to share his experience. Daddy would be up in his nineties now, if he were living, so this scenario is unlikely, but oh, if he were, what a help it might be!

As I close tonight, I ask that God would direct your prayers. Pray especially that Paul's brain would continue to heal physically, and for his functional recovery to continue as well. Pray that he would have patience and trust the doctors and therapists, working with them and believing that they are doing what will help him reach his goals.

 

Monday, February 20, 2012 9:43 PM, CST

Earlier today I had somewhat clearly in mind things I wanted to share in an update; frustratingly, they've all skittered away now that I am actually WRITING an update. If I catch them I'll include them, if not I'll catch them another time.

For the most part, things haven't changed a lot since my last update. Paul had his weekly fluid injection this morning. Dr. Walsh remarked again how nicely that point had smoothed itself out, and how well things are looking with the expanders. He is adding about the same amount of fluid each week (2 cc in the upper/smaller expander, 10 cc in the lower/larger expander). It does fluctuate a bit, depending on how the skin looks as he injects the fluid. He explained to me last week that he watches and when the skin becomes mostly white he knows it's about at its max for that day, as the whiteness means there's not much blood flowing into that area. This is why Paul must wait for 15-30 minutes after each injection; Dr. Walsh needs to check him again and make sure that the blood flow is back before he tells us, "See you next week!" God be praised, this "pinking up" happens well and Dr. Walsh is pleased when he comes in and sees that it's occurred.

I am also intrigued to see that Dr. Walsh picks up on other signs that the amount of fluid that's been injected is about all that can be each time--he reads Paul's reaction and the evidence of pain. That these come at about the same point in the process is a gift; Dr. Walsh would stop sooner if Paul were extremely uncomfortable. We all laughed a little today that Paul would like surgery tomorrow, which is NOT going to happen! We're still looking at late May or early June, by my best calculations. Much depends on how the weekly fluid injections go. As I said once before, when we reach the 100% mark anything more is icing on the cake, and Dr. Walsh will take as much beyond that a possible, up to the maximum of 150%. My projection puts that at late April/early May, and then there'll be four weeks of stabilizing before the surgery would take place. My guess is we'll schedule the surgery once we reach the maximum, but we'll see. For now, we'll stick to scheduling the weekly appointments!

Paul observed this evening that the skin over the expanders feels hot to the touch. My opinion is that this is a consequence of the skin being so stretched right now, right after the injection, and that within a day or two it'll be less painful and warm. If not, if it continues to be unusualy warm, we'll give Dr. Walsh a call to see if it's something to be concerned about. Me being me, I might bring it up next week out of curiosity...along with the question, "Will the rib cartilage you remove to craft the new ear mend itself or will Paul permanently be missing a chunk of rib cartilage?"

Paul is feeling much pain right this moment; he took two extra strength tylenol a little less than an hour ago, and has just reported that he cannot sleep in any position. Pray for relief and good rest, please!

Today God granted me opportunity to speak with Jen, Paul's OT therapist. Over the past week Paul and I had talked about the fact that he is able to walk to the stores nearby alone, yet he was still not staying home alone or with the children. Both of us found that odd, that if he could go out alone to a store he ought be able to be home alone. Jen agreed that he's one we've seen is able to handle that; we've watched him and know he is fine. Additionally, our children (the younger two, who'd usually be the ones left with Paul) are not really little ones. Jen and I agreed that it seems appropriate that Paul is granted the freedom to be home alone or with the children for one to two hours. That will ease a good bit of the stress we've had, as it won't be necessary to have someone here as backup to him when I am out. When it's more than two hours (namely my book club night, and perhaps other occasions to allow me respite) someone to hang out with Paul and the children will be needed.

Shifting topics now...Over the past week I have been thinking much and talking with one and another person about sharing here what is very helpful to me and why. I've been hesitant to do so, fearing that I would appear to be demanding, or mooching, or some such inappropriate behavior. Hesitantly still, I dare to explain that having the evening meal for our family provided four or five nights a week is an IMMENSE help and blessing to me. The burden of juggling appointments, activities for three children (and a few for me and for Paul as well), homeschool and Hope Academy, managing the house and household necessities...it's all on me, and I'm out of energy when it comes time to feed my family supper. Coming up with something to feed us is beyond my ability most nights.

From the position of wife and mom, there is a measure of shame in admitting this. I feel that I am failing in my role when I cannot care for this basic need of my family myself. My head knows I am not failing, so it's feelings that need to get in line with reality. It's been rough to have the need for these evening meals on the care calendar and see them left open, unmet. I've struggled with feeling hurt and ignored, fighting to give up asking, hesitating to plead for help (except from God), and desperate for someone -- or more than one someone -- to see and hear my aching and reach out to me. And then I struggle with feeling selfish, as if I'm the only one who's handling big matters. It's rather a vicious circle.

Pray for this, for me as I work through it. The gift of meals is one piece; there is more, more than I can manage to speak of this evening. Pray for us, for Paul and for his continued recovery. There are things there that I want to speak to as well, to give information to guide your prayers for us. For tonight, though, I have reached the end of my coherence, so I shall have to come at this another time.

 

Tuesday, February 14, 2012 5:40 PM, CST 

A brief update on a vision issue for Paul:  I mentioned the other day that both the children and I have noticed a very slight shift in the position of Paul's left eye, that just a tiny bit of white is showing at the inside corner--suggesting that the strabismus is beginning to correct itself.

In the last two or three days Paul has mentioned that he is experiencing more double vision now.  I suspect that this could be related to the possible correction we are noticing; I reason that he is seeing with both eyes, but because of the strabismus he's not having the separate pictures put together into one--hence the double vision.

Paul is scheduled to see Dr. Silbert in a couple weeks, so we will find out what he has to say, if he agrees that Paul's eye might be starting to correct.  Paul would like that very much, as he considers that this vision issue is the main reason he cannot drive right now.  I think there's more involved than his vision only, so we may have that to work out.

Please pray that this correction, if it is beginning, would continue.  It would be wonderful to go into that appointment in a couple weeks and hear there HAS been change for the better!

Please, also, continue to pray for our working through various relational and communication issues.  We've had some hard moments and need the prayer covering.  I believe that part of these issues boiling up is spiritual in nature, spiritual attack, so we must engage in battle with spiritual weapons, as well as working through the isues that come to light.  And pray for the practical needs we have, that God will continue to meet them as he deems best.

 

Thursday, February 9, 2012 4:20 PM, CST

A few days ago I remarked that I wasn't sure how to characterize my day: a roller coaster or a see-saw. Neither seemed quite right. When I thought of "pendulum day" I knew I had a more accurate description! That is an apt description for the past week; things will be going along relatively smoothly, and then it's as though the pendulum swings and we hit a rocky patch.

Over the course of this past week Paul has made progress in coming to terms with the way things are. He wishes very much that he could go back to work, and he does remark that it seems silly that he is still held by restrictions (cannot be home alone, cannot supervise our children). He's frustrated that the soonest I could schedule an appointment for physical therapy (to assess him and perhaps get that clearance to be home alone, take the train alone, supervise the children so I can go out by myself more easily) was early March. Thankfully, he was accepting of my comment that God was in charge of this and he ordained that we wait that long. Admittedly, it also helped that he's on a waiting list and if there is a cancellation he may get in sooner! But tht idea that God has the timing in hand and he's orchestrating this--once we've done our best to schedule things we must submit to God's sovereignty. Not easy, but that mindset did seem to ease his frustration.

One of the reasons Dr. Roehr wishes to have PT do the assessment now was Paul's mention of some balance concerns he's been having over the last couple months. The observatioin was that Paul's shaky balance could be physical in nature--it's not severe, thank God!--and in that case PT is best suited to aid him. The concern is that if he's unsteady he could stumble more easily, or fall, and if he's home alone or out alone that could be disastrous. Pray that any unsteadiness would resolve itself, either on its own (Paul is trying to do things to strengthen himself) or with some PT exercises. The scheduled appointment is March 5. Pray that Paul will trust God's timing, especially if he does have to wait till then, and that the right decision will be made.

As he and I talked about this over the past week we both shared our perspective, and both heard more clearly the other's motivation. That was thanks in large part to a couple who meets with us regularly to talk and pray as we work our way through relational and communication issues. Paul heard me say that I am seeking to abide by the doctor's orders when I will not leave him home alone, or alone with the children. I feel the tension between that and what I see, that he IS fairly capable. It's hard for me to be caught between the need to abide by doctor's orders and Paul's desire to reclaim his independence. And I heard more clearly that he wants me to have more latitude to go out by myself, leaving him and the children home. He wants to help, wants to make things easier for me, and it seems he is getting a bit better that what he thinks will be helpful--pressing me to go anyway, leaving him home or with the children--is not truly helpful. That shift in his mindset has lightened the strain.

Another thing that helped last week was my FINALLY getting him down to the post office to pick up a couple machine manuals so he could begin studying them on his own, to begin to relearn the machines he would be working on. His supervisor had told me what two would be good ones to start with. Paul had been chafing to go, and was frustrated each day that it didn't work out. I believe we managed to go last Friday and I made it one stop of several, to make good use of an outing. When we talked about it with our friends that evening Paul heard that I wanted to accommodate him, but I was juggling everyone's schedule and needs, and I heard how he perceived it.

As it turned out, that particular day Paul had not been able to find his file cabinet (where he had stored some of these training manuals), so the two that Tim had recommended weren't available. He did find a couple others, and Tim was going to talk to someone who might know where Paul's file drawers had gone. We could only grown when we had the answer: this other employee had put Paul's books in the bottom two drawers of a four-drawer file cabinet...which was in the same SPOT as the two-drawer cabinet Paul had been using (and he'd put his in the top two drawers). His drawers were labeled, but Paul's weren't, so Paul didn't realize his books and manuals were right there!

Once he knew where to look Paul was eager to get back down and get the two manuals he'd been advised to start with. We were able to swing by Tuesday morning and I could only laugh when I saw him come back out with not just the two manuals he'd been after but easily half a dozen more! I remarked that we have one issue with this: Where are we going to store all these manuals at home?

I have been so very grateful for God's graciousness over the past week. It was becoming clear to me that I was out of margin; that was one reason I was seeming to drag my heels on doing things, I was simply drained. I was tired of fighting him on having someone come so I could get out, so I was giving up on respite for myself. And that was making it harder for me to cope. This came up as we talked with Todd and Tamara Friday night, and I could only bless God for his moving in them to speak to their desire to serve us in some practical way...Todd offered, prompted by God, to come the next afternoon and visit with Paul, perhaps watch some sports with him and Samuel, while I had a couple hours to go out ALONE. What a gift that was!

Paul and I have continued to touch on this matter, and it's been sweet for me to see that his understanding of the burden I bear as I manage everything is growing. He desires to help and is realizing that he needs to listen to what I find most helpful, not simply do what he deems would be a help! And I am working on receiving his attempts to help in the spirit in which they're intended, even if it's not exactly what I find most helpful!

It was a further encouragement to have Paul tell me that a friend from church has said that we could give him a call if I need to get out sometime; if he is available he'd gladly come over and hang out with Paul, and with the children. Seeing Paul positive about that, and being reminded of Dave's willingness to help out, was another blessing.

As I think over this I come face-to-face with the reality that arranging for respite for me is a necessary thing. This marathon is still going on, and we still don't see the endpoint. It is hard, even humiliating, to ask for help, yet God has given us a body to be part of, and tells us that when one part of the body is suffering the whole body suffers. We're to help one another. I am not sure how to best handle this; it seems that having a consistent time that I could get out alone would be good, yet I also find that sometimes I am at the end of my rope and desperately want to go out for just a while, but I cannot because no one is here to back Paul up as dad. Please pray that I would see how best to manage this. I admit, I have not the emotional energy to call down a list of people to find someone who can help. Indeed, sometimes I feel I haven't the energy to know what it is I need. I cry to God, and as he's shown this week, he lavishes answers. I am torn between keeping my cries for help to him alone (in George Mueller fashion) and bugging people here or on the care calendar. I pray God will guide me in both, as I believe both are appropriate.

I must wrap this up for now. Before I do, a couple medical points. Praise God, the point in the lower expander balloon has smoothed itself out and continues to do so each week. Paul is now experiencing some pain, particularly the day of injection; the skin doesn't appreciate being stretched! Dr. Walsh said that that is normal, and advised Paul to take tylenol for pain...even to take it prior to the injection on Monday. He also assured us that he could give Paul something stronger for pain relief if necessary.

And it is not absolutely certain, but over the last few days I, and now Emily and Samuel, have noticed that there seems to be a SLIGHT correction to his crossed eye! It appears to me that there is just a little more of the pupil showing, and today I had the impression that the tiniest bit of white is beginning to show at the inside corner of his left eye. Please pray that this continue, if it is so, as it suggests his eye is beginning to correct itself. We're scheduled to see the ophthamalogist later this month, and it would be wonderful to go in with Paul's eye improving!

Also, Paul has expressed willingness to meet with a rehab pyschologist, as it's been suggested that that might aid his recovery and regaining competence, especially in the realm of relational and communication issues. I pray that that will help him and in turn the whole family. That is scheduled for mid-March, a ways out, but there again, that was the first opening and we must trust God's timing on this as well. Pray for us through the waiting, and that it is helpful.

 

Thursday, February 2, 2012 9:41 PM, CST

The meeting with the attorneys this afternoon went well. This was the first that Paul heard most of the information they have, and what they are thinking; I'd had more conversations with them along the way, and I chose to give him a more general overview as we decided to meet with them, mostly to be sure that I didn't get details mixed up.

So, we have officially embarked on a new sub-marathon within the marathon we're already walking. The attorneys, Greg and Pete, will walk us through this, and we will wait and watch and pray to see what God does.

Although it may be frustrating, I have decided that it will be best to say relatively little here about this piece of our process. It's going to be something that unfolds, and I wish to be cautious, to not inadvertently give information that may compromise the case. For the moment, Pete and Greg will get the claim together. That, I understand, will happen relatively quickly (though I am not sure just what that means in the world of legal action). Then there will be several months of information gathering before whatever happens next happens. In short, beyond the mention of five or six months I have no sense of how long this will take. As I said, we will be doing what we must, and letting Greg and Pete do their job, and see what God does as this goes along. I imagine there will be occasions when we need someone to be with the children, and that there will be issues to pray about. As I am able I will share those, and I am deeply glad that it is not strictly necessary to give specific details for people to be able to pray! Your prayers as we navigate this are greatly appreciated. We, and Greg and Pete, need much wisdom and discernment.

 

Tuesday, January 31, 2012 5:01 PM, CST

We've had two days full of appointments and activities here: yesterday Paul had his usual sessions with Dr. Walsh (fluid injection), Jen, and Lindsay (OT and speech therapy respectively), followed by the follow-up visit with Dr. Roehr. It was the first time he'd seen Dr. Roehr since his discharge from Knapp, though she's received updates from Jen and Lindsay over these weeks. Then last night he was at Cub Scouts with Samuel (and Halley, and I with Emily, was also out for the evening). Today Paul and I, along with the younger two, were out for the morning, and then went for Paul's third and hopefully final dental appointment till his next cleaning. It will be pleasant to stay home this evening!

So, now that we are home for more than a fly-in, fly-out moment, it's time for an update from yesterday's neurosurgery follow-up. Here goes:

Before Dr. Roehr came in a neurosurgery resident spent some time with us, talking, asking questions, and doing a few evaluations. That assessment was added to the input from the therapists and used to determine what would happen now and next.

Paul IS still making progress--which is good--though the rate of progress has slowed some. That is a little discouraging as it suggests that the majority of what he will regain has occurred. Still, further regaining of information and function isn't out of the question! I believe, in fact, that when Paul is able to return to work, even if not to the same job he had before to begin with, the performance of tasks there will help him to recover more information. I think a lot of it is there and needs to be re-accessed. Only time will tell how accurate my thought is.

There was both positive and not-so-positive decisions when all was said and done yesterday. On the positive side, Dr. Roehr and the resident (whose name has escaped my recall) agreed that Paul could be ready for a "loosening of the reins", which would give him more freedom to be home while me and the children are out, to be home alone with the children, to take the light rail to and from therapy on his own. Before that is approved, however, Dr. Roehr wishes to have an impartial, objective opinion as to Paul's readiness to handle such activities. She stressed it's to be sure he is safe with these things. So she is ordering one or two PT sessions, to have a physical therapist observe Paul doing these things, before she gives him clearance for them. I had hoped to get those scheduled yesterday as we left, but because there's more than one appointment to be set I must wait to hear from the coordinator to get these all worked out.

Paul was pleased with that, but disappointed that going back to work is still not allowed. Dr. Roehr pointed out that he still needs therapy; he still needs to work on strategies and things to manage everyday life before he adds the stress of the workplace. There aren't enough hours in the day to fit in the needed therapy and going to work, and compromising his therapy would ultimately be a poor move.

At the same time, Dr. Roehr gave him hope that perhaps at his next follow-up with her (in another two months) she would be able to write up a "return to work with these restrictions" for him to take to his employer and see what they could do. Aside, during a conversation with his supervisor today I mentioned this and heard back that yes, they will do all they can to get him back to work WHEN HE IS READY, even if it's not the same job he was doing before. That was reassuring to me, and will be to him as well.

Brief mention was made of one or two other options for work and income. Those will be held in mind and perhaps discussed further at the next follow-up with Dr. Roehr. Because they were only touched on I'm not going to say more about them at this point, since they may not be necessary.

The matter of speaking with a rehab psychologist came up. Dr. Roehr presented it as something helpful, that this person could perhaps give Paul more tools to manage how he is coping with the emotional issues that come with a TBI. She put it in the orders that if Paul wishes to speak to a rehab psychologist all he need do is contact her, or mention it to Jen or Lindsay, and they'd get it set up for him.

I think that about covers yesterday's session. As I close for tonight, I ask again for prayer that we'd be able to meet with the lawyer on Thursday. I feel that that is a matter that needs to be kept in motion; we need to hear together what is said and decide what to do. Please pray that God will provide care for our two young ones for that time period. It is on the care calendar if you need details about the need.  

Saturday, January 28, 2012 4:41 PM, CST

I hadn't planned on doing an update until after all of Paul's appointments on Monday--he'll see Dr. Walsh for fluid injection in the morning, and then will have his regular therapy sessions in the afternoon before we see Dr. Roehr. I figured that that would be when there'd be some news to share, and I'm sure that will still be the case. Over the course of this week, though, there have been conversations and observations that are a weight, and it seems that trying to share some of these things to inform prayers would be wise.

So pray that Paul will see the value of the work that Jen and Lindsay are doing with him. In his opinion the assignments they give do nothing to really advance his ability to do job functions. When he and I talk about this I try to remind him that they have worked with MANY people recovering from TBIs and other things, they know what helps, they know things take time, and they won't hold him back unnecessarily. I also try to encourage him to do things like getting a book or manual about one of the machines so he can review it on his own, which could aid in his regaining functional work knowledge. I keep saying that there are reasons he's not ready or able to go back to work--reasons on his side (his brain's healing, primarily), and on his employer's side. Neither of those are things that we, and particularly he, can control, and I think that is one of the hardest aspects of this journey for him. He wants to be in charge of his life, and it rankles that he is being treated as incapable.

Without going into details, Paul has an assignment he's working on for Monday's therapy. He showed it to me, and I gave as my opinion that he's missing the mark of what the therapist wants, and also that he sounds quite angry. He had shared with me earlier in the week that both therapists have asked him repeatedly about speaking with a psychologist, and he rejects that idea. Pray that this will settle out, however God considers best.

Pray, too, for things to work out for our appointment with the lawyer, which is scheduled for Thursday, IF we have someone to be with our children. And, as I asked in the last update, pray for the appointment with Dr. Roehr on Monday. 

Monday, January 23, 2012 9:02 PM, CST

Good news--the point that we'd noticed at the bottom of one of the expander balloons is not as pronounced! I felt that it looked slightly less pointed after last Monday's appointment, and Dr. Walsh made the same observation this morning during the fluid injection. We'll still be watching it closely, but Dr. Walsh feels that as he continues to add fluid it will continue to smooth itself out.

Last week I asked what sizes the expanders were; he'd told me before the surgery in December but I couldn't recall what he'd said. I am interested to keep track for myself and Paul, to have something of an idea when the next surgery, the actual reconstruction of the outer ear, will happen. Dr. Walsh told me that the upper expander is 25 ccs, the lower is 125 ccs. They allow for 150% expansion, so the maximum the upper will hold is 37.5 ccs, while the maximum for the lower is 187.5 ccs. As of today, if I have the amounts correct, the upper expander has had 5 ccs added, the lower 37 ccs.

Presuming that the amount injected each time--to the lower expander, which will take longer to max out, so it's the one that's really driving when surgery could take place--stays the same (10 ccs), we're looking at the end of April/beginning of May as the time at which it'd reach its maximum. That's if all goes well, no tears or anything. Then, Dr. Walsh said, we'd wait a month for the skin to stabilize before he'd do the surgery. That would put us in the ballpark of end of May/beginning of June for the reconstructive surgery.

As I've intimated, this is the absolute best-case scenario, with no problems arising along the way such as the point not smoothing out over time and causing the skin to tear when fluid is injected. Please pray that everything will continue to go well, that the weekly fluid injects would happen without incident, that that little point would continue to smooth itself out, and we'd attain the goal of maximum expansion for the reconstructive surgery!

Dr. Walsh did say, too, that once the expander balloon is at the 100% mark any extra expansion he's able to get (and he wants all he can get!) would be icing on the cake.

On another note, we are one step closer to deciding on what to do about legal action. Today I had a conversation with the lawyer. He went over some of their opinions as they've checked into this, and we are trying to find a suitable time soon to meet so they can go over this with me and Paul, so we can say what to do. Pray that we will be able to have this meeting soon, and pray that the logistics will work out. One vital piece is having someone care for our children, as this would not be a meeting where we'd want them to be present.

Next Monday afternoon Paul will see Dr. Roehr after his therapy sessions. It's his "two months since discharge" appointment. I'm sure he is hoping that he will be cleared to return to work; that is one of his greatest desires. My guess is that that won't happen, that he's not recovered enough for it. He and I have talked about this some, and I seek to encourage him to see that they won't "hold him back" unnecessarily, that the doctor and Lindsay and Jen have seen LOTS of people through such recovery, they know what the usual pattern and sequence and timing is, they have the experience and they know what things help and what things hinder. My prayer is that Paul will grasp that they do know what they're doing, and will submit to their direction through this journey. 

Wednesday, January 18, 2012 12:47 PM, CST

Almost as soon as I finished last night's post I remembered what else I had had in mind to mention!

I have not yet tackled the matter of the lawyer and what he thinks could be done in regard to this situation. As he put it when we spoke a couple weeks ago, it would be steps to take to safeguard our family's future, particularly our financial future. I am shying away from bringing it up--partly because it means talking to and working with a lawyer, and Paul tends to dislike that reality, and partly because I am not sure just how to present it. Please pray for me to have courage to speak of it, and the best words to present it, and pray that Paul will respond positively. I believe if he can hold to the thought that this is a way he will be active in providing for our family while he is not able to work as he wishes it may go better. Furthermore, hearing what the lawyer has to say doesn't commit us to action (but most likely we would take his advice and let him work on our behalf). It is hard, as there is still the tension that Paul can understand and is able to say yea or nay, yet he is not fully able to make all the decisions, and that could face us with a dilemma if I say we should do one thing and Paul disagrees. Normally he, as the head of the home, would have the final say, but right now...I am still operating from the perspective that until he is fully recovered the final decision rests with me. The hardest part of that is feeling that he disapproves of what I decide, if that should be the case.

To his credit, Paul does yield more or less graciously. The other day--Tuesday, I think--he commented that he doesn't think that the therapy sessions are doing any good. That didn't surprise me; Paul usually doesn't "go for" therapy, even physical therapy. He'd rather have the physical therapist show him or tell him what to do, and then just do it on his own. I think, as far as his cognitive recovery goes--and that's what his speech therapy and occupational therapy sessions focus on--Paul figures he'd do just fine doing things on his own, such as working through a math book. I replied that the therapy IS helping; they (Jen and Lindsay) are working with him to give him tools and strategies to use as he learns things, and they continually assess his ability to understand what he reads (a newspaper, for example), to deduce things, and so on. So he's not agitating about ending the speech or occupational therapy--he isn't thrilled about it, but he's not fussing about it. Do pray that Paul will see the small steps he makes in regaining cognitive function--to see them, and to see that they add up to the big progress he really wants.

Last, and this IS truly more about me, I found myself deeply gladdened by a phone call later yesterday afternoon. Paul and I had had a rocky moment, I was hurting, and Marti, who is our BCBS caseworker, "happened" to call. It helped me to talk with her, to let some of the emotions roll off. I laughed at the end, when I was feeling ready to soldier on through the rough moments, that she knows when to call--when I am struggling and really need to talk, to have someone just listen. In my view, that is God at work, and I am so grateful! 

Tuesday, January 17, 2012 9:23 PM, CST

As I begin to write tonight I find myself thinking that this is going to be another of those entries that I apologetically describe as "mostly about me". That may happen, and it's true that most of these updates now reveal a lot more of my perspective, simply because there isn't as much medical news to share. It's more of Paul's cognitive recovery, and relational matters, and managing life.

Having said that, tonight I do have several medical concerns to speak of (and now we'll see if my brain allows me to remember them all!). First, Dr. Walsh confirmed that there is a potential problem with the skin expansion. Paul had noticed, and I had, and Dr. Walsh observed as well, that there is a point at the bottom of one of the expansion balloons. During Monday's fluid insertion Paul brought it up and Dr. Walsh replied that he had noticed it, and had gone back to the x-rays to confirm what he thought. He concluded that somehow the balloon creased or folded there, and created this little point. It's at the bottom, so gravity works to put pressure on it, which is not good. It could cause the skin to tear, and then we would have to make a decision--go ahead and try to do the ear reconstruction with whatever skin is available, or remove the expanders, let it heal, and restart the whole process. There's no way Dr. Walsh could directly get rid of this point; he is hoping that as he continues adding fluid week after week that it will smooth itself out and we'll have no difficulties. He advised that Paul try to lie down two or three times a day, for maybe ten minutes, and reduce the pressure of gravity on this--not that that is easy to accomplish in the middle of life. We will be watchful, and obviously we are praying hard that this resolve itself.

Aside from this point problem, Dr. Walsh is pleased with how things look. He remarks each time that Paul has good capillary refill; he presses on the expander balloon and watches to see how quickly the skin "pinks" back up. It's almost immediate, and he commented Monday that the expander is laughing at us--the amount of fluid isn't even stressing it!

Last Friday Paul had the first of his three dentist appointments. He has a temporary crown (for two weeks), and the worst of the three cavities was also filled. Next Friday (the 27th) he'll go for the crown itself to be seated, and he'll have a second cavity filled. And then the following Tuesday he'll have one more filling and a routine cleaning as well.

When we were there on Friday Dr. Constantin recommended that Paul use an electric toothbrush. I'd purchased one while he was at Knapp, per their advice, and he'd used it a bit, but preferred using a regular toothbrush. Dr. Constantin explained that Paul is not thoroughly reaching the back teeth, and that probably contributed to the three cavities. He's supplying us (Paul) with a higher quality electric toothbrush, which he believes will make it much easier for Paul to do a thorough cleaning job on his teeth and minimize future cavities.

Next, I had contacted the Orthopaedic Clinic at HCMC, inquiring about getting Paul in to have his shoulder looked at, since he is having more pain. The scheduler had to refer the matter to a nurse (who would be able to overbook the doctor), and the nurse would give me a call. Well, that was supposed to have been by last Wednesday--ha. The nurse finally called YESTERDAY, and Paul would've had to wait till February 22nd. Since this has been bothering for a few weeks already...Paul agreed to have me see if I could get him in to see someone somewhere else, and I did.

He has an appointment on Thursday (yep, day after tomorrow) with an orthopedist he's seen before. Lord willing this will give an answer to what is causing the pain and what can be done to alleviate it.

That right now is the medical update. As for other things...these will mostly be "please pray for this". Pray that Paul and I will keep working through the communication issues, and other points of tension between us. We had some heated moments this afternoon. I am thankful that even as hard it is to encounter these conflicts we are managing to come through it. God is gracious for that, and we are taking steps forward to regularly meeting with a couple to be helped as we struggle through communication and interpersonal issues. Pray that God will help us in this.

Please pray that practical needs will be met. Neither humiliating nor humbling quite fit how I feel as I cry out to God for people to hear of and respond to needs as they are presented via the care calendar, or sometimes in one-on-one conversations. Whispers of "you're imposing on people" run through my mind. It's hard to keep hold of reality, hard to ask for help...yet I was led to recognize that I NEED to do this, need to lean on others, admit that for this season saying "I want to be able to do this, but right now it's just one straw too heavy, and it's all right to ask for this piece to be lifted for the time being." I pray that I will walk this well--being honest about the need and the emotions that come at me to make me draw back. He was so good to help me speak to this at MOMS today, and showered me with "we are here to serve" around the table. That was a gift, and so was his provision of a meal for tonight!

An urgent practical need that's looming is someone to be here with Paul and our younger two Saturday morning. I must attend a half-day of school with our oldest, so the need is someone to companion with Paul and back him up as dad for those hours. It's urgent because if I can't go I would have to arrange for a two hour block of time during the week to go to school (to make up for missing Saturday school), and in all honesty, that would be a lot harder to arrange, to get someone here on a weekday morning, especially with homeschooling!

I have hit a point of "I cannot remember what else I wanted to say here," so ... thank you, God, for your care, your sustaining grace, and all the people you are working through!

Thursday, January 12, 2012 9:41 PM, CST

Tonight seems to be another of the "mostly me" updates. In the last few days I've had more than one person remark on how hard this is for me, as I am the one managing everything. Part of me cringes to hear that, because Paul is hugely affected by the TBI, and he's struggling with the recovery that is so long and so slow. He aches to be able to work again, to have that dimension of life back, to feel that he is worth something. I think with each day of therapy and each homework assignment he is given, each time he tries to read and study something, Paul realizes that (as he puts it) his brain is not working well, or as it used to. He feels that he is just trouble around home, that when he is struggling to understand something and is asking questions, pressing for answers, and encounters frustration or irritability from me...he remarks that maybe he should go away because he's just a problem, a bother.

Another part of me wants to exclaim, "Yes! This IS hard for me. Here's how..." It's easy to lose sight of how I am affected when I consider how Paul is, and easy to lose sight of how he is affected when I focus on how tired, or stressed, or strained, or exasperated, or lost and confused, I am. That's the part of me that aches for someone to hold me, let me rest my head on a shoulder; give me a few minutes of peace and relief from all the bustle of doing.

Ultimately, it's God who is the person on whose shoulder I may put my head and find real rest and relief when it's all seeming to be too much. Having different people remind me they have some sense of the challenges I face as the well spouse, the caregiver, has been sweet. I've also sensed God reminding me to pray--to pray for Paul's physical healing, for the relational and other issues that have come more and more to the fore as we walk through these days, for the needs that we have as a family, where I am falling short and need to ask for and receive help. I struggle to ask for help, to pray for it. Like Paul, I feel that it's an imposition to ask for meals, or someone to be here with him, or with the children, when I have to be somewhere. God has been pricking at me on a mindset that I have seen over many years: I will ask, yet there is a great sense that no one will respond, and I shy away from entreating the Lord to meet those needs through other people. I can only guess at how God the Father grieves when I, his child, doubt he will lavish--and that is a theme that I have been struck by over and over--care upon me, and upon my family.

Fearfully, then, I am seeking to be bold to ask that you pray for me to pray that God will bring people forward to meet the needs that I share on the care calendar (meals are a big part, and company for Paul and the children another) as well as the needs that I don't, the ones I am not even really aware are needs till they've been met! 

Saturday, January 7, 2012 10:26 PM, CST

Paul has continued to express more and more often that his left shoulder blade bothers. Please pray that 1) the pain will be tolerable and 2) that I find my way through to getting an appointment set up for him. As I wrote before, I am not sure what the procedure should be, if we ought go to HCMC Orthopedic clinic or elsewhere. Someone from Ortho saw him while he was at HCMC initially (right after the accident), and Bethesda set up an appointment for him just before he was admitted into Knapp, so I haven't actually needed to make such an appointment. My idea is to begin with the outpatient social worker, to get some clarification on this whole matter--do I need a referral, who did he see and for what, what is the clinic number?

Today I have been feeling exasperated and frustrated, and that Paul and I are doing an excellent job of stepping on each other's toes, not being as kind and helpful to one another as we wish to be. He wants to help out in any way he can...one that he keeps coming back to is getting groceries. He was over at an auto parts store the other day and noticed Aldi's, went there and liked the prices...so he wants to go and get various things he saw that are good deals. I'm all for saving money, but it's frustrating for me when I have tried to explain why I wish to use a grocery delivery service and have it set up, and place orders regularly--and then have him sticking on "I could do this." I know he's very "do it myself" oriented, and he could get some good bargains. It seems that he doesn't "get" how it comes across to me. Pray we'd navigate through this, and through other moments where what I wish and what he wishes clash (like this afternoon as I prepared to call everyone, Paul included, for the errand run...because he's not yet cleared to be home alone for four to six hours...and he griped about it a bit, and we were looking to be headed for loud conflict for a few minutes there).

A third matter to hold in prayer: this coming Monday evening Paul will begin to attend the Cub Scout meetings with Samuel. As a Tiger Cub, Samuel is to have an adult partner, and another dad graciously filled that role during the fall. I asked Paul if he would like to move into this role for our son, and he said yes, and then expressed his reservations about his ability to think as well and as quickly as he would need to, to do things with Samuel. I trust that the other men will come alongside him and give encouragement and support as he participates with Samuel. Pray that Paul will be able to handle this activity, that it won't be too much stress for him, or leave him feeling that he is worthless because he can't do even simple things.

Thursday, January 5, 2012 4:04 PM, CST

Appointments and more appointments seems to be the name of the game right now. As the master calendar keeper (and oh, am I thankful for my palm with its calendar, so I can keep five people's activities straight!) I'm seeing the month fill up with various appointments. Paul's weekly therapy sessions have been a regular part of our days since he was discharged from Knapp; those are ongoing, and now we're adding weekly sessions with Dr. Walsh for the ear expansion. I keep debating what to call that--it's not actually Paul's ear being expanded, it's the surrounding skin so when Dr. Walsh does the actual ear reconstruction there is enough skin available to cover the new ear. I suppose skin expansion is most accurate. Anyway....

Because of the New Year's holiday falling on Monday we coordinated to see Dr. Walsh before his surgery schedule began on Tuesday. As he put it, he squeezed us in to do the first fluid insertion into the expander. It went smoothly; he only added 3 cc's of liquid, explaining that he starts small. How much he will add during future appointments is not clear--as much as he safely can, he had told me once. Normally we will have this appointment with him on Mondays, unless Dr. Walsh isn't in clinic some week (which does happen). In those cases we'll try to fit in an appointment another day, as he wants to keep this on a weekly basis. We have the next two set up, and will schedule out a bunch more after that, as we see how the timing works.

I admit, it is going to become a bit crazy with these appointments starting next week, as we will resume school. I had thought that coordinating Paul's appointments with Dr. Walsh, Jen and Lindsay made the best sense, and perhaps that still is the case. Looking ahead to it right now seems a bit more burdensome than things had been before Christmas--I think it's simply that we'll be out longer on Mondays when Paul has all three appointments. The children are grumping a little about having to haul school along, and Paul is chafing to be cleared to travel the light rail alone to and from therapy so we don't have to come along and bring school. That's been a tension point for me; certainly I will enjoy the simplifying of life when he can go to and from HCMC alone for his therapy sessions, yet it's been a sweet opportunity to serve him by doing what he needs, so feeling that he's pushing to get the "all clear" has a hurtful element, too--I feel that he's pushing me away, refusing to let me care for him.

I continue to remind myself, and Paul, and the children, that this is the way it is for now, for this season of our lives. It's the reality of where we are now, what we need--it's why school travels with us, why we're not proceeding as fast through non-core subjects, why I use a grocery delivery service and share needs via the care calendar.

Digression aside, in addition to these regular appointments we've tossed dental appointments for Paul into the mix, an appointment for me, and it looks like we'll need to work in an orthopedic followup for Paul. He's had continued pain with his scapula for a few weeks now, and it seems that we ought check it out, as we did with the oral pain he's been mentioning. I was able to get an appointment with his dentist yesterday to see what is going on. Verdict: three cavities and a cracked tooth that needs a crown. Yippee. So we've three appointments set up over the next few weeks to deal with those, plus Paul will have a regular cleaning. I'd hoped to figure out how to proceed about the orthopedic followup; he's been seen a couple times at HCMC's ortho clinic, so it makes sense to go there as they'd have xrays and such. The day's slipped away from me, so making that call goes to tomorrow.

As if all this, and the relational issues in the home and family weren't enough to keep me busy (besides all the household, school, and other responsibilities), I had a call from the lawyer I had contacted earlier on in this, about what if any legal action might be feasible. He'd like to meet with us to discuss what he thinks could be done, which faces me squarely with presenting this matter to Paul. He will give me some information that may help me figure out how to broach the subject. Pray for wisdom, and for Paul to be open to consider these recommendations as ways to serve and protect and provide for our family, and our family's future. I honestly cannot get my mind around taking action on this right now; January feels so full with medical and dental stuff, and the weight of the relational and communication challenges that one more piece is too much. I realize that I cannot let it wait very long, so pray I would be given grace to cope with it when I need to, not when I want to.

Saturday, December 31, 2011 10:40 PM, CST

Post-post office visit

From what Paul said, things went well with his time at the post office today. He buddied along with someone else and was able to complete a "homework" assignment from Lindsay for his next therapy session. He came home almost glowing; though he couldn't DO anything actively there simply being in the workplace, with fellow employees, enjoying the camaraderie they have with each other, was a huge positive for him.

I wish I had more details than this to report, but at the moment this is all I have! Nothing definite has ben set up for another time to come in as he did today. My feel is that we will let it rest with Tim L to orchestrate, trusting that he will give a call to set up the next one when he is able to.

I imagine that Paul will tell Jen and Lindsay more specifics about today than he has me--partly because they are likely to ask more questions as they seek to discern the wisdom of these times. Regardless of what develops, today was a wonderful experience for him, and I think has relieved his mind immensely about the future of his job!

Saturday, December 31, 2011 1:32 PM, CST

Pre-post office "visit"

Paul is, right now, out at the park with Samuel...in about forty-five minutes, if they're not back, I'll run over and get them so Paul is ready to go when Tim stops by to pick him up. I presume Paul is keeping track of time, but this is a little earlier than had been said the other night.

Please pray that all will go smoothly with this. Paul is, naturally, eager to work, but 1) he is not cleared, medically, to be working, and 2) postal policy dictates that he cannot touch the machines or do anything on or with them as he is not "punched in". Indeed, he is officially on FMLA, and there could be all sorts of problems if he does anything. So pray that he will accept the restrictions, the limitations. Pray that he will shadow and watch and allow information to flow in, and that he will enjoy the time with coworkers, talking with them and watching their work. It's our belief that this will aid in his cognitive recovery, so this is a test of that premise. How today goes will provide information for Jen and Lindsay, and us, to assess what is helpful and what is not. I've suggested sticking to a weekly excursion to the post office; I believe that Paul will find it tiring and he'll need the week between visits to absorb the data from one trip before adding another.

I hope to post again later, after Paul is home, with how things went. I'll definitely have his perspective; I trust also to have Tim's perspective, or anyone else who has engaged with Paul today.

Thursday, December 29, 2011 9:08 PM, CST

Today Paul spoke at some length with me concerning his discouragement about his inability to think as well as he could before the accident, and the reservations Lindsay (speech therapist) in particular has about his going into the post office. I didn't get a crystal clear reason for Lindsay's reservations, though. I suspect that it's partly concern that he is trying to do too much, too soon, that it would be overwhelming and frustrating to him, and maybe could even slow down his overall recovery. He stated over and over that he doesn't think it would be a problem, he wants so very much to get in there and begin to relearn things, he'd love to go every day and shadow fellow employees. I laughed a little and teasingly asked if he is from Missouri (the "show-me" state, so called), because it seems that until he sees something for himself he has a hard time believing it could be true.

As we talked Paul remarked that he is struggling with feeling useless to the family, that he is not contributing to it or really providing for us as he once did (going to work each day, doing things around the house, doing things for me or the children). I would venture to guess that he is facing feelings of depression as he looks at present circumstances--he isn't able to go to work, to do the job he had, he's worried about being gone "too long" lest the post office deem him dispensable (and then what would he do to provide for the family?). He wants to know WHEN his brain will be fully recovered, WHEN he will be able to go back to work, and that is something that neither I, nor the therapists, nor the doctor, can answer. We simply do not know when or even if he will get back to where he was, and that unknown is a scary one.

He desires each day to study, to learn, and each day feel that he has accomplished nothing during the day--no studying, no progress in learning things. He told me that he is only able to do very basic math problems, that even when he reads Scripture he comprehends the words but the deeper meanings escape him; when he reads something to Samuel it's the same, he recognizes the words, but he doesn't grasp the story line or remember things after he's read them. These things are discouraging to him.

We went round and round on the planned outing to the post office this Saturday. As I mentioned, Paul wishes he could go in every day and make progress (re)learning the job. Lindsay apparently has voiced more reservations than Jen, though not a definite "No." I suggested putting off this first time for a couple weeks so we could talk further about it with Linday and Jen, but Paul kept saying he didn't see how it could be wrong for him to be in the environment for three hours, shadowing someone, refamiliarizing himself with procedures and machines (NOT doing any work, just watching). This is where I concluded that sticking with the plan to spend three hours there this Saturday would be good; it will give him that opportunity to start to refamiliarize himself with things, and I believe it will also help him to see clearly why we (Jen, Lindsay, medical folk, and I) are holding the reins rather tightly. I reminded him how he'd been so surprised at how worn out he was when he first came home from the hospital, how it seemed to him that he'd regressed in his ability to do things, how often he zonked out, and that he very likely would find that three hours once a week is quite enough at this stage of his recovery. He may well need the week between visits to allow the information to sink in, especially since there is still plenty else he is taking in and must absorb and put into order.

To end on a more chipper note, Paul walked (solo) over to the nearby Target this evening to get a watch battery. He had no problem other than the two-way radio he carried to communicate with me (rather than my cell phone) didn't seem to work; he didn't receive my response to his signaling at first. We'll have to figure that out, but we do know now that Target some three-four blocks away is within the radios' range. I'd like to figure out the extent of their range!

Wednesday, December 28, 2011 11:39 AM, CST

Last week during Paul's OT session he and Jen (the therapist) took a trip out and about, traveling on the light rail and walking around. This was an opportunity for Jen to watch and evaluate how Paul does with navigating safely and accurately, which is essential for him to be given the option of going places on his own--something he is very eager to have! He felt (feels) that he'd be fine, so he's really been chafing about the restrictions, and it's been hard to get him to submit to the "no, you can't go off alone" response I have had to give many times.

Yesterday at the end of his therapy session Jen came down with him to talk with us both about that matter, since there'd not been time last week. She had told Paul at that time someone higher up had to give final approval to the loosening of restrictions (I suspect that is why he didn't clamor for going out by himself over the intervening days). During our talk she said that she and Lindsay (the speech therapist) agreed that Paul is able for some lifting of the restrictions, that he could have some freedom to go places on his own. BUT it's not full freedom, no restrictions yet. She stressed that it's a process, that limits will be lifted a step at a time, we'll watch how it goes with each step and take the next when it's clear he's ready.

Jen also stressed that the limits are as much for our (their, the doctor's, and my) peace of mind as for his safety. She asked Paul to be willing to compromise--to follow the steps that she outlined for us to be comfortable with his enlarged freedom. He agreed, slightly grudgingly, but with a measure of understanding and acceptance. The hardest bit for him to bear, I think, is that the time he most wishes to go off by himself, to walk around, is the time he is least able to do so--when he's upset or frustrated, when we've be engaged in a heated conversation that is stalled. Both Jen and I mentioned that when emotions are high, as in those situations, we are not as aware of things and it would be much easier to neglect to look before crossing a street or something. I'm not sure Paul believes it, though.

The other thing Jen reminded Paul is that if he doesn't like the restrictions, the limits, the "no, you can't do that yet" from me, to not be angry with me, because I'm following THEIR orders, so he needs to come in and yell at her. She can take it, she said, and she's paid to take it! He laughed at that.

At present, then, Paul has the go-ahead to go out for a walk, go to the library or a nearby store. He's to call when he gets where he's going so I know he's made it safely, then call before he leaves to head home (and give me an ETA). As I said, this is for his safety and also for our peace of mind.

Jen was somewhat tentative about Paul going into the post office. She was somewhat relieved to hear from me that it wouldn't be the whole shift, and that he wouldn't be doing ANY work. That is a major factor, as he's not cleared yet to return to work. To simply be there and shadow others is fine, and for a few hours is likewise fine. They will talk further about it tomorrow during his therapy session; I believe she was going to communicate with Dr. Roehr so she'd have her input by tomorrow.

We are continuing to figure out how to address the various relational and interpersonal issues that Paul's accident have brought into greater focus. Pray for this, for wisdom in what to do and when and with whom (both who to seek counsel from, and which members of the family to include in each instance). It seems to me that different combinations of us with different individuals who can help us navigate through things is best, so I'm faced with figuring who and when and with whom. God has opened several possibilities, so it is partly a matter of putting the pieces together. And pray that God's grace would cover our family through this journey, that we would be protected from Satan's attempts to destroy us individually and as a family.

Friday, December 23, 2011 10:40 PM, CST

A blessing for Paul

This evening Paul and I were trying to take care of a work-related matter; I'd attempted signing on to do it online, and the system didn't like the passwords I tried, so it locked his account. Urgh! Paul made a call and we had some conflicting information, couldn't get through via phone again, so Paul suggested going down to the main post office to see if we could find someone who could help. I wasn't thrilled about going out again, but I agreed, and am I glad I did!

First off, we did get the issue we needed to deal with resolved, though it took longer than I had hoped, with more steps than expected. But the duration and difficulty of the process afforded time for several coworkers to stop in and tell Paul they were glad to see him, that he's looking good, they are anticipating the day he is able to come back to work. I felt that as soon as one person heard that he was in the building he'd relay the news. It was encouraging to see this; Paul has been concerned about his job, worried that if he's gone too long he'd not have a job to come back to. This was reassuring for him.

Most thrilling to Paul was the inquiry as to his interest in coming in to "hang out" with the employees--to have lunch with them, then shadow someone or another for a while. Their feeling was it would give him an opportunity to get out of the house, be with other people, just be in the work environment and start to get comfortable with it again. This was something he and I talked about as a possibility, but we hadn't pursued it. Paul didn't hesitate a moment to say yes to this; he is absolutely thrilled at the prospect, very eager to get in there and start picking up the job again. Please pray that he would cheerfully accept the limits that have to be in place for his and others' safety. Someone will pick him up and bring him home, and this will first occur next Saturday.

I am so glad for him, so filled with rejoicing that God is at work in this, having put it in the mind and heart of people to organize/arrange. I believe this will do a lot to encourage cognitive recovery, and that it will do a great deal to alleviate his anxiety about his job future. What a wonderful Christmas gift (a few days early)!

Thursday, December 22, 2011 11:52 PM, CST

More and more as these days pass I realize that the focus of this experience has shifted from the physical to the emotional and relational. These are hard things to work through, and hard things to speak of here. It was easier to detail physical matters--what Paul's injuries were, what was being done to treat his injuries and help him recover. As he progressed physically, waking up and beginning to interact, participating actively in therapy it was still fairly simple to outline how he was doing. Those things were much more tangible and in a way less personal.

Now, though, other things are pushing their way forward, and I find it much more challenging to write these updates. Certainly there is still physical recovery to go, and I will keep those details posted! Finding the balance of how much to share here when what is happening involves family dynamics and marital dynamics and parenting dynamics is tricky.

I realize that some of what is bubbling in these dynamics IS directly linked to the reality that Paul suffered and is recovering from a TBI. Early on I heard it could be a year or more before he's fully back, and it's possible that there will be some things that are permanently lost. That his sense of humor was not one of them was a relief and a blessing! Like it or not, a TBI has a major impact on so many aspects of life; for us, it has revealed (is revealing) issues that need time and work to resolve, and it makes it harder to work through them!

Please pray for me and for Paul as we face these challenges. He becomes frustrated and begins to verbalize certain thoughts, which frequently rattle me and send us quickly into a downward spiral of communication--or, more accurately, miscommunication. God be praised, we have been doing some better at getting through the sticking points, and that is encouragement that we WILL get all the way through this. Pray protection and perseverance, and a renewed commitment to stick it out, see it through, and see God work. Pray that our children will be secure; the turmoil of these communication clashes is particularly frightening for our youngest. (It can be frightening for me, too!)

Something that came out this evening is Paul's sense that no one is interested in visiting him now that he is at home. He feels that people were so faithful to come and visit while he was in the hospital, but now the visits and calls have all but ceased. I don't believe it's a lack of concern or interest; certainly the continued visits to this page and the messages left for us, and the practical care we are blessed with, assure me of loving concern and interest! So, to me, this is in part lies from the enemy that require prayer and truth to overcome.

As I bring this to a close tonight I want to mention that things are looking good to begin the fluid injections (for the ear expansion) right after New Year's. We saw Dr. Walsh this past Monday for a quick check, and he said that everything looks very good and we're on track for that. There is as yet no indication when the next ear surgery will occur. I surmise that as the expansion proceeds Dr. Walsh will begin to be able to suggest when we might be to the point where surgery may take place. Please pray that it (the expansion) goes without a hitch, no complications (having to stop and restart this process, or needing to rush with the reconstruction when there's not quite enough skin to adequately cover the new ear). Those are two scenarios that Dr. Walsh painted (bad/worst case scenarios).

Also, during his OT yesterday Paul and the therapist went on an excursion so she could begin to assess how he might do with lifted restrictions. It is a relief to me that he perceives they ARE addressing this, and he is much more amenable to the reality that there's someone higher up that the therapists who makes the final call about this. He is still very inclined to the "I'm going to do this (go out for a solo walk or something) even though they haven't cleared me for it, because I am doing just fine." It's hard for me to cope with this, especially when it often comes up when we are having a miscommunication issue.

Tuesday, December 20, 2011 9:31 PM, CST

Two things are most on my mind this evening as I write. I'll begin with the easier one: For the past couple weeks, since the day conflict erupted, Paul has been experiencing some pains that he didn't have prior to that. The pain hasn't worsened significantly, and during his couple days in the hospital he had some scan done to check the pain in his side that he mentioned to the doctor then. That showed nothing, so the lingering pain has been a concern to him. I would reply to keep mentioning it to the therapists (thinking they might relay it to the doctor and there'd be a check), and asking if we should call our own family physician. So far nothing has really happened on that score.

Today he asked me if it seemed that his right shoulder blade, the one that was fractured in the accident, stuck out further than the other. It does seem more prominent, and Paul remarked that it's been more painful. Again, letting the doctor know is about all I can suggest, though exactly which doctor should be contacted I'm not sure.

Earlier this evening Paul asked that we pray for him, for these pains, for healing. So I and the younger two (oldest was at his school Christmas program) laid hands on Paul and prayed for healing, for wisdom, for direction. We shall see what develops.

The doctor issue weaves in with the second thing most on my mind tonight. At the time of Paul's discharge from Knapp we were told to schedule a followup with Dr. Roehr in a couple months. I concluded that Dr. Roehr is the one to whom information is funneled for Paul's whole case--she is the neurosurgeon, I believe, and it seemed to me that she was the primary doctor. I assumed that updates from the therapists would go to her regularly. Today, though, in the course of several discussions Paul blazed forth that the therapists are surprised that there's been no doctor contact since he left the hospital.

This particular conversation was a heated one, and a time or two it seemed on the verge of blowing out of control. Samuel's distress at the rising voices and frustration between Paul and me did the most to rein Paul in. He is frustrated by the restrictions placed on him--he cannot go places by himself, cannot make decisions for himself--and it seems to him that with no doctor checking in, the therapists unable to clear him for less restrictions...he is chafing more and more. Early in this spiral (it went through a few rounds) he announced with much determination he plans to push hard on this matter of being allowed to go places on his own. I fear that he will come across as demanding, will insist on having his way, will not listen to their reasoning and explanation, will not respect their decision if it is contrary to his wishes. I see these things happen with me, especially as relates to me being "in charge." Repeatedly he has leveled the charge that I enjoy just telling him what to do, that I have no consideration for him, no respect for the fact that he IS an adult, he HAS made many decisions for himself in the past, he IS able to do more than the doctor and the therapists think he can or allow him to. Perhaps I am not always as gracious as I could be; I do try, yet the strain of handling everything, juggling five people's schedules and all the tensions that are bubbling as we walk through this experience--I'm trying to decide as wisely as possible given the circumstances. It is frustrating and discouraging to me to have him make the sweeping statements he does (like, "I am not worth talking to, I'm a horrible person to try to talk to."), as there is really no way I can disprove his claim short of answering in line with what he has decided, what he wants.

An additional irritant in this is his bringing homeschool into the equation. As he cannot go to and from the hospital alone for his therapy sessions I and the youngers have packed up school and brought it along. It's not ideal, but it's not an immense hardship either. Today, though, he added that into his kick about having the freedom to come and go on his own! First he remarked on it to me, and cut me off as I tried to say what I've just said. That was one of the moments when things nearly exploded; in my opinion he wasn't listening beyond my partial answer of, "Yes, it'll be nice to stay home and do school," because that is an argument he will use tomorrow when he really pushes the therapists on this matter. I think he "got" that I was unhappy with his tactic...and then he brought it up with the children, asking if anyone listens or makes comment when we do school there at the hospital, and if they like it. Urgh!

As you can see, this is a touchy issue. I realized that one reason it cuts at me is that I have felt useful, needed, in his life during this, and now he is grabbing back all his autonomy and leaving me little space to participate in his life, to help him in active, meaningful ways. I recognize that it's partly that he delights to serve others, yet it's hard to get him to allow others (me, particularly, it seems) to serve him.

Please pray that Paul will discuss this kindly, with courtesy and respect, with the therapists tomorrow. Pray they would come and talk to me to get a fuller picture. Pray these rankling things about the doctor would be addressed and dealt with. Pray grace over it all--it may not be a happy morning with therapy, or a happy day as he grapples with whatever outcome it has, particularly if it's not what he wants...which in my opinion is full freedom to do what HE wants regardless of physical or cognitive limitations. It is frightening, and the weight is heavy on me tonight.

Thursday, December 15, 2011 8:56 PM, CST

A "how I'm doing" update

Every now and then I do an update that's more about me and how I am doing with all this. With Paul home, things shifted some. It's still a marathon and there's still no clear endpoint. I wrote once before of how no amount of telling me about the 24/7 supervision that would be required could fully prepare me for what it was like, and how I couldn't answer what our needs would be as I looked ahead to his being home. I had to live it, had to see how things unfolded and the stresses that emerged along the way to recognize what we need, what will be helpful.

Paul has been home for over a month now. He has regular therapy sesions (OT and speech therapy), usually twice weekly. It's been working fairly well for me and the younger two to accompany him down to HCMC; while he is in his sessions we do school, and if time permits pleasure activities. It will be a little dicier as the weekly appointments to add fluid to the expanders kick in, but we'll sort that out as it happens starting in January.

While there are some ongoing medical issues, the bigger stress is in family dynamics. With Paul home 24/7 life is different. The children are not accustomed to his constant presence, and they don't know quite what to do with his involvement. Prior to the accident he'd be gone in the afternoon and evening five days out of seven, and we had our routine for the days he worked and the days he was home. Then, while he was in the hospital the children and I developed a routine for the four of us. (Aside, the children didn't see how difficult it was for ME to be a solo parent; they only saw that I managed, and we were doing well--true enough, but they missed how alone I was in this.) Then Paul was ready to come home, eager to come home, and we hit a new phase of things. In addition to the 24/7 aspect, Paul is still recovering, is still struggling to regain cognitive capability, is still figuring out how to relate to us (and we've all changed during the three months he was in the hospital), is frustrated that he cannot drive, go to work, have the independence he had before. Add his distress over the strained relationships in the home and family, and his bent to make them better NOW, and you can guess at some of the tensions that we are working through.

So, how AM I doing? There is no simple answer to that question. I am weary. Again, this is a marathon with no known endpoint, meaning that I don't know how far we've still to go and how to pace myself for the long haul. It seems often that just as I've found a pace something changes and I must adjust, and the weariness slows my adjusting. Until further notice I carry the full responsibility for the family's life. Paul helps as best he can and he is capable of doing much. He's generally gracious about deferring to my decision-making; it's hard for me, and can be frustrating, as I wish to honor him and yet must DO. I'm not sure how to better expalin that.

While there is a physical component to the weariness I feel, it is even more emotional. As the linchpin in the family, I'm managing a host of interpersonal relationships. If I'm remembering rightly, with five people in our family, there are twenty different relationships! Right now a majority of the interactions go through me, as I try to help each child adjust to Paul as he is now, and handle my own relationship with each one. Toss in their relationships with each other--yeek.

God's grace has carried me more times that I even fully realize as I cope day by day with this reality. What I've begun to recognize more and more over the past week is how the relentless strain of 24/7 people around me is draining me. It's something I know from years past--I need private time, alone time, to recharge, and that is virtually impossible to get at home these days. I see it manifesting itself in a diminished ability to quickly process and cope with things, forgetting details, being overwhelmed and slipping into inertia because it's simply too much to figure out what to do.

So, as I've considered things in the last week, I've come to a couple conclusions. There is a part of me that feels humiliated to admit that I can't manage certain things; I know that the truth is it's good to admit where I need help and that this is a season, it's not going to last forever. As I've said to a couple people as I've reached these decisions, I know that it's all right, but please tell me that it is okay.

Earlier today I posted a brief update that meal needs were changed. For a season I truly need our evening meal provided five nights out of seven. Day after day I found myself thinking about four o'clock in the afternoon, "Oh. I need to figure out something for supper." Problem was, I hadn't planned anything, didn't have ingredients on hand (yep, the grocery shopping is another piece of this), nothing was defrosted...so supper many a night was something slung together at the last minute. Not good, in my opinion. My thinking is that the lifting of that task will give me enough space to begin to manage better the other daily meals and snacks that my family needs, and eventually to "take back" the evening meals. So, on the care calendar now five days each week are calling for someone to minister to us with a meal. I am trusting God to cover this, as I believe he led me to this decision.

In like manner, I am coming to the conclusion that using a grocery delivery service will be a great help to our family. I recognize that it may be a bit more costly than shopping a store in person, taking advantage of the ad flyers and sales and coupons; prices and options might not be as good, and there will be a delivery fee, but given the circumstances, my sense is that this is the best use of our resources, including me!

What I haven't fully figured out yet is how to attain the respite time I need. It's something that has to be balanced into our family life, along with husband-wife time, father-daughter time, father-son time, mother-daughter time, mother-son time, parent-children time, family time, and private or individual time. Over these months since Paul's accident our family schedule (or routine) has gone by the wayside. I have managed to maintain our school schedule somewhat, but even that has been much more lax than is beneficial, so I am working toward firming things up and getting back on track.

As I close this update, I ask in particular for your prayers. Pray that I and all of us would find our way as we navigate this unknown sea. Pray that we--especially Paul--would hear and listen to truth, and trust God to guide us and give us fresh hope. It appears that Paul in particular is being bombarded by lies and needs covering. I am working on bringing help or counsel for us, in various combinations, into our journey; pray for these to come together and to be blessings to us as we work through the things that need work. It is hard, but good fruit awaits our faithful labor.

Thursday, December 15, 2011 9:26 AM, CST

Paul went in for his post-op check on Monday...all continues to look good following the expander surgery. Dr. Walsh removed the stitches and repeated keep using the Aquaphor on the incisions as they heal (keeping the moist promotes healing). He said that during the course of expanding the skin he will be keeping Paul's hair on that side shaved short; he needs to have the area around the ports clean for those weekly fluid insertions. This morning I grabbed the opportunity to get out the clippers and do a once-over on the rest of Paul's hair, so he's now sporting a quarter-inch buzz cut. The left side will be shaved closer, but I will leave that to Dr. Walsh--I'm not going to mess around near the expanders!

Paul goes for another check with Dr. Walsh on Monday--routine, to see how it's healing. Then we squeezed in an appointment early on January 3 for the first fluid insert. It's early, as Dr. Walsh normally does surgery on Tuesdays, but there's no clinic on the second and three weeks post-surgery is when the process of adding fluid gets started. So he offered to come in EARLY to do it, if we were willing to come at that time.

At that point, also, we'll be setting up "a bunch" (to quote Dr. Walsh) of appointments for the fluid inserts, which will take place once a week. How long it takes to stretch the skin enough is unknown; as this goes along I imagine that Dr. Walsh will be able to give us some projection of when, but we won't be scheduling the next surgery for a while yet.

Pray that all goes well as the actual expansion gets underway--for the fluid insertions to go well, for good amounts of fluid to be added each time--not too much lest the skin tear!--for the skin to stretch without tearing, for Paul to tolerate the discomfort and the temporary ugliness of having bubbles bulging on the left side of his head, and for all of us to be careful and cautious as those bubbles are expanded. This is particularly crucial for Samuel, who likes to pounce on and wrestle with daddy, and it's hard for him to remember always to be gentle since daddy isn't as strong right now, and is still healing.

Thursday, December 8, 2011 10:39 PM, CST

Paul is home again! We'd expected that he'd come home Tuesday after the surgery, then that he would possibly be discharged Wednesday...then that he'd be ready to discharge this morning (so I could pick him up after Samuel's Musikgarten class ended, since we'd be out and very near to HCMC already).

I called shortly after nine this morning to see what things looked like. Paul's nurse said that he'd been complaining of some abdominal pain, so they wanted to do a scan to be sure there was nothing to worry about (there wasn't, the scan was clear). They also wanted to get the results from blood work to be sure that the diabetes insipidus was fully resolved, that there was nothing along that line to be concerned about. The nurse said that these things needed to be done and then Paul would probably be ready to go; from ENT's perspective, all was fine for him to be discharged. And Paul was definitely ready to get out of the hospital!

Paul called in the later morning, observing that he maybe wasn't coming home; I was able to find out and explain all this, and say that as soon as the doctor had checked him after the scans and lab work his nurse would call me to go over any discharge instructions, and then the younger two and I would come and get him. I felt that trying to deal with downtown parking in the middle of the day would be a hassle, and I wouldn't be able to park our car in the pickup/drop-off area and go up...and it seemed that having him hear the instructions as I did would be good. I couldn't help but chuckle as I caught some of his responses to some of the things that Jason (the nurse) said--typical Paul reactions!

That call came about three in the afternoon, and the children and I piled into the car and drove down to pick him up. No dressings, no drainage thingamajobbie--half his hair was shaved off, so we might do a comparable shave on the other side--he looked good, considering. There's pain, everything is tender, but it all looks good.

For tonight, some particular prayer points: Pray for his physical recovery--this surgery, his sore side, his eye, and most of all his brain's healing so he is able to continue to progress in functional recovery. Pray for the non-physical issues that we are running into--his feelings of worthlessness, his frustration that he can't think as well as he could pre-accident, can't work, can't recall things that seem so simple, the interpersonal relationships that he agonizes over. Pray for the small steps we are taking to heal or revive or improve those, and for the help from various sources that is coming, that we need as we work through these things. Pray for grace as we go through each day. And praise God that he is doing good things, that this will be good. It is good now, though we don't see it all well yet, but it is good because God is God, and God is good.

Tuesday, December 6, 2011 9:46 PM, CST

Well, Paul's surgery today went well, but the whole procedure took some different turns than what was expected. We went into this with a mental framework that looked something like this: Paul (and I) arrive at HCMC at 10:30 this morning to check in and go through pre-op. Surgery was to begin at 12:00 noon and was slated to last four hours. Paul would be in post-op/recovery for an hour or two, then discharged to home, and we'd likely be home around 6:00.

Here's the reality: Paul and I arrived at HCMC to check in at 10:30. He was called back somewhere between 10:45 and 11:00. I was to be called back once he was changed and ready to go up, as I would walk up and eventually go to the surgical waiting room when he went into the OR. Scarcely five minutes after he'd gone back someone came to get me because I was needed to help answer questions as he was prepped. Then I helped him change, and stayed with him once we were upstairs, until he was wheeled into surgery. During this time we talked with Dr. Walsh, who threw me a curveball when he said that his plan included Paul staying in the hospital overnight at least.

This was the point at which reality really began to diverge from expectation. Why was my first inquiry; Dr. Walsh answered that it was more because of Paul's overall medical condition, and we would wait and see how things looked post surgery before making the final call on whether he'd stay or be discharged home. I said that if that was best we'd adjust.

It was somewhat after noon that Paul was ready to go into surgery, and I went off to the surgical waiting room. I'd come equipped with a variety of things to do, as I expected four hours plus of waiting till he was through surgery, into recovery, and ready to go home.

Four o'clock came and went with no news. That didn't bother me; I figured there'd been some delay getting started, so it'd take correspondingly longer. When it got to be past five o'clock, and then onto and past six o'clock I began to fret some. Had I been in the bathroom when Dr. Walsh came to talk to me? Had something happened? (Read "bad news" there.) I tried to reassure myself that if something had gone wrong I'd have heard, and then I did what was far more comforting--I pulled my Bible back out and read, and kept praying.

To set worries to rest, nothing bad had happened. That was simply me wondering and worrying.

Shortly after 6:30 Dr. Walsh came. He gave me the heartening news that the surgery had gone well; he'd inserted the two expanders as he had planned, and everything looked good. Or, as he put it, he was excited by how things had gone with the expander insertion. He told me that Paul has two little incisions, then there are the "balloons" under the skin (which will be filled with fluid to expand the skin), and ports where the additional fluid through which the fluid will be inserted. He didn't really say why it had taken six or so hours; he simply remarked that surgery takes as long as it takes.

Alongside this good news Dr. Walsh told me that during surgery Paul had begun urinating (all right, he said peeing!) a lot. This was unexpected but is not an uncommon event with a patient who's had head trauma and is then having surgery. Sometimes, somehow, anesthesia interacts in such a way as to have this effect, which is called diabetic insipidus (if I'm remembering it rightly, and no, I don't really know exactly what that means). He said that Medicine would be seeing Paul to deal with that, and it definitely meant that he would be staying in the hospital overnight. How long he'll be inpatient is unknown as of now, it depends on how quickly they figure out what caused this and get it corrected. He may be discharged tomorrow, or he may not be.

Whenever he is discharged I may have the reasonability of monitoring and cleaning and caring for a drain that Dr. Walsh put in. That would be in addition to caring for the incisions--which mainly will be applying or seeing Paul apply bacitracin (first three days) or aquaphor (starting day four) every two hours during the day. He will likely have some pain medication, and is also on an antibiotic for some days.

In the immediate future, Paul will see Dr. Walsh on Monday for a post-op follow-up. That will simply be a check of how the incisions and all look. It will be three weeks, at least, Dr. Walsh indicated, before he begins the weekly fluid insertions. And then it's to be a few months before the tissue is expanded enough to allow the next surgery to be scheduled, presuming all goes well with the expansion process.

Fatigue is setting in strongly, so I had best wrap this up. Before I do, though, I wish to plead for your prayers for our family. Things have been rough over the last couple days with the interpersonal and relational conflict that has been occurring. God gave grace and help, but the issues are still very present. My sense is that Satan is working hard to destroy both the family and each person in the family. I see Paul agonizing over relationships that are so strained (so nonexistent in his mind), aching and longing for them to be better, trying so hard to MAKE them better (yet his pushing and forcing are counterproductive). I see each one of us, to varying degrees, becoming so entrenched in his or her own perspective that seeing beyond oneself is all but impossible, especially in the heat of the moment of conflict. I fear things said and done there will fracture our family, and we desperately need the covering of prayer lest Satan succeed in his destructive efforts.

I am walking a fine line here, trying to share enough that you may pray with some knowledge, yet with enough restraint that it's not inappropriate for this public forum. God knows ALL the details and will understand even when you don't know EXACTLY what to pray. We need help to sort these things out and break the patterns we are in--at least two avenues of help for us are opening, but I don't know yet how they will play out, or when. So please pray for God's perfect timing on that, too.

Monday, December 5, 2011 9:17 PM, CST

I'll start tonight with the current details for Paul's surgery tomorrow. It is somewhat changed from the original plan, which had us arriving at 8:00 a.m. Now we are to arrive at 10:30, with a surgery start time of noon (and of course that is subject to change, depending on how long any earlier surgeries run). By God's grace, a friend is able and willing to have our younger two for the whole day, and will also pick me and Paul up at HCMC when he is ready to come home. It will be a long day, as I'll get two packed up and ready to go by eight, then be running oldest to basketball practice, then home again hopefully before the younger two are picked up so I can be sure they take everything they're supposed to. Then it'll be doing any other things I need to before Paul and I head out the door to get to HCMC.

According to what I was told last week, the surgery is expected to last four hours, and then there'll be however long he needs in recovery before he's ready to be discharged home. I'm thankful that a meal's been provided, and that I have a crockpot that will heat it and keep it hot till we get here to eat it!

I praise God that these details have worked out for tomorrow. It is going to be a long, wearying day; I will be waiting at the hospital while he is in surgery. I expect to read, journal, work on embroidery, pray.... Pray with us, please, that all will go well with the surgery and the initial addition of fluid into the expanders. I plan to update sometime tomorrow evening, but I don't know exactly when it will be, since I don't know what time we'll be home, or how much attention Paul will need. Whether the children and I do any school read-alouds is up for grabs, too, it just depends on how the evening shakes out. Pray grace, and patience, and a relaxed attitude for me, that I not try to do more than is needed tomorrow.

It is much harder to open up about the non-medical issues that we are facing these days, the relational and communication matters that are showing up under the stress of these days. I struggle with how much to share, wanting to be honest yet maintaining wise boundaries. Some things are just not suited to sharing in such a public forum!

That said, today I had opportunity to speak at some length with Jen, Paul's occupational therapist. Paul had shared, under some prodding from her, some of what occurred yesterday. It was a rough afternoon, with conflict and emotions, and there was some physical action that resulted in some soreness for Paul. Thankfully one of our pastors came alongside us and helped us move past our sticking point at that time. There was more burbling on this same matter, a somewhat different aspect but the same root, today, but that's another story!

Getting back to Jen, she came down to talk with me after her session with Paul. I had been thinking since yesterday that maybe it would be good to bring someone medical into this, that perhaps it would help to have a psychologist "check in" with him. As we talked Jen voiced approval of that, saying that this is NOT an unusual circumstance and that having a doctor or a psychologist speak into this situation could be helpful. In her opinion this appears to be something called "adjustment disorder", a common condition when someone has suffered a brain injury. She added that she sees that Paul doesn't always carry past conversations in mind; they will go over something like his ability to perform at his job, and he'll get it then, but by the next time he sees her it's gone and they have to go over it again. The psychologist could help with coping strategies, and that would help the whole family. And this would be focused on the medical aspects of Paul's condition following the accident; I am waiting to see what unfolds to further help him and me with the personal and marital communication that is crying for attention, and then what might be needed for the family as a whole, as relations with the children are also stressed.

Please be praying for us through this. Pray for peace, for patience, for trust in God's care and his help as we work these things out. These are hard things any way, and the effect of Paul's accident adds a layer that makes it harder. We need much grace, and I am so thankful that our God is the God of ALL grace.

Friday, December 2, 2011 9:39 PM, CST

It's been three weeks now since Paul came home from the hospital. In that time each day has revealed more and more clearly that we are in a new phase. Yes, there is still physical healing that needs to happen. Paul's brain is continuing to heal, a long, slow process of connections being established or re-established. His eye is another matter that could take up to a year to fully correct itself (possibly with some surgical aid). The ear reconstruction is set to begin on Tuesday. And there are simply aches and pains to endure, some of which are not so much the accident but simply aging.

What I am finding, though, as we have gone through these weeks, is that it's not so much Paul's physical healing at the fore as it is the non-physical. I actually can't draw a firm line between the two; they are intertwined, one does affect the other. Indeed, I find myself asking if his cognitive recovery is physical or mental in nature? Cognition usually implies thinking, yet there is a physiological aspect to it as well. As was said in the care conference before he was discharged, no amount of work to improve function will help if the healing to allow the function hasn't occurred.

Over this last week Paul has seemed to grasp why the doctors had prescribed an anti-depressant and an anti-anxiety medication. He's not thinking that he needs it, and I would agree; he is frustrated that he can't think as well, as clearly, as quickly as he could before the accident, and he is worried about work, about getting back on the job before his employer gets tired of waiting for him to be able to do his job again. Is he depressed? I don't think so. I see him continuing to work, to improve his ability to think and process information, to do things. I do want to make sure that his therapists know that he is no longer taking the anti-anxiety medication, as they could help assess if he's becoming anxious to the point where resuming the medication might be warranted. I would expect a fight if that were suggested! Even so, if that appears to be a growing concern and his recovery and ability to keep making progress in therapy are hampered maybe there'd be something short of medication that could help--simply talking to a pyschologist, perhaps.

I am also seeing that all of us--Paul, our children, and I--are working through personal and interpersonal relations more. Paul's being home full-time is a change, and it's caused shifts in the dynamics of the home. In addition, he is somewhat changed now--not in the core of who he is, I think it's more in the expression of character traits that were already present. He frequently comments that "no one" wants to help him--the children, and even I, tend to be impatient with him, and that's a hurtful thing. Please pray that each one of the children would be given grace to interact, to engage healthily and helpfully with Paul. And pray that Paul would be given grace to respond well, and to reach out to each one with steadfast love. He feels very inept in this, and discouraged that his overtures are not always well received.

Pray for me, too! There are so many aspects of this that come into play--past relational issues between me and Paul as we've tried to work through communication challenges, the stress that I am under as I carry so much responsbility for the family and as I try to balance five people's needs and activities, keep everything going. Even practical things like meal preparations, dealing with household needs like dishes and cleaning and laundry--I'm slipping further and further behind on these things, I feel that "no one" is willing to help me keep up with things (but oh, when someone wants me to do something I'm to jump to do their bidding, accommodate their wishes!). I am physically and emotionally tired, I see myself losing the thread of what I want or need or plan to do quickly.

God is at work and things are slowly coming together to give me and our family help in this time. He is a good God, and I have delighted to see his care over and over in the past four and a half months. That gives me great confidence that he will continue to provide for our needs. I admit, seeing meals provided would be a huge blessing to me; this week has sort of hammered into me that I'm not doing well on that score, and I'm looking up and saying, "God, help with this--I want to serve my family well with meals, but I'm not well prepared, not even really able to think very far ahead and get my act together to have what I need to put a meal together."

Wednesday, November 30, 2011 9:42 PM, CST

Sitting here, getting ready to write, I find myself thinking that the better mindset about updates these days is "little and often". That's a tactic I've heard used for savings, but it seems suited for me now. If I wait till I have a big block of time to write I won't do updates as often, and then I'll be forgetting details, but if I write what I can in whatever short amount of time I have, news will get out, and I will be less likely to overlook details!

So, the main emphasis of this update will be about Monday's ophthalmological appointment, and probably some about next Tuesday's scheduled surgery.

God graciously provided someone who could be here with our younger two while Paul and I went to his therapy Monday morning, and then to his eye appointment. (For anyone who'd heard about it but didn't see it, I didn't actually get it together to have that on the care calendar, so it was only mentioned here.) The nurse (or assistant, or whatever she's called) whom we spoke with first, explaining what the concerns were, eventually said that we'd picked the right day to come in, because Monday "happens" to be the day the strabismus clinic occurs, and that is what Paul has, so she switched us from seeing Dr. Voelker as planned to being seen in the strabismus clinic!

If you haven't already guessed it, strabismus is the turning inward of the eye. It can have different causes; in Paul's case, exactly what caused it is unclear but it seems to be related to impact to the back of his head during the accident, which is now evidencing itself in some nerve paralysis. Some of the nerves that control the movement of the eye pass right along the area that was affected by that impact. Why it showed up now I'm not sure; that was one thing that I couldn't pinpoint, but it seemed to me that his eye hadn't turned inward till about the time he transferred from Bethesda to HCMC/Knapp. Maybe it happened sooner, I honestly don't know.

This diagnosis from Dr. Silbert (I think) was confirmation of what a retired ophthalmologist friend of ours had told us on Sunday, along with what they would do. This condition can clear itself up in time; there is surgery that can be done, but they usually want to wait a number of months to see what happens before taking the step of surgery, because doing surgery too soon can end up overcorrecting the problem and you could have the eye turned outward instead! So we will have periodic checks to monitor how it's going, if it's beginning to correct itself. Surgery wouldn't be considered till after six months, possibly a year.

Dr. Silbert suggested that if Paul is bothered when he reads we could try blocking the left eye by covering the left lens of his glasses with Scotch gift wrap (aka magic) tape. It wouldn't be as visible since the tape becomes invisible when pressed into place, yet it would block images reaching his retina. As of now, he's not bothered so this is simply in reserve if it's needed.

That is the scoop on the eye issues right now. Please keep praying for healing on this, and for patience for Paul (on this and on most everything else with his recovery--it all takes TIME).

I am working on and seeing things line up for Tuesday's surgery. Some of the details won't be confirmed till Monday, like exactly what time Paul is to arrive. As of right now that is 8:00 a.m., but I was told today that that might be earlier, and I'll find out on Monday. That's a bit troubling for me, as I do have to be sure that things are worked out for the younger two, and that the oldest knows what's going on.

I was surprised to learn that this surgery is marked out to be four hours in surgery--not even counting the pre-op time or the recovery time. My reaction was, "It will take that long to insert the expanders? Wow." To me it doesn't seem that should take so long, but that's what Dr. Walsh is indicating, and he's done plenty of this, so he would know.

Please pray that all the details will work out, from care for our children to getting there and home, to the surgery going smoothly, to the tending to any/all practical matters.

The last thing I want to touch on tonight is another prayer request: Please pray for Paul, and for all of us, to manage relational issues well. There are tensions in various relationships within the family--frequently revolving around communication--and those tensions do tend to erupt. Pray for grace, and gentleness, and wisdom to know when to press, how hard to press, and when to STOP. Paul tends to keep pushing, even when it's become adversarial, and that's when eruptions tend to occur. That brings tension into the whole household, and it's hard.

Saturday, November 26, 2011 9:41 PM, CST

I find myself debating tonight what analogy fits our home/family emotional climate best: pendulum swings or eruptions? I'd like to say pendulum swings, since that doesn't sound as nasty as eruptions, but I am drawn toward that as more accurate and honest.

My guess is that the 24/7 nature of our lives is a major factor in the increase of eruptions--mostly from me when I feel too pressed upon--here. Sadly, neither Paul nor I are very good at dialing down when we feel attacked; we spiral up and quickly get to yelling, which leaves much frustration in its wake, and further has the effect of upsetting our children. Sometimes that--seeing the younger two retreat to one or the other's room--is the best slap in the face for me to try to calm down. It'd be easy to pin most of the blame on Paul for persisting when I've already said, "Let me walk away for a few minutes", but honestly, I usually yell it, which is like throwing gas on a fire.

Getting out for a few hours BY MYSELF today was really good. Granted, I was doing our payday errand run, so it wasn't a "get out and unwind" excursion, but it was ALONE. Oldest isn't thrilled about the suggestion that I do most of these errand runs on my own, leaving the rest of them home. He's also not thrilled by the idea that Paul would come with us (a distinct possibility once the minivan is functioning again, whenever that happens); he'd rather that someone be here to hang out with Paul, and maybe Emily and Samuel, while he and I go out on the errand run. Not-a gonna happen like-a that, mister.

All right, getting my silliness back under control...my decision about the errand runs is that I will do them myself until such time as our minivan is functioning again. Then more than likely it will be either we all go, including Paul, or I continue to go alone. If there is something that requires a particular person to be present, such as buying clothes, my inclination is to find another time to do that as a separate errand, and then depending on who and when, it'll again be a family affair. And of course this plan is likely to change when Paul reaches the point where he doesn't require the 24/7 supervision.

In my mind, to provide some sort of framework for how long this level of supervision will be necessary, I've settled that until Paul sees Dr. Roehr in January 24/7 is in place. It may continue after that, or it may be lifted sooner, if his therapists relay progress reports that suggest it's not needed. It simply makes life easier for me to expect it to be this way and not be on edge wondering when it'll change. It's that same mindset that moves me to say to Paul, "Keep taking the Trazadone (sleeping pill) until I can talk to Dr. Roehr's clinic nurse and suggest something, see what she says." If it'd be up to him, Paul would've dropped both that and the anti-anxiety medication he's been taking; he's yielded to me as "the boss" right now, yet I see him counting the days to be able to stop the Celexa...tomorrow is the last day of the two weeks it was ordered for him, with another two weeks' refill available if he seems to become more anxious once he's not taking it. I will be asking the therapists to help monitor that, but my guess is that he'll argue against resuming it, and maybe he's at a point where he could manage to work through any anxious concerns without resorting to medication. And this is presuming that he does become more anxious once he's off this medication. Please pray that he would do well without the Celexa, and pray that I will get hold of someone to discuss my idea for the Trazadone.

Also pray that I would know who to talk to, find out who to talk to, about various physical concerns Paul has. His misaligned eye is a concern to him, and the dryness of his left eye bugs him. He is scheduled for an opthamalogical appointment on Monday; it's a follow-up, but I want to ask about this misalignment, what could be done to correct that, and inquire about going to a neuro-opthamalogist. His right knee bothers; this was touched on in October as something that does happen as a person ages and there is something that might be done eventually. Now he's been mentioning that he has some chest pain; he mentioned this to Dr. Riley, our family physician, on Tuesday during his pre-op physical, and Dr. Riley suggested that it could be scarring from the pulmonary bruising he'd suffered in the accident. His EKG, part of the pre-op physical, was normal, so it's another for me to make some inquiries about, and pray that God would heal.

I hope to have times when having someone "hanging out" with Paul (and quite likely our younger two as well), or times when someone to take or watch Emily and Samuel, updated on the care calendar soon. I know meal opportunities are there, and I really wish to communicate needs and details as quickly as possible, that God may provide. Pray for me to recognize needs and share them, hard though it sometimes is to open up and ask for help. 

Wednesday, November 23, 2011 10:29 PM, CST

Today, after a week of agitating about it, I finally "got it together" to drive Paul to the downtown post office. Last week during a library visit Paul learned that he had a book out, which I had declared lost, since I couldn't find it around home. He was obsessing about the fee, not fully understanding that it was a replacement fee, it wouldn't keep going up. He believed he'd told me that the librarian had told him to take care of it THAT DAY, but I only heard him say it needed to be found and returned or he'd have to pay $30. Over the last couple days this became a point of conflict which ended in the two of us yelling at each other. I am glad that we finally restored peace, and there's hope that both of us will handle such moments better (or at least differently) in future.

Anyway, by God's grace today was not as busy a day as the last two have been...which was a big factor in why I was unwilling to run in one more direction. So we went, and I knew that we would need to spend time talking with various postal employees, who would all be surprised and glad to see Paul. I lost count of how many people we talked to--I think it was eight or ten. It was a blessing for me to see the pleasure each one of them had in seeing him, a blessing to hear them each remark on how good Paul looked in light of the seriousness of the accident, and a blessing to hear them speak to his desire to be back to work, giving encouragement for him to take the time to fully recover, to be ready and able to do the job again, to not rush it. I believe these things were likewise a blessing to Paul, too!

Just to finish the library book story: On our way home we stopped at the library and returned the book, and Paul was surprised that the amount he had to pay ended up six dollars--the overdue fine instead of the replacement fee! He finally understood what I had been trying to explain for a couple days about that charge!

Now for "more from me" remarks. As I have walked through this past week and a half since Paul came home--has it really only been twelve days?--I have begun to see some of what I will need to help me make it through this phase of our journey. As I said before, hearing that Paul would need 24/7 supervision now, till further notice, didn't give me a full understanding of what that would be like. That came as I lived it. Over this past weekend, in the course of different conversations, one way for people to help shone thorugh. I hope that I will be able to express this clearly!

I am at a point where I am having to manage so much that it is beyond me to take on the burden of finding help when I need it. I can and do make decisions when I am called on to do so; what is beyond me is finding out the options, making myriad phone calls to find one person to help with something, getting information to weigh as I make a decision. What I desperately need is to be able to share what I am facing--figuring out what to do about our minivan, saying I need someone to be here with Paul and/or the children (or take the children) while I am out either to run errands, or go somewhere for a social activity, or to just have a few hours off, to give a few examples--here, and on the care calendar, and have someone prompted by God say, "Hey, I can help with that." and let me know. From there I am able to call and coordinate, firm up the details of time or whatever...because then I know who to call, who to hand the matter to (as I have been able to do about our vehicle issue, thank God). I can do a phone call, or email back and forth; I simply need a starting point.

I hope that this makes sense. Someone said to me today that people want to help, but I need to let them know what will help. My prayer is that I will do my part to let you know what I, and Paul, and our family, need, then rest it with God to prompt the right person to step forward at just the right time.

Monday, November 21, 2011 9:23 PM, CST

These days I feel that I am playing catch-up here. It has not been as easy to collect my thoughts and write as it was prior to Paul's coming home. For one thing, I have to share the computer now! Even more than that, though, is the simple reality that the relentless pressure of parenting, homeschooling, keeping the home functioning (cooking, cleaning, laundry, shopping...), supervising Paul and managing a myriad of details--therapy sessions, other appointments, various activities for the different members of the family, figuring out what the needs we have are to I can share them and see God work to provide for us--has me so mentally and emotionally weary, to say nothing of physical weariness, that it's hard to share coherently and honestly.

So let me start tonight with how Paul is doing. As I have indicated in other entries, his recovery is much slower than he had hoped it would be. Last week he grasped exactly when the accident had occurred; he thought he'd been in the hospital only a few weeks, so it was a shock to learn that it'd been nearly three MONTHS since it happened.

He has observed repeatedly that it seems he's more tired now, having a harder time moving and such, than he was in the hospital. He attributes it to the medication that he continues to take, which he is reluctant to do (thus far he has complied, but every day with some disgruntlement about it). He argues that once the antidepressant was stopped in hospital his mobility improved rapidly, and he holds the opinion that he doesn't need the anti-anxiety medication. He may be right, but the prescription was to take it for 15 days and then see how he does without it. He's counting the days on that! He'd also like to be rid of the sleeping pill; I will try to get through to someone, hopefully tomorrow, and see if that could be attempted.

In contrast, I believe that a large part of his increased weariness can be attributed to the changed level of stress and stimulation Paul is experiencing now at home. Yes, he was doing therapy at Knapp, he would have three or four sessions a day, usually, and they were intense. But once the therapy was done he would have relative quiet. He could retreat to his room and have a nap, not have to be so constantly interacting with people. Here at home there is simply a constancy of commotion or stimulation because there's me, and the children, and meals and cleanup and reading and all sorts of things. He does retreat and take naps, but it's not as quiet as it was in the hospital (and I can imagine some of you saying, "It's not all that quiet and restful in the hospital!"). He doesn't believe that that is a large factor, so we'll see. Perhaps if his decreased mobility and energy continue once he stops the anti-anxiety medication he'll put some credence in what I have suggested!

I realized as I have worked through this I need to figure something out: Who do I contact when I have a question about this or that? It seems that is a piece that wasn't stated in the discharge papers. While he was in the hospital I could simply raise the questions with the nurse, who would take the questions to the appropriate person and come back to me with information or an answer. But now there is no nurse to call! Most likely I will begin with our outpatient social worker and see where to go from there. I admit, I am still somewhat befuddled by who does what and how the different specialties work together. We've one doctor for the ear reconstruction, there's another for some of the eye issues, a primary doctor because this was a TBI (neurosurgery). At some point we will probably consult a neuro-opthamalogist for other of the eye issues; that may be discussed next week during an ophthalmology follow-up.

Aside, that reminds me, it would lighten the load if someone could watch Emily and Samuel next Monday. I don't have the times handy; Paul will do therapy in the morning and then would have the eye appointment at 1:00 or 1:30. I'd rather not have to bring them along and have them sitting in the waiting room alone while I am in with Paul.

Back to how Paul is doing: at present, and definitely till the end of the year, Paul has occupational therapy (OT) and speech therapy (ST) as an outpatient. I was mistaken when I said that his total daily therapy was an hour; normally OT is an hour and ST is half an hour. Some days it's not possible to get an hour for OT, just because of the therapist's schedule; those days OT is half an hour. These are scheduled through to the end of December. It's possible that we'll have to cancel one or both days of therapy when he has the expander insertion surgery, depending on how he is doing. As with so much, it's easier to cancel than to squeeze an appointment in.

He feels that his brain is working very slowly, and he is frustrated by that, by his inability to be back to work, to be the financial provider for the family. Lindsay, the speech therapist, reminded him today that one goal is to help him find strategies that work for him to solve problems, and she encouraged him to ask for help when he's tried to solve something and is stuck. He'd refused to let me give him any pointers for a problem he was working on, because he didn't know if he should. It's fine to have a pointer, I just can't solve it for him!

This is a fair recap of where Paul is, where we are, physically and cognitively. It's slow, but it's something that takes time. I reminded Paul the other day of a comment from the last care conference: It won't matter how hard you work to improve function if the physiological and neurological healing haven't taken place. Pray that he would respect that reality, that he'd work and do his best, and give himself a break when he can't progress as fast he he'd like. It could be that the healing is not to the point that the function can be improved.

Shifting now to more intangible things, like personal and interpersonal and relational issues: Oh, boy, where do I go here? It is a challenge to weave Paul back into the day-to-day fabric of our lives. It's different, even, than before his accident, as now he is HERE 24/7. He wants to be a help, wants to step back into the parental role, and I am fumbling to figure out how to manage. He's much more of a "crack down on it NOW and see immediate results", and "deal with it (whatever it is) now". More nights than I can count has supper become a time of turmoil as Paul hammers at our children's manners, or his perception of a negative attitude. I am much more of the bent to deal with issues in private, alone, not in front of everyone, so we've had repeated explosions around these things. I think the medical folks would see it as perseveracating; I refer to it as a dog worrying a bone. Being heavy-handed is another description that has come to mind as I watch this. I am torn; how much do I say, WHAT do I say, to help him gentle down so his reproofs are received in a better spirit? It affects me, too, as he tends to hammer at me as well, and we spiral quickly down into yelling and hurt feelings.

I haven't thought this out well, the last few days have brought home to me that it's important, if not vital, that one thing I get some structure around is respite for me. What I'd like is to have a few people--men, actually--who are available (and sometimes this needs to be during the day, which rules a lot of men out, I know) to come and be here with Paul and possibly our younger two children, to visit with him while I get out for a few hours by myself. I spoke before of the reality that I am the linchpin for our family now, and if I fail the whole family will be affected. The short times alone I have are helpful, but the need for occasional afternoons or evenings out when I don't have to deal with ANYTHING is starting to press more and more on me.

For tonight, this is all I have burning. Please continue to pray. Pray for Paul's continued physical recovery, for his eye to be healed and straightened, for other aches and pains to ease. Pray for the upcoming surgery, that it would go well and that the process of expanding the skin would be without incident. Pray for the various needs I've mentioned both explicitly and implicitly here, and the needs I don't even know about yet, that God would supply those needs. It has been wonderful to see him at work on these things thus far.

One last note: I am not opposed to Paul knowing many of the details I include here. However, because this is a place where I "sound off" on some things, a safe place for me to let some of the emotions out--some things that would be stressful for him to have to take in--I have requested that he wait to read this in its entirety once this chapter of our journey comes to a close. May I therefore request that as you speak with Paul you are cautious especially about emotional details from these updates that you share?

Thursday, November 17, 2011 10:25 PM, CST

It has been nearly a week since Paul was discharged from Knapp, and it has been much more stressful than I had expected or been prepared for. Though I had heard things like "24/7 supervision" I really couldn't know what that would be like until I experienced it. During the last care conference we had before Paul's discharge I had likened his imminent homecoming to how it had felt to bring four-day-old Emily home from the hospital. I didn't really have any frame of reference for what life at home with a new baby would be like, and the thought of having to do it all myself was intimidating. There wouldn't be any nurses to back me up or assure me "this" was normal. Yet it was something that we just had to do, and have faith that it would be manageable. That was what I had to hold to with this, too.

These five or six days have been stressful for all of us in different ways. I haven't really tried to discern just how each of the children are feeling about things. Perhaps it's their ages, but it appears that the boys are the least overtly impacted by Paul's being home. It seems to be a bit harder for Emily; her routine and normal activities have been more disrupted by Paul's activities. Some of that is simply time management, and once we figure out a good working schedule I trust some of the tension will ease.

As you may have guessed (or actually heard me say), this has been much more challenging for me than I could have anticipated. Prior to his discharge there'd been a suggestion that he would be at a point where he could be left unsupervised for short periods of time; that was NOT the case when the discharge plan was worked out. That has meant Paul either must come with us to various activities or have someone here as a companion while I am out. He cannot be left in charge of the children. He cannot drive. Though he is capable of reading his meds chart and of doing things in the kitchen and around the house (unless it involves power tools) I must supervise, must be around, must rein him in. That's a helpful way to view it: I need to help him slow down, take time, not rush and rush and rush to recover and be back to doing what he could do before the accident.

This reality has been hard for Paul to swallow. The nurse who went over his discharge papers with me made it clear and stressed that for the time being (and how long that time will be is unknown) I am the boss. I will seek his input but the final decision rests with me, and he needs to listen to me and let me be the boss. It's a hard position for me, too, and a major thing we are working through. To his credit, he hasn't balked badly at things, which makes it a bit easier. Each day, I believe, he is realizing more and more fully that recovery is going to take a lot longer than he expects or wishes. He's also realized and has told me that he appreciates that I know and understand what is happening and am able and willing to explain it clearly for him to grasp over and over, since he often doesn't get it all the first time.

There is a lot more I feel I would like to say about this, but I am overwhelmed with all that I have to manage these days. For tonight I simply will ask for prayer--pray that I would manage well, find balance for each one of us and especially for myself. I am one who needs a measure of alone time, and that is very hard to come by these days. The load is heavy, but is not more than I can bear, and God is very faithful. He's blessed again and again, which gives me confidence that he will continue so to do. Pray that I would ask him for help, even though many times I don't know what will help the most. I am slowly starting to see what our needs are for this phase of our journey, but I am still fumbling to discern what will be most helpful so I can let the needs be known.

Friday, November 11, 2011 9:46 PM, CST

Today we embarked on the new phase of this marathon: Paul was discharged from Knapp and is home. I've already bumped into a little glitch that means I will have to make a trip to Walgreens tomorrow to pick up some over-the-counter medications he needs by doctor's orders. That wasn't something I had expected to have to do; my list of things to do tomorrow has been growing since I didn't get some things that are normally done on Friday attended to, what with one child dillydallying her way through schoolwork, and picking up Paul's prescriptions, and then picking up Paul himself...and it took some time to go over all the discharge paperwork...and now we will be figuring out life's new rhythm! Sharing the office and computer will be one--I've been spoiled these three months not having to take turns!

Jumping back now: The last two updates did lay out Thursday's overnight pass and Friday's discharge. I've since realized that I left out a lot of how I was feeling as I faced this major shift, and I want to share it briefly. Bottom line, by yesterday afternoon, before I went to pick Paul up for the overnight pass, I was starting to come a little unglued. I described it as a storm cloud that was looming, growing larger every day as I approached it, and I dreaded stepping into the cloud even as I knew that I really didn't have a choice. Thursday evening would comeand I would have to step forward, and then Friday would be another step into what was then a terrifying unknown.

Another way to put it is that as the week progressed I felt more and more overwhelmed, more and more that things were spiraling out of control, and that I was being handed this, and this, and this, and it didn't matter I was floundering, sinking under this growing weight. It was so much, and it was taking a toll. Monday had had me reeling; God's grace gave me a good evening with a friend to talk through the day and the feelings, so I settled and could face the reality of Paul coming home after the overnight pass. But then, as I did more talking with Barb and with Debbie (Paul's main day nurse), and had to coordinate Paul's OT and SpT (occupational therapy and speech therapy respectively) appointments for the next two weeks, and learned that my idea that his therapy sessions could NOT be set to coincide with some of the times I was already out and about...each one of those "blows" to how it seemed it would be more manageable for me heightened the apprehension I was feeling more and more each day. By Thursday I was feeling that I was only just hanging on, and thinking that I would have to button up all these doubts and anxieties by the time I got to Knapp to pick Paul up, because he was SO looking forward to being home, SO excited to be on the verge of getting out of the hospital. To give him his due, he did recognize that I was going to be carrying the bigger burden having him home, and that did help give me courage to carry on.

Thankfully, as I wrestled through these days I was able to be honest about feeling that they (the medical folks) were not caring how I was feeling with this bombardment of STUFF as we rapidly approached Paul's discharge from the hospital. Little bits of encouragement like he wouldn't need a bath chair, he was able to administer his own eye drops (with supervision), and was continuing to make good progress...he wouldn't need physical therapy as an outpatient...and friends who were stepping up to handle practical concerns, get information for me, do some advocating on my behalf because I was simply at a point where I didn't know where to go, what to ask even, who to talk to, what Paul or I or the children would need. I really felt that I was coming unglued, and I needed to hold together. At this point in our family's life, under these circumstances, I am the linchpin and if I fall apart it'll be quite a mess!

Even today I have swung back and forth between feeling that Barb and Debbie and others would be helpful, and feeling that I was being handed all these pieces to manage when I am lost as to who's who, who's doing what, why this and why that. Those were mostly feelings; time relieved most of them as I could see reality and knew that they were helping, and were doing what they could to make things easier for me at a crazy time.

So, as I sit here and listen to Paul snoring behind me I am grateful that the storm cloud is not as dark and overwhelming now that I am in it as it was yesterday anticipating it. I have purposely kept this weekend as free from outside activities as I possibly can--our usual errand run is suspended (oldest is not happy and wishes to know when we will go, and I don't have an answer to that yet). I had the growing conviction that it would be in everyone's best interest--mostly mine!--to have a couple days where we just hunker down at home and see how things begin to shape. I have come to some decisions about what I think will work best for us, and there are pieces in the works that will come together, I trust, in the coming days. For now there are enough unknowns along with any knowns that I can't quite see what our needs will be.

This is about all my weary brain can manage to share tonight. Please continue to pray for us, for all the pieces to come together just right. I can't see how God will put them together, I simply rest in the confidence that he will, and at just the right time. As I become clearer about the demands on me (supervisory role) and what we will need to manage all this I will update further and try to give more specific details to you know how to pray and where to help.

Tuesday, November 8, 2011 4:34 PM, CST

We've made it official: Paul will have his overnight pass Thursday, he'll be back at Knapp for the day on Friday (to do his therapy sessions as an inpatient), and barring any major disasters with the overnight he will be discharged Friday afternoon, after his therapies are done. He's thrilled; I'm not quite ready to do a happy dance yet...I am excited that he'll be home, it'll relieve the pressure of hospital visits, but the massive load of coordination that is going to land even more heavily on my shoulders is daunting. I have to balance his desire to be a partner again with reality and what he CAN do, and find gentle ways to tell him that certain things have to be. He wants to just dive right in, and I'm more "Let's see how things go before you charge ahead." I think I'll be the voice of reason and restraint, helping him to conserve his strength and energy.

I am relieved that he is tolerant of the "someone here with you" need. His first reaction was how expensive that would be, but when I explained that it would more likely be a friend hanging out with him he was positive about the notion. As a result, I am praying that God will work this out for us, that it would be sweet for both Paul and whoever companions with him on those occasions when I have to be out with the children (or those times when I am out for a respite break). Lord willing, as he continues to recover he will reach the point where he can be on his own for up to two hours, which will ease the strain of supervision.

As of now, I will pick him up Thursday evening, sometime between 6:30 and 7:00. He has therapy till 3:00, and I felt that trying to negotiate the heavy traffic downtown at that time of day would be too much, so I chose a bit later. I have to find out what time he needs to be back Friday morning, and then coordiante his discharge. I'd prefer to wait till that 6:30-7:00 time if possible, to ease the traffic issues, but we'll see what Knapp's policy is.

Please pray that all would work out smoothly with the overnight, the inpatient therapies on Friday, and his discharge. Pray that his outpatient therapy schedule will be settled. I had hoped that it could be teamed up with times that I am already out (Tuesdays and Thursdays), but Knapp staff's opinion is that Paul is not yet ready to be "alone" waiting for me to come pick him up. They're concerned that he'd wander away, so for the immediate future I (and the children) will need to be on site while he's in therapy. On the positive side, Barb said he might only have OT and speech therapy, which would be an hour total; if he needs PT that'd add a half hour. I asked and she said that there shouldbe be any problem with me and the children going to the dining area of Knapp while Paul has his sessions; we would bring their school materials and tackle that while we wait. Barb will let me know what times work out once she talks to the scheduler. She'll know by then if he needs PT as well, and if it'll be two or three times a week.

Pray for grace for all of us, particularly the children, as we navigate the changes to daily living that Paul's being home will bring. There will be changes and tensions with him present, and we all need to look beyond our own wishes. I have decided that we will NOT do our usual errand run this Saturday, and that's not going to please the oldest. Pray extra grace for him, and gentleness and firmness for me.

And please join me in praying God's provision for all the needs we have coming up, from people to hang out with Paul when needed to meals, to help with the children, and our minivan, and transportation and coordination. I will be learning my way round HCMC now as we won't have hospital transport to ferry Paul from Knapp to the various clinics, so I have to know where to go, and I am inclined to utlitize the light rail to get to and from the hospital rather than driving and parking. So many things to see work out!

Monday, November 7, 2011 9:41 PM, CST

A few hours, some time to let things settle in my brain, and a quieting time talking with a friend--I am much calmer about the overnight pass and the next day discharge plan. I'm still letting it rest for the night; tomorrow, unless something comes into my thinking that directs me in another direction, I will most likely call Knapp and say go ahead with an overnight pass for Thursday, with a probable discharge to home Friday after his therapy sessions are done.

As I indicated before, this feels huge. One of the major issues is what will I do about the errand run that we (the children and I) had been expecting to have? Pre-accident Paul would be gone to work before we'd leave on our payday errand run. Up till now, post-accident, we've mostly headed out at about the same time. But now what will this look like? In my opinion, squeezing all five of us into the car and being in and out of the vehicle, in and out of stores, for the better part of Saturday afternoon/early evening, and what about our purchases, seems burdensome. Would Paul be able to endure four to six hours of this? Leaving him home by himself for that long--no can do. Leaving the younger two home with him (oldest's suggestion) is also "no can do." As of this minute I don't have a solution to this dilemma, and I can't think too much on it.

Facing this probable scenario has brought strongly to the fore the need to lay open what our family's needs will include during this new phase of our marathon. To this point a major need has been help with our children at the times I have to be at an appointment with Paul (or occasionally for myself). That need remains (and it's a concern for next Monday as I need to accompany Paul to an appointment at the dental clinic--if you can help, please check into it on the care calendar), but help with Paul when I need to be out with the children is joining in, along with occasional times when Paul AND the children need someone to fill in for me, to allow me occasional respites. Let me try to unfold what this means, what it looks like from my vantage point.

Paul is relatively independent as concerns his self-care. He's mobile--he can manage stairs, can move around the house. He is able to do things like help clear the table (did this yesterday) and wants to be helpful, wants to be a blessing to me and the children, not a burden. What he needs mostly is someone to be here in a supervisor-like capacity--not necessarily doing things for him, but being present to aid him when he needs it, to remind him to slow down, to give him a cue that will help him figure out what to do. You could say it's more of being a companion, enjoying each other's company for an hour or two (or more, perhaps, depending on the circumstance).

When it comes to the children-Paul combination...when I am blessed to have several hours to simply go out and not have to be mom, teacher, caregiver and whatever else falls into my job description...Paul wants very much to be father, to tend to our children. Blessedly, they are not tiny ones, so they are able to do quite a lot for themselves. Here again another person's presence would be mainly to help Paul when he needs it, to encourage and support him in being dad to his children, not stepping in and doing the job for him.

What I want to communicate here is my desire to have a few people, friends, who could stand ready to be here with Paul, or with Paul and the children, when I need be out. My hope is that I will be able to coordinate some things so my or the children's activities occur when he has outpatient therapy sessions, but there are simply going to be times when that won't work, and it will lighten my load to know who I could call, perhaps on short notice, for help. It's hard to be vulnerable and say this, and I am fighting the whisper that says "you want to get other people to be the caregivers so you can run away and play."

I'd like to close this second update for today with bits of positive news. All this has been and is weighty. It is settling and I am confident that God will give all the grace I need, so I am ready now to simply step back, to prayerfully hand it over to him (again!), and see how he continues to calm me and how he works it all out. The little positives: During OT today Paul proved that he will be able to safely step into and out of the tub, and he was able to stand to shower. As a result Theresa said that all he'll need is a non-skid mat in the tub--a sweet surprise, I was planning to purchase a small shower seat/bench for his use. During the TR session Paul spoke of being able to get military retirement in four years, conveying that he's thinking about ways he will be able to provide for our family (in addition to getting back to work at the post office, Lord willing). And he touched on his recognition of and his desire to spend more time talking and listening to me. Both those meant a lot to me, assuring me that he is doing what he can to step up to the plate and be the provider and protector he's intended to be. And I am encouraged that together he and I will find the way he can be this now though he is somewhat limited in what he can do.

Monday, November 7, 2011 4:56 PM, CST

Pendulum swings

Today has been a day of swinging back and forth between feeling calm and ready to face the next step, and feeling overwhelmed and rushed and very unready for what is coming. In actuality, this swing has happened within the past two hours, so I am still reacting more emotionally as I trace over this day's events.

This morning Paul was scheduled to go to ENT for ear impressions to be made; this was the second step toward the ear reconstructive surgery. His appointment was at 11:00, but they'd become backed up, so we hung out in his room till nearly noon, when someone came to ferry Paul (with me following) over to ENT. Dr. Walsh did impressions of both ears--his right ear so as he works he has a model to follow, and his left to know what is there to work with for planning purposes. I was pressed into service to hold the forms in place while Dr. Walsh used the jelly-like substance and the plaster to create reverse molds; he then poured stone into these to get the actual molds.

During this appointment I asked Dr. Walsh to review some of the things he'd told us last week, as I had missed some details and wanted to be sure that I had them as clear as possible. In particular I wanted to be sure I understood what would happen if the complication of skin splitting or tearing happened. He put it as we'd have to make a decision: do we remove the expander(s), let it heal, and reinsert the expander(s) to try again, or do we have enough skin to go ahead with the reconstructive surgery? Our prayer will be that this WON'T happen, that all will go smoothly with the expansion, no tearing, and we'll get to surgery #2 without issues.

Dr. Walsh also told me that the expanders he'd ordered had arrived; he will have a look at them tomorrow and if they're right we've no obstacles from his side to surgery #1 (insert the expanders) on December 6th. There are other things to work out, and I've inquiries about those going already. One is a pre-op physical, and the hope is that we'd be able to have that taken care of before Paul is discharged. We'll see what Debbie finds out about that during rounds tomorrow, when she will bring it and a couple other questions up.

The biggest swing has to do with Pau's being discharged, and it's where I really felt I am being rushed, that fitting his coming home from the hospital into our lives to be smooth for all of us is being tossed by the wayside. Rationally I know and respect that if Paul is medically ready to be home their goal is to get him there, but I had had the sense that I would have more say about his overnight pass and his discharge date. I didn't realize that there would be more constraints to when it would be, how close together, and that I'd have much less say in what would work. Again, rationally I realize that my convenience isn't their first concern, but it did throw me, and I left that conversation feeling overwhelmed. Add that just as I was heading for the elevator to leave an hour later than I had expected (due to the delay gitting into ENT) Paul and Mikell, one of the therapuetic therapists, snagged me; they wanted me to join them for at least part of the session to discuss with both of us some of the relatinship issues that can arise following a TBI. In the course of that some considerations came up about work that further threw me, so I left feeling overwhelmed and irritated, even afraid.

Pray that I will be calmed about this. Tentatively, Paul will come home on an overnight pass Thursday; I'd bring him back to Knapp Friday morning for another day of inpatient therapy, and if all went well with the overnight HE WOULD BE DISCHARGED FRIDAY AFTERNOON! That is good news, but it slaps me with logistical issues and tensions.

I am out of time for the moment, so I will close with that and come back later this evening (hopefully) to speak more to this.

Sunday, November 6, 2011 8:31 PM, CST

Many thanks for all your prayers for us today! Things went smoothly with Paul's time out, both at church and at home. I heard from a couple people that it was wonderful to see him at church, walking around, doing so well. I didn't hear a lot of details about how his time in Sunday school had gone, so I'm presuming it was positive. He did mention how amazed he is to see and hear how loved he is, how glad people are to see his progress, how wonderful it is that so many are caring, visiting, and the like. He feels unworthy, that he's not been nearly as good a friend and Christian as others are showing themselves to be.

I could only smile at Paul's eagerness to eat "good" food--Emily and Samuel had asked (pleaded) for a snack of Fritos, and Paul joined in pleading for "just one". He explained that at first he couldn't chew much at all, but now he's able to chew some on one side. He did manage the Frito, and later I saw him grabbing a few kernels of popcorn. Generally his diet is softer-textured foods; he really liked the soup we had for lunch (I am sure that half the attraction was simply that it was home cooking!). He's hoping that in a couple weeks he'll be up to eating pizza again, one of his favorites (guess what we frequently had for Sunday supper, which was his meal to plan and prepare before his accident?).

Seeing how well this went has made the prospect of an overnight pass less intimidating. It still feels like a heavy weight, as the burden of supervising will fall on me. It would be from sometime after his therapy sessions for the day are done, and then he would need to be back at Knapp in the morning before his first therapy session the next day. I think the more intimidating piece there is having to oversee his medications. He'd had a cue sheet and he will have been more responsible, under their eye, to take his meds at the appropriate times, but the responsibility for oversight will land on me.

I think another reason the overnight pass, and his approaching discharge (again, no date for that yet) feels heavy is that I am also managing things with the children, helping them handle Paul's changed behaviors. Paul is still functioning on a more emotional level, which is sometimes hard for them to deal with. I was proud of all three and how they coped with the changes that are present now. As he continues to recover some of these things may fade; what differences will be permanent is yet to be discerned. Still, there's the tension of how much do I manage him, his engaging with the children, talking about what he's thinking, and how much do I stay out of it and allow all of them to figure out how to connect, how to communicate with each other?

Paul is eager to be as much of a help as possible. That will be an ongoing balance, giving him freedom and opportunity to be helpful, in whatever ways he can--taking care of little things and bigger things, participating in activities, whatever. For me it will be a challenge to help him be the provider he wants to be when I have to do so much of the actual "dirty work" because he's not able to handle it yet. I want to honor him in how I carry the responsibility for him.

May I say that I covet your prayers for us this week? It's shaping up to be a busy week--tomorrow Paul has another session with ENT (doing the ear impressions), and I'll be accompanying him again. That will take a couple hours. Thursday I have an appointment of my own--and these both mean getting Emily's and Samuel's schoolwork organized for them to do without my active involvement (someone else oversees their working--and I'm thankful for that!). Knowing that we're looking to do an overnight pass, and possibly having a care conference later in the week...and needing to find out about disability options and such through USPS and the union...yep, it's going to be a little more hectic. Pray for me to manage it well, to relax and trust. I know that God will give more than enough grace.

Saturday, November 5, 2011 9:37 PM, CDT

As is clear, I didn't get back yesterday to give a fuller synopsis of the care conference. Today's been a bit of a busy day just doing the normal stuff and making sure that things are organized for Paul's afternoon out at home. By God's grace, a friend is helping out by picking Paul up from Knapp around 11:30 so he will have a chance to be in his Sunday school class for a half hour or so. Then he'll be accompanied to the library to meet me and the children to come home. He's eager to be in the home, eager to help with anything he can help with, so we'll see what happens. I want to keep it low-key on activities, especially since being out of the hospital and with people, both at church and here at home, with the different activity levels, will bring its own stress for him. They want him to be back by 8:00 pm; my idea is around about 6:00. It will depend some how the afternoon unfolds.

Now, for the care conference details: In therapeutic recreation they are working on patient education, focusing on general attention and concentration. There is a need to repeat material, and they're trying to balance working on that and doing fun things. They also noted that Paul's reality orientation has improved.

Physical therapy likewise noted improvement (that was an across the board observation). Paul's mobility has improved since he was weaned off an antidepressant (which had been used to ease anxiety, not because he was deemed depressed). For longer distances and for outside he needs supervision. He needs cues for pathfinding, so they'll keep working on that and on his gait pattern and endurance. He is walking better--his stride is longer, more natural, he's more relaxed, so he doesn't get as tired, and he is initiating rest breaks when he needs them. His balance has improved so he is now at low risk for falling!

Speech therapy: Paul's speech is organized, he knows the right words most of the time and is able to communicate his needs. He catches most of his errors himself; even if he can't get quite the right word he knows that what he's said isn't exactly what he wants. His chewing and swallowing is becoming more efficient, though he remains on a softer diet for now. He's still distractable; his mind wanders, he starts thinking on other things, and his memory, attention, and thinking skills need more work. One focus for coming weeks will be strategies for memory.

Neuropsychology described Paul's position as "remembering with cues and recognition". He does well with logic and planning in a quiet environment with no distractions, he's very accurate with problem solving. Multiple choice is harder for him when he doesn't have cues.

Occupational therapy is letting Paul handle his own morning care--dressing, washing, calling for breakfast--with written cues. He was in the kitchen making scrambled eggs the other day--he knew most of the steps but still needed a few cues. They all laughed a little at my raised brows when I heard that (I laughed with them). He cannot cook by himself yet, but this is good! They'll begin exercising his right shoulder more, and they are watching the muscles of his left eye (hoping to see it beginning to straighten out). He's able to do basic math if it's laid out for him; mental math is still a bit beyond him.

Debbie, his primary nurse on weekdays, has been using a cue sheet for dressing; he's doing well with that and she will start using a cue sheet for his medications. He's independent for self-care, eating, and asking for what he needs, and she observed that his appetite has increased.

Dr. Lingenfeld observed that Paul has made good gains in the 2 1/2 months since the accident, but he still needs a good deal of assistance, and there's still a long ways to go. He pointed out that brain injuries heal on their own timetable--the brain needs time to heal anatomically. Hard work, such as Paul is doing, will help with function, but no amount of hard word will help when the healing isn't there. In other words, initially Paul will need 24/7 supervision when he first comes home, there'll be outpatient therapy, and getting back to work is still a ways out. Paul had expressed the hope he could be back to work in a couple weeks, and that's not how it'll go.

Those comments aside, he has noted that Paul's antsiness or anxiety has increased since the Abilify was stopped, so he's wondering if that needs to be resumed. He also decided that the blood thinner could be stopped as Paul is much more active now. That was good news to Paul--no more injections!

Please pray that tomorrow go smoothly, and Monday with the ENT appointment. Pray that we'd settle on the best time for an overnight pass, and that all the details for that would work out. Pray for a wise decision about his discharge and coming home, and all the outpatient therapy that we'll need to coordinate into our daily routines. And pray that practical needs would be taken care of.

Friday, November 4, 2011 3:48 PM, CDT

Oh, boy

Did I say that I felt that they (HCMC staff) might push but wouldn't rush me? Well, that's still true, although right this minute it does feel like a bit of a rush. I am home from today's care conference, near the end of which Barb put giving Paul a pass this weekend, this Sunday, out in front of us.

Now, I was fairly certain going into today's conference that this would come up, so I had been thinking some about what would be most practical. So that made it easier to say yes, and perceiving that they will do all that they can to educate and equip me for it helped. It will be simply a day pass, and the tentative plan is to pick Paul up after second service (maybe during, depending on some other details). He would be home with us for lunch, and then we would take him back to Knapp around suppertime.

For all that I anticipated this occurrence, it still is an intimidating thought. I likened it to what it felt like for me and Paul bringing Emily home after her birth--no real idea what to expect, but somehow we'll manage. I really don't know exactly what it's going to be like to have Paul here, I don't know just what to expect, but I know we'll manage. As I was told, one purpose for these home passes is to help us see how things will go, what modifications might need to be made, how we'll all do. And if things are spiraling out of comfort, we could bring him back earlier.

We are also looking at having an overnight pass sometime next week--nothing determined yet, that'll be discussed more after this day (afternoon) pass. And then Paul possibly will be discharged next weekend. That does feel a bit more like I'm being rushed, but he is making good progress and is less and less needing medical care. There will be therapy and we'll work that schedule out once he's home--there are plenty of details to sort out for that, from when, what days, to paying for it.

I will be doing more checking into various sources for meeting our needs. Barb advised checking with the post office about disability, and about any aid that might come from the union, since Paul is a union member. In light of time, that might wait till Monday, but we'll see. Paul also would like to be able to attend Sunday school, but I'm not sure that that will be doable this weekend. That might have to wait till he's discharged.

Pray that this pass and Paul's first time home since the accident would go well and smoothly. I'll update again later today (probably) and give more of a synopsis of the care conference, and maybe more about this planned visit home.

Wednesday, November 2, 2011 9:46 PM, CDT

Yesterday Barb, our Knapp social worker, and I talked. It was a good and helpful conversation about some of what is coming as Paul improves and is ready to be discharged from Knapp. I haven't reviewed the notes I made, but here are the key points as I remember them.

Home health care will NOT be an option for Paul. Barb explained that this is because he will need supervision, not medical care. That means that I will need friends, other people, to back me up. I could perhaps hire someone, but we'd have to pay for that ourselves, so it's not a very feasible option at this point.

As we talked more Barb gave as her opinion that for Paul to come home, for it to be manageable for me, he needs to reach two goals: 1) He is able to be unsupervised at home for 1-2 hours; and 2) He is able to navigate--to be dropped off, find his way up to his therapy, then make his way back down to the entrance to meet me when therapy is over. This is assuming that he does outpatient therapy at HCMC, where it could be quite challenging for me to find parking. Barb did mention they have a ramp, but my experience with downtown parking...if I can avoid it, I will!

This conclusion felt right to me, as did Barb's remark that Paul remain at Knapp through next week, to give them time to bring him to these points. So this was what she was going to say and recommend to the staff, and we'll see how things are shaping up Friday during the care conference.

We still will have him come home for a day, or half day, or an overnight, to help assess what this will be like, how ready he is for it (and how ready I am!). Earlier this evening Paul called and brought this up, and told me that whatever I decide about when this will be is fine with him, that he will abide by my decision because I'll make a wise one.

Another issue that I shared with Barb is vehicles, or transportation. I am concerned that Paul might have a hard time getting in and out of our car, and when we all are going somewhere (ie, church) it'll be even harder. So I am faced with what to do about our minivan, which has been out of commission since the end of April (and now the battery is dead, since it's not been started since then). She was going to bring that up with physical therapy, so we'll have to see what is recommended.

As I said, at least another week at Knapp feels right for me. It will give Paul time to make further improvement, and it will give me a window of time to make preparations here to be ready to have him home. There will no doubt be adjustments to make, no matter how ready I think I am, but it will be good. The sense that I and Barb and the folks at Knapp are working together is reassuring; last week I sort of felt that whether or not I was prepared (especially emotionally) to have Paul discharged to home they'd be pushing it. Yes, this may well push me some, but now I feel more that it won't be rushing me, and that's a relief.

Though we've not talked directly about decisions and doing things, Paul's remark that he would go with whatever I decide about the home pass encourages me that he will be amenable to participating in the discussion and then allowing me to do the work. Please continue to pray about this, about how best to handle it. This will likely come up some during this week's care conference, though I'm not sure exactly how it will be presented. It is, as I've said before, a sticky issue and I need much wisdom to handle it well.

Paul also expressed concern about the whole ear reconstruction surgery--not to back away from doing it, but that the whole thing be much bathed in prayer. Dr. Walsh is experienced, I am confident that he will do his best throughout the process, and that God will direct his hands and oversee everything. Still, I agree with Paul that we want this prayed through from start to finish.

Monday, October 31, 2011 8:58 PM, CDT

I had thought that perhaps today I would have time to call and talk with Barb, "our" social worker, to begin talking through some of the questions and concerns I have about what's next. That covers quite a range of things, so most specifically it would be what having him home and having home health help or whatever might look like, how we'd pay for things, what if any accommodations or modifications I'd need to make to the home environment...as you can see, the list grows quickly!

However, the ENT appointment this morning took the whole morning, between dropping the children off, getting down to HCMC, having the consultation, getting back home, picking up the children, and getting back home. Once home I tackled laundry and bills, and made a courier run to Hope (to take something for Halley). In other words, I didn't squeeze out the time to call Barb, so that goes to another day.

I was expecting this consultation to be about reconstructive surgery for Paul's ear, so I was a little surprised when the discussion centered on putting a gold or platinum weight on Paul's left eyelid. Huh? Now, this had come up during the care conference, so I did put the pieces together fairly quickly. As a consequence of the accident, Paul's left eyelid doesn't close completely. This opens the door for his eye to dry out, which could lead to various complications that would adversely affect his vision. So they were thinking that by putting this little weight under the skin of his eyelid it would close completely, and that might cut down on the need for the ointment. They also spoke of using a humidfication bubble at night to keep the moisture in, which would also help.

This was from Dr. Cook, an ENT resident. He assessed Paul's eyelid function and remarked that even in the week since they'd last seen Paul there'd been some improvement--when Paul really worked at closing his eyes tightly he could achieve that, so the gap is slowly decreasing. Because of that, having the weight became more optional; he said we could wait and monitor it, do this humidification bubble at night, and recheck in a few weeks. Paul was much more inclined to this avenue; he's concerned about his vision and doesn't want to tamper with his eyes lest it make things worse. This would not be his eyes, exactly, but his eyelid, but still...I know a part of it is because he knows the challenges I have because of my vision limitations, so he's wary. Anyway, on this we agreed that no surgery, no little eyelid weight, is going to happen at this time. We'll wait, and pray, and ask you to pray that there'd be continued healing for his eyelid, that it would close completely.

Just as this decision was made Dr. Walsh came in. He's the one who would do the ear reconstruction, so this turned our conversation to that matter, after a short summarization about Paul's eyelid. The first thing he pointed out is that the opening of Paul's left ear is very narrow, and that probably plays a role in the difficulty he has hearing with that ear. So one objective of surgery would be to open that up. Another would be to give Paul a place to "hang his glasses". Those two things alone are good reason to go ahead.

This reconstructive surgery would be a lengthy process. Dr. Walsh explained the steps: It would start with a surgery to insert an expander, as there's need for sufficient skin to cover the ear that would be made; then there would be weekly appointments to increase the expansion by adding a few milliliters of fluid at a time. That will take a few months, and then Paul would have the major surgery to actually construct his new ear. For this Dr. Walsh would take rib cartilage and fashion the ear, doing his best to make it match the other ear. He said it would lack some of the detail of the right ear, but he'd aim for as much as he could get. There would most likely be at least two "touch-up" surgeries after the main one to finish the job, and these are three months apart. All in all, this whole process could take 10-12 months, maybe longer.

Dr. Walsh took the time to explain, also, some of the possible problems that could arise. If during the expansion there is any tearing of the skin, if they see the expander...we'd have to remove it and work with what we have at that point, which might not be enough to do well what he plans. Even so, it seemed to me and to Paul that it is well worth the attempt.

With that, we initiated the process. Dr. Walsh determined the expander he'd use--he actually chose to use two expanders, in light of the scarring Paul currently has (since that's the tissue that is most likely to tear, so he's seeking to expand above and below it)--and took a bunch of pictures for reference as he "builds" Paul's ear. Next Monday Paul will have impressions done of both ears, and Dr. Walsh wants me there (I'll be pressed into service somehow with doing the impressions). Tentatively, December 6th is the date set for the expander insertion; that will be confirmed the day before, and that'll be when I learn what time his surgery is scheduled for. Of course, this is also contingent upon Dr. Walsh getting the expanders by that date!

As I close this update, I realize that I haven't given much of a recap of the care conference. That will come as soon as I am able to get to it. We will have another care conference this coming Friday, and that is, honestly, one reason I want to talk with Barb soon. The suggestion had been made that Paul's progress was such last week that in another week he might be to the point where he doesn't need the level of care of the hospital and could be discharged to home. My first and inner reaction was, "I'm not sure I'M ready for this!" It's intimidating, there are so many unknowns, as I alluded to earlier. But as that idea sank into my mind I found myself saying, "All right, I may not feel ready, but God will give me whatever I need to handle this." So, we shall see. Please pray for this, for al the decisions and discussions. Continue to pray that I would have wisdom about how to handle decision making, what course to take, how to talk to Paul about this. It's a sticky, sensitive situation, and I need much wisdom and grace, and possibly help to handle it well.

Friday, October 28, 2011 10:54 PM, CDT

(Trying to be) Thankful for little things

It's late and since I have a little human alarm clock, and have to be ready to dive into the day by about 8:15 tomorrow morning, I need to keep this short. So I'm trying to focus on little things that are good bits of news, since there is also a lot happening with this, that, and the other thing.

So...today's care conference went well. Please don't ask me who all was there--picture perhaps eight-ten people, besides me and Paul, in the room, and rather rapid introductions before they took turns around the room giving their observations from this past week. The overall opinion is Paul is doing well, he is making progress and they will continue doing what they are doing, in general.

They'd like to give him a day pass, or partial day pass, or an overnight pass, so he can come home and we can see how things look for that--one step on the way to getting him home. That sparks a lot of questions for me, like stairs, and I don't know what all right now, just that concerns start swirling.

Paul is delighted that the feeding tube is out.

A psychiatry (I hope I spelled that correctly) resident talked with Paul after the care conference and was going to discuss with the attending psychiatrist about tapering down and weaning Paul from the antidepressants he's been taking, to see how he does without them (there's speculation these meds are affecting his motor functions, and might not be necessary). Paul is excited about that!

I have care for Emily and Samuel for tomorrow morning while I attend Saturday school with Halley. And I am blessed that someone is able to watch them Monday morning so I was able to schedule the ENT appointment. Now I am praying that'll be more or less on time.

This is my "off the top" list of things to be thankful for and encouraged by. There are an equal (or greater) number of things that could tie me up in knots, and I'll likely speak of those another time when I am not so rushed, since prayer will do much to settle me and resolve them!

Thursday, October 27, 2011 9:09 PM, CDT

Tonight's update, as sometimes happens, is more about me. Since Paul arrived at HCMC last Thursday it seems that there's been a flurry of activity and more phone calls from different clinics and people scheduling (or wanting to schedule) appointments, some of which they are asking me to come to as well. I feel as though I'm swimming in dates and data, and I'm not sure who's who, who's doing what, and who's connected with whom. I'm still trying to work out child care for Monday (the 31st) to have an appointment with ENT to discuss some surgery for Paul. That's looking very iffy at the moment, so it may end up being pushed out a week. Today I had a call from another clinic concerning reconstructive surgery on his ear, which will be a series of appointments to actually perform the reconstruction...and they'd like me to be present so I hear all the details.

One of the issues that is pressing on me is that of who should make the final medical decisions right now? It doesn't seem that Paul is ready to do that. He's doing very well, yet it seems overwhelming for him to have to decide. So one question tomorrow may be, "Is Paul fit to make medical decisions/give consent?" Do I ask such a question of the doctor in front of Paul, or is that something best discussed privately, to get her opinion? And then how is it handled with Paul?

Besides the medical appointments I am continuing to wade through the matter of legal action. This has been and is a hard one to address. Right now I'm at the point where I am saying "Yes" to a lawyer to embark on an investigation, to assess what sort of a case there is (how likely to get a favorable settlement). But that's also brought up the issue of who makes the decisions, finally.

During my conversation with a lawyer this afternoon I found myself thinking and saying that this (taking legal action) is part of how Paul might be providing for our family. He wants to care for us, to provide for us; in his mind I'm sure that that centers on his being able to get back to work, and that is one of the unknowns in this situation. Letting the lawyer act on his/our behalf may be an appropriate step, much though Paul usually steers clear of lawyers. Put in those terms Paul might agree. But whether he is capable of giving his consent is unclear. He does understand things and is agreeable (like with the DD-14 matter), but is he really capable? If not, what needs to be done, and will he yield to temporarily giving me the power to make decisions and enter into agreements on his behalf, in his name? There are a LOT of sticky points here, and I'm feeling a bit like I'm floundering.

Toss in that BCBS has sent me a form suggesting that they won't cover his medical bills...since this was the result of an automobile accident...and then want to know if our auto insurance's personal injury protection coverage was exhausted so they know how to bill and such...thankfully I had paperwork showing that this was exhausted, so it's copied and in the envelope to mail back...but all in all, it's been a week of swirling activity.

It is also the eve of the initial care conference. Tomorrow for the first time I will meet many of the people who are directing Paul's care--the doctor, a nurse, therapists, a social worker (not the one who'll usually work with us). This will help set the broad outlines for Paul's stay at Knapp--how long they anticipate his stay will be, what I need to do to be ready for him to be home, things like that. It could also open up things that I haven't been ready to delve into, such as short-term or long-term disability and other considerations along those lines. It's not quite as absolutely overwhelming as things were initially, right after his accident, but tonight I am finding myself more unsettled, bombarded with "what if...", and uncertain exactly where to go, who to call on for guidance. I am holding hard to God, yet I am sensing that there is terrific need for human counsel for me, and maybe even for Paul.

This is a new and stressful phase of our marathon with no clear endpoint. Please pray wisdom and peace for me, and for Paul. Pray I'd know what to do and where to go, who to talk to for wise, godly counsel and help in this. Pray God's provision for our needs, be they medical, legal, insurance, work, childcare, meals, help with home tasks or other things that Paul would normally attend to, even respite for me, and for whatever practical assistance we might need as Paul comes home. I've been hearing that initally at least someone must be here 24/7, and I'm not sure exactly what that means. That's another question for tomorrow...and those kinds of things, I fear, are going to be rough for Paul to hear and have to accept. They're not easy for me to entertain, so I can only guess at what a blow they might be to him.

Monday, October 24, 2011 10:30 PM, CDT

Between a call from Paul this afternoon and a conversation with his nurse this evening I have concluded that indeed yes, for a while yet I will be teh one making final medical decisions. It could be partly that today was a very long and tiring day for him; his day nurse reported that between therapy (three hours) and two appointments (ENT and audiology) that were coordinated so he went from one to the other and then back to Knapp he was on the go for eight hours. He was quite fatigued this evening; one walk around the unit and he was winded, so he was expressing some anxiety about his endurance. The nurse told him she'd tell his doctor, so Dr. Roehr (I presume, as she's his primary physician) could talk with him.

With me, he indicated that he'd had lots of information presented and he was confused. I didn't even clearly understand what he meant about his eyes/vision; he said someone said something about his left eye being better, but he doesn't think so, and then he talked about being worried that he'd not have any vision in that eye. I doubt that this was from the ENT session, and that was the only one I had been contacted about, so I said that I would check about it for him, and he was relieved that I would take care of it. So, even as he's able to participate some, it appears that I will continue to carry the responsibility to make medical decisions on his behalf for at least the immediate future.

Much of this is in a holding pattern, as I wait to hear back from Debbie, Paul's day nurse, who will be in touch with me tomorrow to hopefully clarify some of these things. Please pray PEACE for Paul. Pray he would not fret, that he'd relax and rest, know that this fatigue is normal because he IS working harder...and he is adjusting to new faces, which is also exhausting. Pray he would be gentle with himself when he is wiped out after a long day such as this one was. And pray that his worries about his vision would be rolled off his shoulders into God's hands, and that his vision difficulties would resolve themselves day by day.

Pray for me also, that I would be guided as I work out appointments and details, and continue to manage all that comes to me. As the nurse said this evening, an accident like this affects the whole family, not just the individual. I put it as Paul is exhausted and overwhelmed, he's debillitated from his injuries, and that is more taxing that you would expect, while I am just overwhelmed (as if there's such a thing as "just" overwhelmed). God is gracious, and he has been my rock of refuge through this, and has blessed me over and over with help and support from so many people, and so many prayers. Without him I would have crumpled under this!

Monday, October 24, 2011 3:01 PM, CDT

Needing some help

I had a call a bit ago from the ENT clinic; Paul had had an appointment there this morning. Dr. Walsh wants to meet with me to discuss possible surgery, since I have been making the medical decisions for Paul. That is shifting some now as he improves, but my guess is he'll defer to me on final decisions for things for a while yet....

The need is someone to be with Emily and Samuel while I attend this appointment. It will be on the care calendar later today with more details. Please check it out, let me know if you are able to help, and pray that God will provide for this need. I really need to know by Wednesday so I can get back to the clinic and make arrangements there and with Knapp for Paul to be brought over.

Saturday, October 22, 2011 9:11 PM, CDT

A heads-up for anyone who visits Paul over the weekend: The entrance to the Blue Building is locked on weekends, you must enter through Emergency. I couldn't quite memorize the route today when the children and I stopped--we went up, across, down, around, through, up--something like that. I'm sure that I will become more confident of the path to take from Emergency to the Blue Building, but for now my best advice to anyone visiting on Saturday or Sunday is to follow the signs. And maybe ask.

It's a great joy to me to see how much improved Paul is in his thinking. He's asking for things and putting so many pieces together. I love, too, how I've thought something, and then he brings up that topic. On Wednesday I found myself thinking maybe he would want his wedding ring back on; at the time of the accident they'd removed it and given it to me along with other personal belongings, as that was safest. I'd not asked when he might be able to wear it again, figuring we'd just wait till he came home. Thursday Paul inquired if I knew where his ring was, and said he'd like to put it back on. I promised I would bring it this weekend, and mentioned my one hesitation, that mabye it'd be too loose since he's lost weight. He replied that he has fat fingers, and reiterated that today when I brought it and slipped it back on. I was, honestly, pleasantly surprised that it wasn't loose!

Seeing this progress lifts my heart so much. And it's made me realize that though we are still trekking through a marathon we've entered a slightly different phase. Up to now I've been in the position of making all the decisions, giving consent for various treatments, as Paul was not able to participate in those things. Now he's more able to be involved and to give consent, so I have to figure out the balance, hand the privilege back to him when appropriate, know when to consult him before I make a decision, and so on. And it'll keep changing as he continues to recover!

There are still unknowns in this: how long he'll be at Knapp, how much he'll regain, what sort of outpatient therapy might he need, when he can return to work (which has a whole subset of questions), what if any accommdations we might need at home for him.... Some of these may be answered at the care conference on Friday (and it sounds as though Paul will be present for that too!), and the rest will have answers as they come.

Thursday, October 20, 2011 5:50 PM, CDT

As of about 11:00 this morning Paul had arrived at HCMC and was in his room resting a bit. Some assessment was being done and some orders being written by the resident so he likely was going to have some therapy this afternoon. Dr. Roehr will be his primary physician; she was to see him this afternoon and would write any additional orders for him.

Over these first few days (I presume today, tomorrow, and perhaps into Monday) various therapists will evaluate Paul and set goals and all. Sometime next week there will be an evaluation conference where all the people who will be working with Paul--doctor, a nurse, therapists, social worker--will meet to map out his therapy and treatment, set a target date for discharge, and so on. This is a conference I really need to be at, so I ask for prayer that I'm able with fairly short notice to arrange care for Emily and Samuel. A friend has already said she will help, so it will depend on her schedule and when this conference is. Julie, the NAP staff who called me today, said they will let me know when it is set up.

As I mentioned before, Paul is in the Blue Building at HCMC. Julie told me this is the Medical Specialty building across from the park on 8th Street (heading east from downtown), and NAP is on the third floor. During the week it's possible to enter the building directly until 8:00 pm, at which time the doors are locked and you must enter through Emergency. I'm not sure exactly how you get from there to the Medical Specialty building, but I'm sure I'll find out within the next few days!

Paul is in room 3358. He does have a phone in his room; that number is 612-873-0725. The number for the NAP nursing station is 612-837-4303.

Julie told me that visits during the day are best over the noon hour or after about 4:00, since Paul will have several therapy sessions each day (totaling three hours). She said to anticipate that he will be tired, especially this first week or so. I know he will still appreciate visitors, or even a phone call, so please feel welcome to call or stop by.

Wednesday, October 19, 2011 10:38 PM, CDT

Today's rounds update: Overall, everyone is pleased with the great gains Paul has made in just the last two weeks. It seemed to them (and to me) that things clicked and he began to make much better progress.

Dr. Robitaille ordered a patch for Paul's left eye, with the intent that it might cut down on any double vision he was having. And Dr. Scanlon discontinued the Fragmin (not sure of the spelling there) that Paul had been taking, as he is now much more active. This was to prevent clots when he was less active.

In physical therapy, Paul receives standby/contact guard assist for transfers and is walking (ambulating) 300 feet. He is able to manage 18 steps (stairs) with one rail. He still needs cues for his posture, but overall he is doing well!

For occupational therapy, he is mostly independent for self-care; staff is in the room to monitor that he's doing a thorough job, but he's doing it on his own.

He's doing much better in speech therapy. Yesterday they started doing some cognitive testing; Ann wasn't sure if they'd finished it. He is at 80% accuracy in answering complex yes/no questions and simple problem solving tasks. He's demonstrating steady progress in orientation and problem solving; orientation involves time, space, situation, and person, and Paul is "oriented x 4 with minimal cues to time".

He had progressed to NDD3 diet, which is nearly normal food, as best I can figure--softer, perhaps, and easier to chew things is my observation based on the breakfast tray I saw this morning. That is going well.

The glasses are not, as best I can determine from comments, precisely right, but they definitely are an improvement over not having any correction. He doesn't wear them constantly, but has them on a safety strap and has another strap that helps hold them in place. He found it amusing today to convey that he could see best when he looked at me, but not so well when he'd look at other things! His sense of humor is DEFINITELY still present!

His appointment with Dr. Schmidt went well. In light of the progress and improvement in his range of motion following the injection he had a week or two ago Dr. Schmidt said that surgery was not indicated. Since he is going to be back at HCMC they'll be better able to continue therapy and whatnot to further improve his range of motion. Paul brought up some knee pain, and they will likely also address that with therapy and possibly other procedures.

As for his transfer back to HCMC, Paul is scheduled for pickup at Bethesda at 10:00 tomorrow (Thursday) morning. I've asked that HCMC contact me once he's there and settled, as Samuel has Musikgarten so I won't be able to meet him there. I do know that he will be in the Blue building, but more than that I don't know yet. I anticipate updating the healthcare facility tomorrow afternoon or evening, and will probably also his room number. If he has a phone in his room I will possibly post that here too.

Tuesday, October 18, 2011 7:12 PM, CDT

Good news (thanks, God!)

This afternoon the children and I stopped at Bethesda to deliver some socks and Paul's glasses (the ones that had arrived the day after his accident). He'd been saying that his feet were cold, so the nurse had called yesterday to ask if I could bring in some warmer socks for him.

Paul was down for some therapy when we arrived, so we didn't see him (and we were out for a while, so we missed his call saying thanks for the socks and especially the glasses). However, as I finished giving the items to the nurse Anne (that's the correct spelling of her name, according to her badge) stepped up to join me and the children. She'd called me earlier, while we were out on our library et al run; Emily said my cell phone had rung, but she didn't recognize the number so she didn't answer. Well, I called and got Anne's voice mail, so I left her a message. I thought maybe we'd cross paths at the hospital, but wasn't extremely hopeful about that. I presumed that she had news about one or the other of the referrals she'd made on Friday, and I was right.

Anne told me that she'd recognized my voice as I talked with the nurse, and she went downstairs with us so she could tell me the news. She had indeed heard from HCMC--Paul was accepted to the inpatient acute rehab program!

This was a huge answer to prayer! Two or three weeks ago I had begun mentioning the issue of where Paul would go after Bethesda and what our health insurance would and wouldn't cover, which led to my acting to get VA benefits in place. People then began praying that he would make such progress that he would be ready for acute rehab. A few days ago I spoke of how things were moving, that I'd accomplished the first step to VA benefits but they weren't fully in place, and it was looking as though Paul would be ready to leave Bethesda before they were.

Over the weekend, knowing that Anne was going to be making the referrals (since she didn't call me on Friday), I kept thinking and praying, and reflecting on the progress I was seeing and hearing in Paul. I began to think that maybe he WAS at a point where he could tolerate three hours of therapy, which was one of the conditions for acute rehab at HCMC.

Anne agreed; she remarked that over the last couple weeks Paul has made steady and significant improvement. They've been delighted and encouraged by his progress, and she is thrilled that this has worked out.

As of now, the plan is that Paul will be transferred to HCMC on Thursday. Anne will give me the details tomorrow along with the weekly update. He is still going for the appointment with Dr. Schmidt tomorrow morning and I will go as well. By God's providence, Halley is off school so he will supervise and the younger two will do school, as much as they can on their own. Anne said that Dr. Scanlon felt that it would be better for Paul to return to Bethesda after the appointment and be transferred the next day.

Thursday, October 13, 2011 9:17 PM, CDT

The form that I have been waiting for arrived in today's mail. My original plan had been to go over to Bethesda right away and get it taken care of so I could try to get it down to the Government Center before the end of the workday. Our mail now arrives later in the afternoon--between three and four--so by the time it was here it would've been very tight to get over and back, especially with rush hour traffic. So I decided that we'd go right after supper, visit for a bit and have Paul sign the document, then be home to do our usual evening routine. We did go right after supper, but the traffic was still on the heavy side, so it took longer to get there, and then I asked for someone else to be present when he signed, since two witnesses would be necessary if he was unable to sign his name and simply X'd it. That was a bit of an issue, but eventually we did get someone to come in and be there...and praise be to God, Paul was able to sign his own name!!! It's larger than he usually signs, but absolutely legible, and he clearly understood that he was signing to get a copy of his navy discharge so we could get the VA benefits in place for a care facility after Bethesda. I'll probably need him to sign the actual application when I have that, and now I know he can do so!

Emily and Samuel accompanied me, and both were pleased with how their daddy is doing. Samuel informed him that he only has three more floors to go before he can leave Bethesda; he thinks that since Paul started on the fifth floor and now is on the fourth floor he still needs to go through third floor, second floor, and first floor, and then he'd come home. I'll have to explain the reality to him soon!

During this visit I observed that Paul's left eye is turned inward. A friend who'd also observed that shared that this might be simply muscular in nature. He wonders if getting Paul's glasses, the new ones that came in the day after the accident, might be a wise move, even if that prescription isn't exactly right now. I do keep weighing it, and think that I shall call and discuss it again with the clinic, see what they say, and go from there. Incidentally, according to Paul that was one reason his signature is larger--he has to write bigger to see it!

Please pray for this issue, and for soothing and resolution about other physiological worries that Paul has. He was moved up a level on the NDD diet, and it didn't go as well, he had more trouble swallowing. Additionally, the food doesn't taste like home food, and he misses the foods he really likes! Pray for speedy action on the VA benefits process--Paul's discharge paper to arrive, and getting the application through quickly so everything lines up for where he needs to go and when. Pray for the phone calls I'll be making tomorrow, and for wisdom in deciding what to do.

And one last prayer request: Pray for my need for child care on two particular occasions to be met. I was delighted to see God work out something for Emily and Samuel for today when I had a doctor's appointment. Both of the occasions are on the care calendar, and they are both significant instances. One is a session at HCMC concerning his shoulder, and my being present as his advocate has been strongly encouraged. That's the 19th, next Wednesday. The other is a school function for Halley, and if I don't make that because I don't have child care for Emily and Samuel I have to do a makeup session during the week, and would again face needing child care for that period. I'd much rather make the Saturday school session and have it done. That is the 29th, the last Saturday of the month. I hope that I'm not coming across as twisting anyone's arm; I want to mention "major" needs so others know where I most feel a need and can join me in praying, that we may rejoice together when God moves.

A last note: It was very sweet during our visit this evening to pray together with Paul. It's been a long time, and hearing him pray out was precious. It's so encouraging to see how much of the heart of who he is come through; it gives such hope for his recovery!

Wednesday, October 12, 2011 9:28 PM, CDT

Two weeks, activity, and timing

Well, today I talked to Ann and received not one but two updates: She gave me the update I would've received last week, and then the one from yesterday. So here we go.

From last week's update: General notes, Paul is using his call light more appropriately; he continues to be impulsive and perseverating (overly focused on one thing, asking about it again and again); during a meal observation he was spitting out food so they'll continue observation and trialing.

In physical therapy, Paul needs contact guard-minimum assist for transfers, is walking 300 feet with minimal assist, and they continue to work on his balance. In occupational therapy, he's at minimal assist for grooming, minimal to moderate assist for lower and upper body dressing.

Now, shifting to this week's update: General observations included that Paul's eyelid tone is improving (they noted less sag/droop to it); the IVC filter was removed yesterday (that was apparently a rescheduling, as I had it down for today and misunderstood the nurse last night when this was mentioned); his diet is now NDD-1 with thin liquids and supplemental tube feedings if necessary for calorie intake; he was successfully out of the net bed last night (slept well, didn't try to get up and walk around).

NDD stands for National Dysphagia Diet, which has three levels. Patients are started at level one--soft or pureed foods, about a pudding-like consistency--and move up as they are able. Ann told me later in our conversation that they'd trialed him on level 3 (eating a cracker) and he wasn't able to chew adequately, so he remains on the NDD-1 diet and they'll trial again in a few days.

Physical therapy: Again, contact guard to minimum assist for transfers; walks 300 feet x 2 (walks the first 300 feet, takes a short break, then walks the second 300 feet); needs cues for safety (look where you are going, lower extremity advance (aka stride length), using hand-hold assist.

Speech therapy: In addition to the diet matters above, Paul's participation and perseveration improved. They did some verbal problem solving, and he's at 80% accuracy with moderate cues. Today (this fluctuates some from day to day) he was oriented as to place, self, and situation (in other words, he knows where he is, who he is, and why he is where he is), but was not oriented as to time.

Occupational therapy: As a cognitive test, Paul was asked to sort colored beads, which he did with minimal assist. He's following one-step commands with 90% accuracy and did some problem solving (alternating patterns) with 100% accuracy and reassurance of his choices. He is following directions well and is pleasant and cooperative. For hygiene (grooming) and both upper and lower body dressing he's now at minimal assist.

A huge piece of news was the "getting out of the net bed". This is the piece that has kept him needing the level of care Bethesda offers, and this progress means that we are definitely looking at his being ready to move from Bethesda in the near future. It's wonderful news, and at the same time it's nerve-racking, because the VA benefits are not yet in place, so we have to somehow work these pieces together! I keep reminding myself that God is absolutely in control of this, he knew I wouldn't get things rolling till last week, knew that Paul would make this progress now (and unsettle me as to what will happen), so he WILL pull it all together perfectly. It truly is in his hands, because I have no control over when the form for his navy discharge papers will arrive, how long it'll take to get the copy, how long it'll take to process the actual VA benefits application, or even what sort of care facility Paul will be qualified for. It could be that he'd be able to go to HCMC, to their acute rehab, or it could be that he'll be better served by a transitional care facility such as the VA hospital (which also brings the wrinkle of bed availability since this is not a service-related injury--if I understood correctly, if only one bed is available someone with a service-related injury has priority).

In any case, Ann waits to have three consecutive "good" nights out of the net bed before she moves into the referral phase. We discussed this--the state of the VA benefits application and all--and here's how it's laid out at the moment. Presuming Paul does well out of the net bed tonight and tomorrow night, bringing it to three consecutive nights, Ann would make the referral(s) on Friday. We agreed that she would refer him to both HCMC (to see if he qualifies for the acute rehab there) AND to the VA just to get him on their list, on their radar. She said she'd explain that I'm in the process of getting his benefits and we want to get things going there if he's best served by that facility. If HCMC's NAP accepts him it's possible that he could be transferred there by next weekend. That is speculation on my and Ann's part, so please don't hear that it's happening. I'll definitely update if this comes to pass!!

As you might have figured out by now, things are moving and not all the pieces are lined up yet. The unknowns--when the paper I'm waiting on will come, how quickly the discharge paper will arrive once I get the signed request back to Bobby, how long it'll take to get the VA benefits approved and available, whether Paul qualifies for acute rehab or needs a sub-acute/transitional care level--are all things that are outside my control. As soon as the request form arrives, and I am hoping it's tomorrow, I will be juggling to get it over to Bethesda, get Paul's signature or mark on it, then hopefully get it to Bobby before the workday ends so he can fax it to St. Louis. This is on top of the rest of the activities for tomorrow. Then it's more waiting and praying and trusting. In all honesty, I'm unsure how to pray. Do I ask that Paul not have three good consecutive nights out of the net bed, so he has to remain at Bethesda for a bit longer, hopefully long enough to let the VA benefits be in place? Do I ask that he make even more progress, and the steps forward in just one week are a gift, so he qualifies for acute rehab? Ultimately it comes down to praying, "God, your will be done," and asking him to decide which of these comes to pass--or something I haven't thought of!

Before I close tonight, I want to say a hearty, "Thank you!" to the people who've visited Paul over the last week or so. I spoke of how I'd needed a step back, that I was overwhelmed and it was too much to visit him myself. I know several people visited and that lightened my heart. I've been holding off on visiting yet this week, as I wanted to have that request form and get it taken care of. By last night I was thinking that Paul might be wondering if I'd forgotten him, might be questioning if I loved him. Today I had a call from the chaplain at Bethesda; she wanted to give me a heads-up that Paul was feeling sad, was missing me, was wondering if he loved me enough, if I knew that, and so on. She tried to encourage and reassure him, and would say that yes, I did love him, and he'd say something like, "Really?" He'd be relieved, and then would keep thinking and feel sad again. After she and I talked she had him brought down to the nurses' station and called so I could speak with him and personally reassure him. She felt that that would go a long way to soothing him! She'd also mentioned that he was feeling badly that I am having to cope on my own with the children and homeschooling and everything, and then he asks me to take care of things for him like talking to the doctors and making arrangements for his needs. I told him that I'll be coming in with a paper for him to sign, and I want a hug. Please pray that I would be able to redeem that promise soon, even tomorrow.

And please continue to pray that I would wisely decide about consulting an attorney. That's a hard thing to consider, and knowing Paul's viewpoint about lawyers adds to the stress I feel about doing something he'd not be thrilled about. It really seems a step I need to take, to at least talk to the attorney, to provide for Paul's and our family's future needs, but it's quite intimidating. 

Tuesday, October 11, 2011 10:39 PM, CDT

It's not a lot of information, but I did talk to Paul's nurse not too long ago. I'm guessing he was sleeping, not unexpectedly, as the nurse asked if he should tell Paul I had called if he woke up; I said, yes, please do, and especially tell him I love him, we all love him.

The most encouraging bit of news for me was the detail that Paul is eating small meals well. His food is pureed so it's soft and easy to swallow, he doesn't get large portions, but he eats what is served to him. As you can probably imagine, pureed food is not the most appealing in appearance, so this is pleasing. No indication if the feeding tube has been removed, but that's a detail I will likely get from Ann whenever I speak with her.

Tomorrow, the nurse reminded me, Paul is scheduled to go to HCMC for the IVC filter removal, presuming all looks well when they do an imaging. That's in the morning, so likely by the time I talk with Ann (Lord willing) in the afternoon she'll be able to tell me if it was removed or not.

So, this is all for tonight. Tomorrow or the next day I expect I'll be able, finally, to give a much fuller update on Paul's condition and his progress over the last two weeks.

Tuesday, October 11, 2011 5:06 PM, CDT

Form to get Paul's navy discharge papers in today's mail? Nope.

Rounds update from last Wednesday from Ann? Nope.

All right, God, I retreated for the weekend, and now when I think things should be moving again (and I'm sort of ready to face the activities), you're leaving things on hold. Hm.

It is frustrating to not have any progress details to post here, though it's occurred to me that I could call and talk to Paul's nurse and at least get some information. And, perhaps even more significantly, let the nurse tell Paul I called, to reassure him that I haven't dropped off the face of the earth, I'm still here working on things and loving him, even though I've not been in to see him! I don't want him to think I've abandoned him.

At this point, frustrating as it is to not have the rounds update from last Wednesday it might be just as well to let it go and simply get two weeks' worth of update tomorrow afternoon. And it's exasperating to NOT have received the form I need to take to Paul for signature (and no, I don't know if he will be able to sign his name, but I've been instructed how to work around that if need be)...it means more juggling when it does arrive to get to Bethesda, get it signed, then get it back to Bobby. The logistics of the next two days are not looking fun.

So. Pray that when the form does arrive I would get over to Bethesda promptly, be able to explain to Paul what it is, get it signed (and witnessed if necessary), and then manage delivering it to Bobby. It seems wisest to hand-deliver it, the children will enjoy a light-rail trip. Bobby said that as soon as this form is in his hands he'll fax it to St Louis and they'll mail the discharge papers to me. Apparently they're all set to go and are simply waiting on this form. That's why I feel some pressure to rush the signed document to Bobby, but if it's after hours.... Then, of course, we still have to deal with the application for benefits.

That's the next prayer request: Pray that the benefits application would move speedily, so they're in place before Paul is ready to be discharged from Bethesda. Until I speak with Ann I'm not sure of this, but it is sounding like that may come within the next week or two--a scary proposition if the VA benefits aren't in place yet! So I am also praying for the timing of these things.

A third request, more for me, is for help with my children on Thursday while I go to a doctor's appointment. I'd been planning to simply haul them along and have them sit in the waiting room, but it'd sure be less of a worry to have someone at home with them. Pray this work out if it's best, since it's only a couple days away.

Monday, October 10, 2011 9:12 PM, CDT

I don't have the rounds update details from last Wednesday yet; the usual case manager was on vacation, and I never connected with the other one who was covering for her (not for lack of trying!). Hopefully I will touch base with Ann tomorrow and get the details, just in time to have a new rounds update the next day! Ah, well.

This was one of the hardest weekends for me emotionally since the beginning of this journey. I felt that I shut down by Friday afternoon, feeling overwhelmed with all the information that had come at me that day, including a conversation with Paul where he was expressing his confusion and fear about the treatment, wanting to move to a different facility, wanting me to talk to the doctors at Bethesda and HCMC and fix the problems. Normally I would go to visit him over the weekend when I could spend a little more time there (if I didn't bring the children, since Halley would be home), and I couldn't bring myself to go this weekend. I felt a coward for doing that. I'd had in the back of my mind to go in today, perhaps in the early evening after I'd taken Samuel to Cub Scouts so that I would (maybe) have the form I needed to get his signature/mark on ... only I finally realized that with today being Columbus Day there was no mail delivery! So hopefully that form will be in tomorrow's mail and I will manage a run to Bethesda to get that taken care of. The sooner I get that back to Bobby at Veterans' Services the sooner Paul's DH-14 will be on its way to our house, and the sooner we'll be able to continue the process of applying for VA medical benefits.

With no real new news to report, please continue to pray that Paul's vision issues, which are a big burden to him, would be handled well. Pray I'd keep plugging away at the things I need to do, and have wisdom for the decisions I need to make. Pray I would recognize what help I need to cope emotionally, ask for it, and receive it. And for practical help, too--there are a few that are pressing more and more urgently, little things that normally Paul would do, and now I have to deal with. The swirl of the weekend has settled significantly, but I am still shying from action. I'm tired and afraid, needy and scared.

Friday, October 7, 2011 9:22 PM, CDT 

Swirling

I have felt bombarded by information, details, action today, to the point where I find myself overwhelmed and sort of shutting down, trying to let all the information settle in, trying to absorb it all and be able to make sense of things and decide wisely what to do where I need to.

Over the course of this day I had perhaps two hours of phone conversations--with Dr. Robitaille, with Janice (BIS secretary) and with Bobby at Hennepin County Veterans' Services. It's a relief that Paul is, apparently, eligible for benefits through the VA...but of course, we have to go through the application process, which first of all needs a copy of his discharge papers from the navy. Do I know when he got out? No, that was long before we met, and I'm not even positive when he retired from the Naval Reserve. I know Samuel was little, perhaps a couple years old, but I am not sure. So Bobby is sending me the application to get that, and then he'll fax it on to get the actual document so we can get the benefits in place...and then I found that we may be only days away from Paul being ready to leave Bethesda...but we may not have the VA benefits in place...so I'm feeling apprehensive about this. I know that God can work it out, I'm trying to rest in his care, but it's hard to keep my eyes on him instead of on this timing.

Oh, and with this application for his navy discharge...I have to have Paul somehow sign or mark it, and I've no idea if he is capable of writing! I had wondered about his understanding what it is, and that seems to be less of an issue, based on a phone conversation with him (yes, that is a piece of this mix tonight).

I'd thought I would talk with the social worker/caseworker today, but it turned out that Ann, our usual caseworker, was out this week, and the other caseworker was off today, so I won't get through to her for the rounds update till Monday. So I have all this swirl of details and emotions and worry and questions going on, and it's just too much for the moment. I am thankful that this is the weekend, I won't be able to talk to anyone till Monday, so I will have some time to let it all settle in. Please be praying for me, for Paul, for peace, for all the details and logistics and timing to work together perfectly. I hope to fill out this sketchy update with many more details by the end of the weekend, when I am more coherent. For the moment I am not there, and it's rough. God has me, that I am sure of; pray I rest in him.

Thursday, October 6, 2011 9:44 PM, CDT

Thanks to Musikgarten this morning and a couple errands (yes, we made it over to Bethesda to deliver the sermon CDs, and as I haven't heard anything I presume that they were able to play them for Paul) I didn't connect with the case worker for the weekly rounds update. So once again I don't have a full update to share. However, God graciously allowed us to cross paths with Paul's nurse as we were leaving, and she said that he has been doing better, his cognitive processes are improved. She agreed when I remarked that I had noticed that he seemed to have turned a corner on this over the past week. It's good to have that kind of confirmation that others are seeing what I see, and it's especially good when that someone is a medical person!

Additionally, it appears that more and more of Paul's "normal" personality and traits are peeking through. A friend was visiting him Tuesday and said that Paul had known him right off, called him by name, and then later during the visit started to call him another friend's name, caught and corrected himself, and then said several times in a row, "Tim,", which is just what Paul does anyway when he's blooped on a name.

Please be praying in particular for his vision. This afternoon Paul called and said he's been at Bethesda for a while now, he wants to come home and be able to go to the opthamalogist he'd seen before the accident, to get help with his vision. He accepted my remark he has to stay there yet, but pleaded with me to find out and to make an appointment for his eyes. I will talk about this tomorrow when I speak with the caseworker. It seems to me that perhaps we ought pursue doing SOMETHING now--get his glasses, figure a way to hold them in place--even if the prescription needs to be changed in a month. I understand that in some ways he's not ready to go to a neuro-opthamalogist, he's not cognitively where he needs to be for an accurate assessment of his visual needs, yet this is such a burden for him and perhaps is hindering his recovery.

Wednesday, October 5, 2011 10:44 PM, CDT

I didn't get around to calling for this week's Wednesday "after rounds" update, so I don't have that news to share. However, I can say that Paul continues to have steps of progress. I had the opportunity to sit in on a therapeutic recreation session on Monday (he elected to paint a birdhouse, I am interested to know if he's finished that completely yet). During that I found myself thinking that I want to mention to them that perhaps it'd be better to NOT put the full weight of deciding what he'd like to do on him; it seems it's overwhelming when they tell him to decide what he'd like to do. I think it would be better if they gave him a couple options, narrowed the choices down, and then let him decide. I expect to mention that when I do get the Wednesday update, and let them decide if it seems a good direction.

I found out that Paul had requested sermons to listen to when I arrived at church earlier this evening for supper and Wednesday activities. Lori handed me four CDs of sermons and explained that Bethesda had called and said Paul was asking for these, and they had a CD player they could use! I'd been wondering about a radio, as I knew he liked to listen to talk radio programs, but I hadn't pursued it. I love seeing God do things like this! I plan to swing by Bethesda tomorrow and drop them off for him.

With the start-up of fall/school year activities, more people are "tuning in" to this situation in our lives. Several have asked about needs we have, so I'd like to give again the information for the care calendar, as that is a good starting place for knowing what needs we have that you could meet. It is http://www.carecalendar.org/. The ID is 84463, and the code to enter is 7881.

Sunday, October 2, 2011 9:24 PM, CDT

Emily, Samuel, and I stopped in to visit Paul yesterday near noon. He was, as always, so glad to see us. It was quite cheering to note that he was much more--well, I'm not exactly sure of the best word to use. More tuned in, perhaps; his speech patterns were not as slow or as slightly slurred as they'd be, he didn't seem to be grasping as much for words, and most significantly to me, he could explain his concern more clearly. Other times he's been agitated and worried about things, but hasn't been as able to express what he is thinking, so this was a step forward.

It's his vision that seems to be bothering him the most right now, although I think eating and his lack of desire/lack of appetite is also on his mind. He was telling me that when he covers this eye (his left) he can see reasonably well, but when he covers this eye (his right) he can't. He urged me to talk to the doctor about this, because something is wrong, and seemed relieved when I assured him that I would.

In looking at him, I noticed that at this time his left eye is ... well, for lack of a better way to put it, crossed. My supposition is that due to the accident the muscles are still messed up, and that's contributing to the vision problem. The nurse seemed to agree, and this is something that time may help clear up. She told me as well that until Paul is at a point where he is able to answer questions and give information (which he's not quite yet) even a neuro-opthmalogist won't be able to do much.

Lunchtime arrived just as the children and I were ready to go, so we wheeled him down to the dining area. I was a bit surprised at that, and that he had a tray with his meal; I thought that he was still only taking food orally when the speech therapist was in attendance, but he is doing thin/pureed foods. He's not very interested in eating, which could be partially from the accident; Dr. Robitaille had mentioned this to me the other day, that sometimes a person's appetite is gone following a TBI. I encouraged him to eat, and will see how that goes in coming days. I presume that the feeding tube is still in place if they need to do supplemental through that, if he's not eating enough orally.

This was encouraging to see, as well as being a bit unsettling. It hints at his moving along, and there is for me still the worry about how we will handle the issue of how to cover his care once he's ready to leave Bethesda. We are praying that he be ready for acute rehab, which our health insurance would cover. If he progreses quickly on the parameters that hold him at Bethesda, but not to that degree we may have a problem. I do have the information that was sent to me to help with figuring out medical assistance and asset protection, but I am holding off on that briefly...because I am checking into whether or not Paul, as retired navy/naval reserve, has any benefits there that could help cover this. As I said before, I am doing what I can to work things out, and trusting God to put it all together.

One other thing that was reinforced yesterday is how much Paul needs me to be his advocate, to ask questions, to get information, to calm and encourage him. It does put more pressure on me to be talking to Bethesda staff, asking questions and figuring things out to help him understand and cope. Tomorrow afternoon a friend is watching Emily and Samuel for a few hours; I was planning to shop for a pair of sneakers, but it seems that a higher priority will be to visit Paul for a longer chunk of time, and perhaps be able to sit in on a therapy session, perhaps be able to talk more with the nurse, or the therapist, maybe even Dr. Scanlon to go through some of these things that are on Paul's mind. Oh, and get a report from the appointments Paul had at HCMC last week. (And maybe I'll still manage to get the sneaker shopping in, which I'd like so I could start my morning walk again!)

Here is a quick recap of things to pray about: Pray that Paul's vision improves as his recovery continues; pray that his appetite would improve so the supplemental tube feedings could stop (and the feeding tube be removed); as God leads, continue to pray that he would progress to the point where he could go to acute rehab right from Bethesda; pray for me as I work through the possibilities for covering sub-acute care, should that be needed, and that I make wise decisions; pray that I will bear well this role of advocate and become more active in finding out how things are going, to be better able to speak to Paul about things and be the voice of calm and reason and comfort that he needs. 

Thursday, September 29, 2011 7:52 AM, CDT

One thing I forgot to include last night: I asked Ann if a new target date for discharge from Bethesda has been set. She said no date has been set, because they simply don't know when he will reach the point where he doesn't need the restraints for safety (the net bed, mostly). The nurses regularly assess this, but he's not ready yet. His impulsivity and his risk for falling are the two main factors they look at. I have observed it myself when I've been there; he thinks, "I want to _______," and immediately proceeds to do so, not taking into account what he is and is not capable of doing. Once he reaches the point where he no longer needs the restraint, Ann explained, they would have two consecutive "good" nights out of it, and then would begin looking at referrals for the next stage. 

Wednesday, September 28, 2011 9:35 PM, CDT 

Wednesday "rounds" update

Each Wednesday the various staff at Bethesda meet to do rounds and review each patient's progress, so it's a good day to give a fairly comprehensive update here once I've received a summary from Ann, the social worker/case manager-coordinator for the Brain Injury Services floor. Here is what I learned today:

In physical therapy Paul has made some gains. He receives "contact guard assist" for what they refer to as physical transport--simply walking from one place to another on his own steam. I saw this when I visited him on Saturday; the nurse held his elbow as he walked from the chair to the bathroom, and then when he exited the bathroom to go to his bed. That day also she told him she'd "let him find the bed" and he reached out and felt for it, and got himself on it. He is walking 250 feet with a front-wheeled walker; this is down from 300 feet last week, but then he had more support from the therapist, so even though this is a shorter distance it is progress.

He has complained of pain in his shoulder and for weight bearing. Some of the weight-bearing pain might be simply the lack of exercise he had for a couple weeks, before he could be up and moving, and some of it might be related to a previous knee surgery he'd had. I mentioned that to Ann as something to pass along and consider.

As far as the shoulder pain is concerned, Paul was to have a steroid shot. This is something Dr. Robitaille called me about in the morning, apart from the Wednesday round update, as he needed to have me verbally consent to the injection. I'm not sure if this was directed as part of the followup appointment Paul had yesterday; Dr. Robitaille mentioned that Paul is scheduled for an appointment with Dr. Schmidt at HCMC on October 19 concerning this, so I'm uncertain if the order for the steroid injection came from him. In any case, Dr. Robitaille was going to administer it. The hope is that this will break the cycle of pain that Paul is experiencing by reducing the inflammation so he has more freedom of movement and will be better able to participate in therapy that involves moving his arm and shoulder.

Dr. Robitaille explained that it's likely that Paul would have some relief for a couple hours after the injection, then some pain again before the steroid "kicks in", likely in two to four days. At that point it would begin to reduce the inflammation, which would give relief that hopefully would last longer!

Back to the "rounds" update: Paul has had some gains in the speech therapy piece as well. Up till today he'd been refusing "meals"--the pureed or liquid that they were offering. Dr. Robitaille had mentioned this earlier and clarified shortly after the first conversation that it appeared that it was cognition that possibly explained Paul's lack of appetite. He said that Paul was having therapeutic trialing for food, that it was only with a speech therapist, and that only a nurse could give him small sips of water. Otherwise he was still NPO (I think that's the correct term). As of today, though, Paul indicated willingness to try, so the speech therapist will be trying an altered oral diet (ie, thin liquids). They'll supplement with tube feeding as necessary.

Following a two-step command is another part of speech therapy, and Paul is at about 80% accuracy on this. The speech therapist noted some depressive affect and also confusion at times; the confusion in particular may interfere with his ability to follow commands.

Occupational therapy was the one where there were no noticeable gains from last week. Paul is still at mod-max assistance for lower body dressing and minimal assistance for upper body. They'd done an Allen Cognitive Level (ACL) test, which assesses attention, problem solving, and learning. It is scored on a scale from one to six, one being complete supervision and six being minimal supervision. This has to do with how much supervision he would need at home, so it's not something that is hugely significant at this point, since he's a good ways from coming home! His score was 3.2, but Ann explained that Paul couldn't do the visual part of the test because of his vision limitations, so this score is skewed.

On a personal note, regarding Paul's progress: The children and I stopped briefly yesterday to deliver some comfortable clothes (shorts, teeshirts, a pair of sweatpants) for him, per Bethesda's request. Samuel was telling his daddy that he was getting better, and I loved Paul's response, which was essentially, "How could I do anything but get better with a son like you?" I fear I am misstating it some, but that was the intent, and it was so Paul! That's the first time since the accident that he's made such a statement in my hearing, and it reaffirmed my perception that my Paul is there and is coming back slowly. 

Wednesday, September 28, 2011 3:13 PM, CDT

I've gone back and forth on what to say here about the rehab/insurance matter. Last night after a couple days of mulling it over and talking about it with a group of friends, and then mulling on it more...God brought to mind "You have not because you ask not." All right, Lord, I get the message. So, I am boldly (and nervously) asking for prayer that God would do a mighty work and bring Paul to the point where he is ready to go straight to acute rehab from Bethesda!

If God impresses you to join in praying this, please do. If he directs your prayers in other ways, follow his leading. I don't know what he will do, but I do know that the message here for me was ASK. 

Monday, September 26, 2011 4:47 PM, CDT 

Not long ago I had a conversation with Melissa, a financial social worker at Bethesda. At issue is how to pay for a skilled nursing facility (aka sub-acute rehab/care), if that is the level of care Paul needs once he is ready for discharge from Bethesda. BCBS Federal, our insurance, will cover acute rehab, but not sub-acute, so our options are medical assistance or private pay.

Melissa is sending me a list of names of attorneys who specialize in medical assistance planning. Since we have assets this seemed to her the best course to see what we can do. It's not a route I want to go, but I will do what is necessary and trust God to work it out. Till I have the list any action on this point will wait; Melissa recommended checking to see if possibly Paul would have any benefits through the VA, as he was in the navy and naval reserve. So that is on the agenda, too.

All this assumes that Paul will not be able to go straight from Bethesda to an acute rehab. If that were the case our insurance would cover it, and this would be moot. As of now, it doesn't seem that he will progress to the point acute rehab is right for him, that he will need the sub-acute level. Please pray that this work out; I see these two options, but I will not limit God to what I see. 

Monday, September 26, 2011 12:35 PM, CDT

Mostly me

There is a part of me that says it's selfish to go on about how I'm feeling or how I'm doing in all this, when it's Paul who was hurt and who is slowly working his way back. There's another part of me that says it's not, and I know that is the truth. The reality is he and I are one....

This is coming from this weekend, and it seems the best way to approach it is to simply walk through the pieces and put them together as I go.

Saturday morning looked to be a good time to pay a visit to Paul, when I could stay longer since Emily and Samuel would be able to remain at home with Halley. Then Halley was out for the morning and early afternoon, so I pushed my visit back till the afternoon. I had planned and hoped to linger, to be with him, be quiet, enjoy being there and let him (hopefully) simply enjoy my presence. When I have gone other times, usually with Emily and Samuel in tow, I end up staying only fifteen to twenty minutes. Maybe that's enough, since he does need rest as part of this healing process--enough for him, but I ache for more. Anyway, I was planning to read aloud to him from the Bible, to do my personal reading in his ear. I thought it would be something he'd welcome, and he did, yet because I happened to arrive just after he'd had a therapy session he was very tired (and in fact had not participated as much in the therapy because he was tired). I did read for something like twenty minutes, and he did listen as he dozed in and out, but eventually he had reached his limit and needed quiet.

I'm telling myself that it was the timing, that perhaps if I had gone in the morning as originally expected he'd have been more awake and interactive. Between the weariness and some pain (possibly muscle tension, but I'm not sure)--well, he was glad to see me, but not up to much interaction. I left feeling hurt and let down, and it took mulling it over the rest of Saturday and more on Sunday as I journalled to see some of the reasons.

The biggest thing, I think, was the perception I had of how diminished he is right now. I'm aching for my partner, for the person who listens to me ramble and muddle my way through something, who cares and asks questions and is as concerned about many of these things as I am (me, our children, other issues), and who has wise things to say, things that help me along the way. Paul is just not there yet, and will not be for quite a while. If I were to begin sharing on that level it would quickly become overwhelming for him, and it would be frustrating for me because he wouldn't be able to respond at that level. At this point I try to keep things concrete, factual, easier for him to comprehend. That's his need, and that's important; the hard part for me is how alone I feel, unable to share with him in that deeper way.

All that said, I understand that this is the place we are and that he's frustrated too by his limitations as he slowly recovers from the TBI (which he doesn't fully understand!). So I choose to bear through this, choose to accept that this is where Paul is and I need to walk beside him, accept where he is and continue to encourage him, remind him of truth and how much progress he's made, that it's good, he is improving. And I do, at that intellectual level. Emotionally it's a similar decision, to be with him, to hang on, to trust God to be for me what Paul cannot be at this time. And that's harder--harder in general, and especially challenging this weekend.

It's generally harder, for one thing, because of the unknowns of how long this marathon will last. Paul will be changed after this, though just how different he will be remains to be seen. I will be changed, too, but more in how the decisions I've struggled through have affected me. Will I be harder, softer, more flexible, more rigid, more or less trusting, more or less open? The list could go on and on, and one thing I fear the most is that over these weeks and months the emotions and experiences that I walk with and through will make me someone Paul isn't acquainted with. He will hear of things, but it won't be the same as going through it with me. We will need to reestablish our whole relationship as we, in effect, meet again on the other side of all this.

Realizing all this contributed to making this particular weekend more challenging. Yesterday a special young lady stood before friends and family to take the vows that joined her life to that of a wonderful young man. Paul was to have attended the wedding with me, but obviously he was not able to do so. I thought I had made peace with that reality, and I was at peace till Saturday and the perception of Paul being diminished right now. So I took a deep breath and faced up, as best I could, to the knowledge that it would be painful to watch Lydia and Sean make and take their wedding vows while my beloved husband was not at my side. And that I would not let it sour my glad participation in their special day!

God granted that it was not as painful as I had feared it would be. Indeed, he touched me with truth as I listened to the wedding meditation and was reminded of the vows and commitment I and Paul had made to one another thirteen years and two months (and now one day) ago. That was a precious gift. God promised that as long as the earth remains so shall seedtime and harvest, summer and winter, day and night...I hold to that, and to Habakkuk 3:17-18: "Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food; the flock be cut off from teh fold and there be no herd in the stalls, YET I WILL REJOICE IN THE LORD; I WILL TAKE JOY IN THE GOD OF MY SALVATION."

This is a hard time, hard for Paul in one way, hard for me in another. Yet none of this changes the reality that God is in control, and he will do this well. I cannot live in the future and fret about what it will be like, I have to live here, now, day by day loving Paul as he is, encouraging him, trusting God.

So that is the "me" aspect of this update. I'd like to close with some thoughts to guide your prayers. First, I recognized last week that one of the likely reasons for Paul's frustration is that he sees how far short he falls from where he was prior to the accident. I realized that he doesn't have the same perspective as I, that he cannot see how far he has come since the accident. He just sees that gap, and he wants to close it in one step. Please pray that he would let go of that and have eyes to see the small steps from one day to the next, which will add up to big pieces of progress.

Pray that he would believe that the nursing staff at Bethesda know what they are doing, and they are doing things that are good and will help him recover. On Saturday, before he got back into bed the nurse helped him walk into the bathroom (to use the facilities), and then helped him to the bed, and let him "find" it and settle himself. Those are steps in a good direction. A week ago he wasn't there!

On a "this week" note, Paul has several appointments at HCMC. Two are tomorrow, a neurosurgery followup at 10:00 and the removal of the IVC (a filter that was put in place to catch any clots) at 1:00. The other two are on Friday, with ENT at 10:30 and in the dental clinic at 1:00. He will be transported from and to Bethesda both days, and will "hang out" at HCMC between the appointments. I'm waiting to get more information about the appointments on Friday; the ones tomorrow are more straightforward. The IVC removal will literally take moments, and the neurosurgery followup is with HCMC since they saw him at the outset. They will write any followup orders to transmit back to Bethesda for Paul, for his rehab and treatment. 

Wednesday, September 21, 2011 9:11 PM, CDT

Three-part update

Tonight, a three-part update.

Many tidbits for Paul's condition, mostly good things. This is according to Ann, who called me to give an overview of things from their mid-week discussion of his conditon and progress. His behaviors are improving, he is easier to redirect, and he is becoming more participatory in therapy. At the same time he is somewhat lethargic during therapy, so they are trying to figure out what that is all about. Ann reported that he walked 300 feet with standby/contact guard assist; that means the physical therapist is nearby to watch, or has hold of his elbow, while he walks. He also did 3 stairs holding the rail, with contact guard assist. His balance is still unsteady, so he remains a "fall risk".

I learned that his occupational therapy mostly involves personal grooming and hygiene, and dressing. For grooming and hygiene Paul washes his face and brushes his teeth; the therapist stands by and cues him, and he does what is necessary. Putting on a shirt/top is also done with the therapist standing by, but putting on pajama pants or socks requires moderate to maximum assistance.

His speech therapy centers on two main areas: they are trialing therapeutic feeding (watching for aspiration problems), and are trying to assess cognition. Paul sipped some water today with no aspiration symptoms; yesterday they tried a pureed diet and he exhibited no aspiration symptoms there either, but had decreased interest--which may have been simply that he didn't care for the taste! They've not really been able to get valid cognition scores, which may be a reflection of the vision and hearing limitations. That's sort of a "until he can see we can't accurately assess cognition, but until he can think more clearly to tell us what he does and doesn't see we won't know how much is vision and how much is thinking", or the same with hearing instead of vision.

So, at present, the plan is to continue the therapies as they are, and continue the net bed till his impulsivity and balance issues are under control. Ann explained to me that that is presently what holds him at Bethesda, his need for this level of care till his behavior is under his control and his balance is steady. What sort of care will best suit and serve him is being considered, which is part two.

Ideally, Paul would go from Bethesda to an acute inpatient rehab...but that requires him to make a huge amount of progress, because it is intense rehab--three hours of therapy a day. Right now it doesn't appear that he will be to such a point at the time he's ready to move on from Bethesda, which presents a dilemma in that BCBS Federal covers acute rehab but does NOT cover sub-acute or skilled nursing care, which it seems is where he will need to be for a time at least. I don't know if he would do sub-acute and then acute inpatient--that's one piece I didn't ask as Ann and I talked today. Over the next few days I will be talking with someone about financial possibilities, trying to figure out the best route to go with this. Ann spoke of a couple options, but the financial social worker will be a better resource for this.

The third part of this update is simply to say that I am trying to get organized enough to lay out practical needs. God has graciously coordinated some things, and that is wonderful! I hope to have a list soon and get the information out via the care calendar, and possibly word of mouth. Please pray that I do this soon; it's easy to ignore it and that won't help get things done that need doing!

Pray, too, for the next step to come clear. Pray that Paul make good and steady progress, and that we find the best way to cover his need for future therapy and care, what is best for him and meets his needs the best.

Pray, too, that I would have grace to retell this story as needed. With activities starting up (at church, mostly) some people are finding out about this for the first time and are asking, assuring me of their prayers and concern. It can be hard to tell it two or three times in the course of one evening, and easy to quickly point people to here rather than give the time and effort to speak it out. Please know that if I shy away from talking it's not that I don't want to talk to you, it's probably more that I have talked so much I am wrung out and want to retreat. Or that I am simply overwhelmed at the moment with handling everything and again want to retreat. 

Sunday, September 18, 2011 9:41 PM, CDT

I hadn't even thought about it till a friend inquired: Today marks one month since Paul's accident. Really? It's been a month since we were swept onto this journey? In some ways it seems that it's been longer than a month. I remember feeling this way after the first week: It's been a week since his accident? It seems that it's been longer....

I relish seeing the small steps that indicate to me Paul is making slow but steady progress. He calls me (has the nurse dial the phone and hand it to him when I answer) every day or two, just for a short conversation. The first time I had to tell him "This is your wife," as telling him my name didn't click with him. Then the next couple times I could say my name and he "got" it, but I had to speak first when he'd come on the phone. Today, though, when he called HE said, "Well, hello." That was a first, and was a joy to me.

That brief conversation confirmed for me one major role I will play is, as I surmised earlier, giving him reassurance that he is doing well, he will recover. He puts more weight on what I say than on what the staff at Bethesda say--because he knows me, has confidence in me. He doesn't have that level of trust in them. He expressed doubt that they're giving him good advice, but he seemed a bit more accepting of my statement that they do know what they're doing. Pray he would recognize that they are doing good things, they are working to help him recover. He cannot see how far he has come, and it is frustrating for him to see how far he is from where he was before, what he was capable of prior to the accident. So pray also that he will be patient with himself, not stressed by the huge gap between where he is and where he wants to be. Pray he'd see the little steps forward each day, and how those little steps add up to big gains over time.

On Friday I spoke at some length with Dr. Robitaille, who is a rehab doctor. He told me that he'd requested an assessment by Ophthamology, and that was done. They are using some drops and ointment to help with lubrication for his eyes; his left eyelid in particular doesn't close completely and hence his blinking doesn't "wash" his eye and keep it moist as well as normal. That will continue. As far as glasses, because of the accident and the damage to his ear and because right now it's difficult to evaluate and determine his prescription Dr. Robitaille recommended seeing if I could have his account credited for the glasses he'd ordered just before the accident, and have them hold the frames till we are able to do a followup with a neuro-ophthamalogist. I am going to have to review why that specialty is necessary; my notes from the conversation don't detail that! He gave me a name, but encouraged me to check with my ophthamalogist to see if they have one on staff at that clinic. So this is something on the agenda for this coming week.

Perhaps the biggest thing that is coming up over the next week or two is looking at what is next. How long will Paul remain at Bethesda? They'd put a target date of September 19 for moving him on, depending on how he is doing. He's not ready to transfer elsewhere, so my guess is that he'll be there at least till the end of the month, but that's just my guess. I expect to have a clearer idea later this week, after they've done an update (on Wednesday, which is when the staff and social worker and whoever) gather to go over patient cases. The social worker for the unit will work with the staff and with me as we sort this out. I am not clear on all the details; what I somewhat understand is that our insurance doesn't cover certain kinds of care facilities, so that has to be evaluated along with what he needs and how to deal with this figured out. It is, I admit, scary to think that the facility he needs might not be covered; what does that mean for his future treatment? Will he get the best care for him? I am trying to cast my apprehension on the Lord, who is more than able to carry it, and trust that he will see to it that the services Paul needs will be covered, that all this will work out perfectly. Your prayers to that end will be greatly appreciated!

Dr. Robitaille shared with me that he, Dr. Scanlon, and other Bethesda staff are impressed with how well I am handling all this--how well I am coping with the stress, the uncertainty, the ups and downs, and all with keeping home and children running smoothly, AND homeschooling! That was sweet to hear, even though I sort of laughed it off, or tried to, because certainly there are days when I look at me and how things are going--days when I am NOT coping as well, when the children are behaving badly, when I am losing it, when I feel overwhelmed. At the same time I recognized that it is God's grace that has enabled me to bear up through all this, and that's what they are seeing, and I accepted his commendation as a gift to encourage me when I am feeling overwhelmed and not doing so well (in my opinion). God is so good to give those gifts when we need them!

Slowly our routine is settling out. I made some adjustments to our daily school schedule, which seemed to smooth out some of the rocky spots from our first week. Various activities are starting up and that is going to trigger additional adjustments as I see how things fit together. I have accepted that homeschool is going to be on a slower schedule this year. I am more relaxed this year than I have been in past years; if we don't get all the subjects each day that I have blocked on the daily schedule I let it go. In essence I've chucked the "these lessons this week to stay on track" and simply do what is done each day, and pick up wherever the next time. I know we'll cover all the ground, we will go further into the summer than originally planned, but I've been wanting to go to year-round homeschooling and this is helping in that direction!

As I studied our weekly routine I recognized that, under present circumstances, it works best for me to plan to visit Paul on certain days of the week, when I either can bring Emily and Samuel with me (which I want to do about once a week), have them with someone, or leave them home when Halley is around to be responsible. That has come out to be Saturday, Sunday, Monday, and Tuesday. I'm mentioning that not to say no one else should visit on those days; I will most likely visit during the afternoon most days, or in the morning on Saturday. So please feel free to visit in the evening those days, or any day the rest of the week! I am very glad to know that others are visiting, it comforts me that friends are stopping in and reassuring him by their presence that he is loved and cared for, people are thinking of him and praying, and helping us out.

Related to that, it is a blessing to me to know who has stopped, so please, if you remember and would, take a moment to sign your name and the date in the notebook I left in Paul's room. Messages are encouraging, but don't feel that you must write a lot.

I am feeling more overwhelmed and somewhat lost now, facing this coming week. Part of it is the "what's coming next" that I've mentioned. Part of it, I believe, is the waiting and trying to get paperwork tended to, some of which is stalled as I wait for the accident report to be released. Part of it is also knowing that there are things that need to be done, things that need Paul's signature and he can't do that now, so I have to work through that and what to do. Part of it is coming into and through another season of facing the "How are you doing" questions--not a bad thing, it's simply ramped up a bit as activities are starting and I encounter people who've been following this saga and now are seeing me face-to-face for the first time since it started, so I am answering the questions and that can be wearing emotionally. And part of it is dealing with the pain that I am experiencing subsequent to foot surgery, which has increased of late and I'm not sure why, and am hesitant to pursue it, since it feels like a bit too much to cope with...but ... and I find myself going in circles! All that is to say, without saying it, that I know there are needs out there, I want to share them, but I am having a hard time getting a grip on them to share with you. I am trying and trusting. Pray for me, that I would see and share and watch God work to meet all our needs, and so often through you! 

Thursday, September 15, 2011 9:24 PM, CDT

Tonight I feel that I don't have a lot of new information to share regarding Paul's condition. He continues to improve slowly, continues to be frustrated and agitated, which is part of the healing process. I think this week I have been more emotionally worn and consequently have been inclined to withdraw a bit. It may simply be coping with paperwork, waiting for details about the accident so I can finish some of the paperwork, feeling the strain of having to deal with issues that normally I could dump on Paul (like car maintenance, fixing Samuel's bike, dealing with the computer when it acts wacky--two of those I handed off to Halley, he's done one already)...I could go on and on.

Last night I had a call from Bethesda that Paul had taken a tumble with a chair. They had had him up in a chair, belted in, and per usual Paul was moving around a lot (I don't know if he knows how to hold still!), and somehow tipped the chair over backwards. He was not hurt--no bruises, nothing evident. The nurse told me that they would be doing neuro checks, but at the time nothing was amiss. Today I had a message that they'd done a CT scan as a precaution, and it showed nothing, no new bleeding or anything, so all is fine in that regard. Just a few minutes ago I spoke with his nurse, who said that he had a good day and was less agitated than he had been the last couple days.

A further good note: Up through yesterday they had Paul walking a bit, with support from a couple nurses. So, as always, he is improving, albeit slowly; he's moving in a good direction.

One other piece of information I had in the message earlier today was that Opthamalogy has been asked to do an assessment, to see what could be done to help with his vision. I did bring a pair of glasses in for him, an old pair, and I am sure that that prescription is NOT right for him. He'd just ordered new glasses, which arrived at the eyewear place the day after his accident, so obviously he hasn't been able to get those. And it may well be that that prescription is wrong now, following the accident. Please pray that they are able to come up with something that will work for Paul, to improve his ability to see, which could go a long ways toward helping him manage better.

Related to that, somewhat, Emily has been busy drawing polygons and coloring them (she's doing hands-on geometry this year for math and greatly enjoys this activity!), then cutting them out. She wants to send a bunch of them to Paul to decorate his room, so he has something colorful to look at and is constantly reminded of her and the fact that we love him! It'd be good if he were able to see better, to see these gifts from his daughter.

I've alluded to feeling overwhelmed and emotionally worn. Pray for me as I work through this. It's easy and appealing to fritter away time in mindless activity, because there is so much weight on my shoulders now. Often it seems more than I can think through, to figure out what I need, what would be most helpful, so I give way to playing games or reading or other things rather than picking up my journal and sorting my way through things, to find the insight to make wise and right decisions, to communicate needs so people know and can minister 

Tuesday, September 13, 2011 9:30 PM, CDT

It was sweet to talk to Paul on the phone today and hear him entreat God to bless us--me, Halley, Emily, Samuel. For all the turmoil and confusion in his mind right now this sort of comment assures me that our Paul is there, his spirit of love and care comes through.

The nurse, with whom I spoke for several minutes after talking to Paul, told me that he'd not slept last night. She felt it was confusion that kept him from sleeping. She told me as well that they'd had him up in a chair, safely belted in, out near the nurses' station so they could keep an eye on him, most of the morning and early afternoon. As long as that is the case they are removing the mitts, trying to give him more freedom. I had prayed that they would be given wisdom about this, as I felt that the constant restraint might be a big factor in the frustration Paul feels. So this was good to hear.

I would like to speak my heart again, to give an update on how I and the children are doing with all this, but for tonight my thoughts are too jumbled to try to share here. Paul's continued progress, as wonderful as it is, also puts strain on me; it's very hard to watch him struggle through this. I find myself wanting to pull away, to protect myself from the pain of seeing him hurting and confused, yet I am the one person he turns to for reassurance. I cannot leave him to wade this alone. God be praised, He gives me the strength to go, to be gentle and comforting, reassuring. At the same time I am keenly aware that my need to care for myself is great--that sounds selfish, and isn't meant to. I mean more that I must find ways to tend to my well-being, that I may be able to help him and keep home and children healthy and peaceful.

I am rambling here, so I shall simply say tonight to please continue to pray for Paul and for me, for our children. Pray I would continue to find the right balance for us all, and for trusting God to provide ALL our needs. Pray I would share what we need, to let you know what would help and bless us. And even when I do not know what to share, what I or Paul or the children need, pray that God would provide it and be glorified in the process! 

Monday, September 12, 2011 9:49 PM, CDT

Oh, dear. Bethesda just called to let me know that due to Paul having broken his wrist restraints...he got out of bed and was walking around (I think in his room, but I'm not sure of that detail), and is drowsy...they made the decision to put him in a net, essentially a canopy that zips around the bed so he cannot get out on his own, for his safety.

Please be praying that Paul will steadily progress in his recovery so he understands that he cannot and should not be getting up and moving around on his own, pulling at IVs and such, that he would begin to understand what has happened, why he's there, why they are doing things to help which seem wrong or weird to him. Again, this is such a hard stage, and we all need much grace: he to cope with his frustration and the restraints and limits to his ability to do things, and me to watch him struggle through this time, to feel helpless and worried, and understand why he's so frustrated. I ache for him, that these things are necessary, and pray that we quickly get through this stage. Pray for peace through it, however long it takes, and for wisdom for the staff at Bethesda, to wisely decide what to do to help him continue to recover. 

Monday, September 12, 2011 4:50 PM, CDT

An added note about visiting Paul now that he is on fourth floor: Not only will you need to get someone to get you on the elevator to go up (they have to use a key to access the floor), you must buzz the door to get in...once the elevator is closed behind you and gone. And when you are ready to leave they must open the door to get out to the elevator lobby, as well as use a key to get the elevator. This is because, and I quote their sign, some patients try to elope.

Paul was glad to see Emily and Samuel--glad to know they still care for him. It's still overwhelming for them, so I will not be pressing them to visit often, but will try to have them come once every week to two weeks. I believe it's good for them to see Paul, and that it's good for him to see them. Pray that they will be willing to come every ten days or so. I anticipate that as Paul recovers and is more lucid, more able to interact without having to think so hard about every detail, it will become easier for Emily and Samuel to visit. It's simply hard now, this is a hard time, so I will take it slowly on their visiting. 

Saturday, September 10, 2011 10:48 PM, CDT

Paul's "big bit" of progress, in my opinion, today was his remark, "I wish I could see more clearly." I explained that his glasses had been damaged during the accident, but I would look around at home and see if I could find another pair, though I'm not sure where they are. I found a pair, but they don't look like the ones I recall, so these may be an older prescription. He was grateful that I would look and take care of this for him!

It was also very sweet to have him rest his head against my shoulder for a few minutes, and to hear him say, "Thank you for loving me." Quite honestly, I feel I should be thanking him for loving me! He asked again why he's in the hospital, and finished up that part of our conversation with, "Very weird," but he couldn't quite tell me what was very weird. He knows he's missing words, that he wants to say things but cannot quite get them out, cannot think of the words he needs.

I didn't have an opportunity to confirm it with the nurse, but by the appearance of things, it's possible that the trach has been removed: He had a dressing across his neck where the trach is (was), and I can't imagine that that would be the case if the trach was still in place. I hope to confirm it tomorrow, and if it's so it 1) is sooner than I anticipated, and 2) may mean that Paul might be moving to another floor at Bethesda. Once I know more I'll update! 

Friday, September 9, 2011 11:44 AM, CDT

Surprise for the day

Or should I say I'll mark this as a red-letter day? A short time ago, as I was in the middle of a math lesson with Samuel, the phone rang. Normally during school time I don't answer; I want the children to know that I place high priority on the task at hand, and I figure whoever is calling will leave a message if they really want to talk to me, and I'll respond during a break. Well, seconds after the phone stopped my cell phone began ringing. "All right, someone REALLY wants to get hold of me," was my thought, so I checked to see who it was. Bethesda. All right, this I answer!

I had to ask the caller to repeat herself; she said (again), "Your husband wants to talk to you." What?! When he came on the line he asked who I was, and seemed a bit confused when I said my name, till I clarified, "This is your wife." He wanted to know where he was, what had happened, so I explained as best and simply as I could that he'd been riding his bike to work three weeks ago (I doubt the timeframe made any sense to him) and had been hit by a van. He fell off his bike and hit his head really hard, so he's in the hospital while his head heals. I told him that he would come home once he was better--tried not to give a time for that, tried to imply he might have to stay in the hospital or somewhere for a while, but eventually he'd come home. That seemed to satisfy him, though the nurse mentioned he seemed restless when she came back on the line to make sure we were done talking. I presume Paul had turned from the phone once I said that I was doing school with the children and couldn't talk much longer. I assured him that I would call again later, so it appears that when I call now I will also need to talk to him.

This also suggests to me that visits, people who will talk with him and help him fill in the gaps, understand what happened and why he's in the hospital, will be very beneficial. I am trying to get a handle on his therapy schedule to make it easier for people to know what times are good to visit. Bethesda's visiting hours are 11 a.m. to 8:30 p.m., but Paul does have therapy each day. It seems that after 2 p.m. is fairly safe, given his schedule from yesterday. So if you are able, visits will be a blessing! I'll be trying to work my schedule to visit more regularly now, too, but I'm still working on getting our school rhythm and routine down, so I'm not sure where it'll best fit, and I have other logistics to factor in. Paul's need is a big thing, it's a matter finding the balance that works for everyone. Please pray me through this! 

Thursday, September 8, 2011 9:42 PM, CDT
 

* Paul is being weaned off the trach. All this means is that every few days (I don't know exactly how often, or what factors are considered in the decision) they downsize the trach. From what I observed, it had been downsized once before he came to Bethesda and has been done once since. As of yesterday he no longer had the trach collar (which was a "bowl" placed over the trach, to ensure that he was getting adequate oxygen), so that's another good step. Eventually it'll be removed altogether, and at that point, depending on where he is in his recovery, he may be moved either to another floor at Bethesda or to some other facility based on what would serve his needs best. Another one of those "unknown at this point" matters!

* Dr. Scanlon reported that Paul was agitated, and made the decision to cease the Ritalin, which had been used to help him wake up. It has occurred to me that perhaps part of his agitation comes from his wanting to communicate things that he's not able to manage yet. He has to work hard to process things, and then trying to get the words he needs to respond...he's not quite there yet. He will say a phrase, like "I wish" or "so much", but can't get the rest of his thought out in words.

* Char, today's nurse, told me that Paul has an hour and a half of therapy each day: speech (in his room), and occupational and physical therapy out of the room. If today was any guide, his therapy time is early afternoon. She also told me that, at the time of the call, he was resting quietly. He's often restless, and again, some of that is simply Paul, and some of it may stem from frustration.

Please keep praying for Paul's ability to communicate, to process and respond to information and questions. Pray for his ability to participate in the therapy.

On the "how we're doing" front, please pray for me and the younger two as we work out a homeschooling routine. We've not done as well this week as I had hoped, so we are somewhat behind in all areas. I'm trying not to obsess about it, I knew that we would be slower this year under the circumstances, and I've been finding that our overall schedule (what we do when) needs to be juggled around to flow more smoothly. I'm hoping and praying that those adjustments will help next week go better, and that we'll get all the subjects into best order. This week at least one subject each day has slipped out the back door, so I'm trying to catch them all before they can escape! It may, realistically, be a couple weeks yet before all the bugs are worked out, since not all activities have started (such as Wednesday church and Cub Scouts, and MOMS and White Cross). I do appreciate the various offers of help with Emily and Samuel for some of those times when it's needed; I'm still figuring out what will work best, please know I'm not ignoring the offers! It takes me a while longer than usual to sort through things.

Monday, September 5, 2011 3:59 PM, CDT
 

Wow. I was astounded by the steps forward Paul has taken just since Saturday. He now has a speaking tube fitted to the trach, so he is able to speak--and speak he does! It's still hard, he still searches for words, and cannot always come up with the words he wants, so he resorts to nodding. Simply hearing his voice again after two and a half weeks was wonderful! He said, "Help," several times, but it's somewhat of a guessing game as to what he wants or needs help with.

In addition he is much more alert than he was Saturday. I could see it in the clearness of his eyes, and in his desire to communicate. Dr. Brombach, who is covering for Dr. Scanlon this weekend, stopped in while I was there. He reminded me that they'd put Paul on a stimulant (Ritalin) to help him wake up, and they'll continue that, plus will be weaning him from the narcotic-based pain relief, which will also help him to become more alert. When pain medication is needed they'll use tylenol or advil. He's nearly done with the antibiotic, and the pneumonia is cleared...which is good, as he managed to get off one of his mitts and pulled out the pic line they'd put in before he left HCMC. They decided not to do another pic line now, they simply put in another IV line for the antibiotic. I told him before I left to stop pulling things out; he nodded acquiesence, so we'll see how long he remembers that promise!

Deb, his nurse for the day, told me that earlier she had explained to him what his injuries were. Somehow he'd made it clear he wanted to know. When she finished he told her, "Thank you." As with my admonition to stop pulling things out, we'll see how long he remembers what she said. Most likely we will need to tell him things several times before he really keeps it in mind for any length of time. They've told him not to pull at things, he'll nod, and then he begins to pull at them again, because he's simply not able to keep his agreement in mind.

All in all, this was a very encouraging visit! Deb told me that earlier he'd also clearly given our children's ages (I'd left a family portrait in his room, so they used that as a prompt), and had them right. This is so good, that he remembers things. He does tire quickly; I'm sure the strain it is for him to listen (that was another thing he said, and while it took me a moment to interpret it, I did comprehend!) and process so he can respond is exhausting. Deb said that yes, he does seem to doze off quickly, but he is more and more able to interact. That has been a constant prayer, and it's joy to see it being answered day by day.

There is still a long road ahead to recovery, to be sure. The progress in just one week, since he was moved to Bethesda, is incredible. On Saturday I'd seen a note on the board in his room that they're targeting September 19 as his release date (to some sort of further rehab, I imagine) and thought, "That's only three weeks away." I couldn't see him being far enough along for discharge, but after today, well, my, maybe yes. Considering where he was just two and a half weeks ago--it's not such a wild idea! And I heard that as slow as this seems to me, Paul is doing very well.

Tomorrow I and Emily and Samuel will begin our homeschool year. This will impact when I am able to get to Bethesda to visit Paul. I am waiting to learn what his regular routine will be, when his therapy sessions are, when they do other things (nursing care, comfort care, getting him in the chair, and so on), so that I will be able to look at where it'll work best to fit our schedules together and visit on an every other day or daily basis. Eventually, as he wakes up and is able to interact and participate, I will want to stop in each day, perhaps even be there during therapy sessions so I and the children can learn what he needs to do and help with it. I laughed with Deb that if they needed a 60 pound weight Samuel might suffice! I doubt they'll need that immediately, however. Much will depend on his schedule and how it best works to mesh the two. It might be that we bring school with us when we visit and he listens in, which could be helpful for his mental progress. It will unfold as we go, and this is likely to continue to be an area where I will most need help--caring for my children when I visit Paul. Even when it's suitable for them to accompany me there may be times it's best for me to go alone, and then I'd need help.

During this visit they got Paul up in the chair again, and Paul became very fidgety again. I'll find out later, when I call to check on how the rest of the day went, but it appeared to Deb that one reason for his fidgeting in the chair was that the footrests were too high, so he's not comfortable. She left a message for someone to help with that adjustment, as she didn't have a screwdriver or whatever tool she needed. Paul was shifting his feet off the footrests, which hinted at the problem, and was also stretching, pressing against them, also suggesting that's the issue.

I told Paul several times how much I loved seeing this progress--that he's talking, interacting, responding! It was very sweet at one moment--I had leaned toward him, with my hands on his thighs, as I spoke, and he reached toward me. He tried to hold my hand, too, which is hard with the mitts on. I'm still smiling, thinking of how he nodded when I admonished him, "Don't pull anything else out!" I even told him I'd be checking to see if he was behaving himself. Maybe that will stick a bit longer than the nurse's telling him not to pull things out.

Saturday, September 3, 2011 12:57 PM, CDT
 

I took advantage of Saturday morning and ran (well, drove) over to visit Paul for about 40 minutes. He was up in a chair, rather fidgety when I arrived, increasingly so through the visit--so finally he managed to wiggle the chair just enough to shift it away from the small dresser (where the aide had braced it), so he ended up lying flat in the chair! This was after he'd fidgeted and squirmed and shifted around, and after I'd asked him, "Do you want to get back on your bed?", to which he nodded a distinct "yes." At that point I went out again to get help, because I couldn't handle moving him myself! All I could do was keep telling him to wait, and he was becoming quite impatient--swinging his leg(s) over the arm of the chair, drumming on the armrest--while we waited. He'd also managed to pull off one of the boxer mitts that he's wearing to prevent his pulling at tubes and things; I laughed eventually with the nurse that he'd done so in order to hold my hand...because he did take my hand in his unmitted one for a moment--a very sweet moment!

I left a fat little notebook on the window ledge today. If you would, when you visit, please take a moment to write your name and the date, and whatever else you wish (what you talked about with Paul, how he responded, things like that). That will mean a lot to me as I stop in, to know who's visited and how it went, and eventually it'll be something Paul can read over to realize how many people came, how many people prayed for him during this

Friday, September 2, 2011 10:29 PM, CDT
 

It was cheering to talk to Paul's nurse, Cindy, this evening. She's been his nurse several nights now, and she relayed some encouraging things as we talked: Paul will nod his head or give a "thumbs-up" response, though after a bit he becomes tired and sort of shuts off--too much for him to handle. As she put it, he's there, and he is responding as much as he's able. Thank you, everyone who visits, for engaging him and giving him questions he can answer with a nod or a thumbs-up!

Cindy told me that the other night she was telling Paul that I (his wife) had called, and he very quickly turned his head, indicating great interest in that news! Hearing that gave me great joy. I imagine that she told him this evening that I had called again; she was just about to go in and give him his evening medication, and would mention that Jan had called. I will be interested to hear what his reaction was.

Friday, September 2, 2011 4:25 PM, CDT
How am I doing?

That is a question I am asked now and then, along with "How are the kids doing?" My answer seems to depend on the moment and on who is asking. Overall, we're doing well, yet when I let you look a little deeper it's clear that there is much going on in my heart and mind as I face this storm. Or marathon, to use an analogy I tapped before. So, what I want to do here today is let you see inside--see what I am thinking, what I'm feeling, how I and our children are managing through this, where I see needs in our life (and why they're needs) that you could perhaps meet.

What am I thinking and feeling? Two word pictures seem to capture this the best: "marathon mode" and "single parenting, version B". Having a traumatic brain injury just about guarantees a long haul to recovery; that was something that begin to come through right away. By day four I knew we were settling into what I called "marathon mode" as I came to terms with the reality that we were talking weeks and months for Paul's recovery, not days, and that there was/is no way of knowing exactly how long this marathon will last. One of the neurosurgeons at HCMC told me the first night to figure one to two weeks in the hospital, then sometime in rehab (there or elsewhere), and to anticipate at least a month before he could go back to work. (Aside, it appears now that it is more likely to be two months or more before he is cleared to return to work.) Even when Paul is fully awake, alert, able to interact and participate there will be therapy, be it inpatient or outpatient. How that will affect our daily life I cannot fully imagine; it is one of the unknowns in this journey that will be dealt with as it comes.

A few days after mentally settling into marathon mode I begain to grasp that the reality of our family's life is that I am, in effect, a single parent for the foreseeable future. I have done this before when Paul was at a postal school, so it's not a completely unfamiliar experience. I have found, though, that this is a very different experience in two key ways: Paul is not accessible, and I don't know when he will be back! In the past when he's been away I have been able to talk to him, fill him in on what's happening, get his input and perspective and advice before taking action on something. Right now he's not accessible that way. I could talk to him, but I won't get feedback that I could use to make a decision. Nor am I able to hand the decision-making over to him!

Besides missing his perspective I miss his taking care of the "little" things like vehicle maintenance and repair (could I use that today!), repairs around the house, computer problems, and so on. It isn't that I can't handle things or make decisions. I am capable, and God gives much grace, yet I miss Paul's perspective and his love and care for us. I wonder what he will think of my decisions, especially if my decision is not the one he'd have made. It's rather an unsettling spot to be in, and a struggle point for me.

As this experience continued (continues?) to unfold and its marathon-like quality became more and more apparent I was increasingly convinced that sticking as much as possible to our "norm" would be best for all of us, including Paul. I'd been preparing for homeschooling Emily and Samuel, had been getting Halley set for his junior year at Hope, was looking forwarding to the start of various activities at church for all of us. As I considered the big picture I realized that while Paul's needs will require me to adjust our routine from time to time it would be much healthier all around to hold to the things that matter to each one of us. Our homeschool schedule is blocked out and I am mentally prepared to rework it as need be when Paul's daily routine becomes clearer. Exactly how they'll mesh together I don't know yet, but I am confident that we can make it work and it will be good for all of us. The best explanation I can give here is that I am seeking balance. Paul's needs are huge and will direct a lot of our life, yet my needs and our children's needs have to be accommodated too, within reason.

How are we managing? As I indicated, we have some structure in place with school and other activities. Paul is at Bethesda, he'll have some sort of routine as the days go by, and we'll mesh our schedule with his. So that brings me to the final point: What needs do I see right now, where will help be most helpful? Having meals provided is a blessing, and the system set up for that is working well. Here are several other needs, mostly child-care related.

One Sunday a month Emily and I work in the church nursery. Because she is not twelve I have to work with her. Now, with Paul unavailable, I would like Samuel to be able to sit with a family or an adult during the service (while Emily and I are in the nursery). Perhaps it would be better to say I would like a family or an adult to sit next to Samuel and Halley, to oversee Samuel in particular during the service. This might include bringing him down to the nursery to meet me, or taking him up to his classroom where I would meet you.

One Wednesday a month, sometimes two (when there're five Wednesdays), I work in the church library. Having someone who could se Samuel to his class and bring him down to the library afterward would be a great help; Emily and Halley would be in their own groups and possibly not free when he needs to go to class or be picked up.

Someone to watch Emily and Samuel on Tuesday mornings is a big need. Normally Paul would be home so I could attend MOMS or White Cross while he kept them out of trouble. This is more necessary for MOMS mornings (first and third Tuesdays); there is no homeschool room, to my knowledge, and it would be difficult to have them tucked at the side of the room. I would be more distracted, and this ministry is one that will be a great blessing and encouragement for me during these weeks and months.

In like manner, as I figure out a good rhythm for visiting Paul--during the day seems that it will be more feasible--I will need someone to watch Emily and Samuel, as they wish to wait till Paul is able to interact and talk with them before they visit much, and Halley would be at school.

Also, there is one evening a month--my book club night--where having someone here with my children till Emily and Samuel go to bed would bless me mightily. I hate plunking them in front of a video every time!

These are the main and recurring times I know of that I need help with the children. There may be others from time to time, when an appointment comes up or something. Some of them are on the care calendar already, and the others will be added as I figure out the timeframes and such.

It is a little scary to share as openly as I have tried to do here. I have felt the tug to pretend, to not let my wishes and needs and reasoning be known, to try to manage on my own. It's vulnerable to put needs "out there" and not know how God will meet them. Part of me is saying I haven't done what I hoped to do here, which is to reveal areas of need that could be met, and inform your prayers for us. I believe I have done that, and I trust that God will care for every need I and Paul and our children have. He's done beautifully so far, and so often through some of you!

Wednesday, August 31, 2011 9:55 PM, CDT
 

Just talked to Paul's nurse for the night. He's settled down some since yesterday, but is still quite actively moving. For the immediate future the restraints will remain in place, as he is so active/restless that he'd be at risk of falling off the bed or pulling the trach tube out. The supposition is still that two moves in four or five days have stressed him, so I'm praying that as he becomes accustomed to Bethesda he'll regain the bit of ground he seems to have lost with the move from HCMC to Bethesda.

The nurse said that they are planning to get him up in a chair, similar to what they were doing at HCMC just before he was transferred, hopefully for one to two hours at a time. She remarked that often as they do that patients seem to do well and improve rather rapidly, and certainly it had seemed that Paul was responding well to being up in the pink chair at HCMC.

As with so many other updates, we simply still have to wait, and wait, and keep waiting. As Cindy (tonight's nurse) said, we're only 13 days out from his accident, which is soon with this sort of injury. That is hard to believe, it's just coming up on two weeks. It seems that it's been so much longer!

Tuesday, August 30, 2011 9:32 PM, CDT
 

Another brief update before I close this night: As a safety precaution, because Paul is very restless, moving around a lot, they've decided to use wrist restraints to keep him from rolling/crawling/whatever off the bed. The nurse who called to let me know they'd decided this said that she anticipates that as he becomes accustomed to Bethesda--it's a new place, new setting, new voices, everything--they'll be able to remove them. I realized as we talked that Paul has actually had two moves within the last four or five days, from SICU to regular surgical at HCMC, and then to Bethesda. He knows it's different, but he's not to where he can understand and refrain from doing things that could be harmful. Pray he'd settle quickly and become comfortable, begin responding to the staff there. And please continue to pray that he would keep moving in a good direction, that the swelling and all would continue to resolve and he'd become steadily more responsive and able to interact with us.

Tuesday, August 30, 2011 3:52 PM, CDT
 

Today I allowed Emily and Samuel to accompany me and see Paul--the first time they'd seen him since his accident. They handled it well, though Samuel was a little more scared than Emily. We stayed only for ten to fifteen minutes, and both of them have said they'd rather wait to visit again when he is awake and able to interact and talk with them, which is absolutely fine with me. I'm proud of them both for coming, and Paul seemed to respond to Samuel's voice (he was sleeping, as best I could tell, when we arrived, but Samuel's voice seemed to get through and rouse him enough that he opened his eyes).

During this brief visit I met Dr. Scanlon, who will be Paul's "family" doctor during his stay at Bethesda. There's a neurosurgeon who will see him, and other staff, but I didn't meet anyone else today, since it was so short. He was watching when Samuel was talking and remarked that Paul didn't want to hear his (Dr. Scanlon's) voice, but he certainly recognized his son's. He and I stepped to the door to talk for a few more minutes and let Emily and Samuel talk to their daddy, so I don't know how much more response there was to the children.

Paul will have a CT scan at Bethesda tomorrow, to give them their baseline for how he is. They will, of course, be able to compare it to HCMC's scans. I imagine over the next day or two Bethesda will get Paul's treatment orders and all sorted out and going. For today, it's mostly letting him get settled and relax after the upheaval of transferring him, let him become accustomed to all the new voices and things around him.

Monday, August 29, 2011 7:07 PM, CDT
 
Well, that was fast

At 10:40 this morning I thought we'd be talking about moving Paul to some other facility for continued care and treatment/rehab. Within an hour, as I spoke with Karen, the care coordinator, that changed to we'd be talking about it AND he would be moved today. HCMC's recommendation was to transfer him to Bethesda, which has a brain injury program that is very good. That had been mentioned to me before, so that part was not a surprise. Since I had had the weekend to absorb that he'd be at Bethesda, probably, it didn't take long for me to be ready to say, "Go ahead and arranged for transport and all". I had some questions, and once they were addressed I gave the go-ahead.

So, as of about 6:45 this evening, Paul is settled (settling?) in at Bethesda in St Paul. I've updated the healthcare facility. Feel free to visit. I don't yet know what his therapy and daily schedule will be like, or what my visiting schedule will be, but I do welcome others stopping in to see him, to pray or whatever.

Monday, August 29, 2011 10:14 AM, CDT
 

HCMC called a short while ago to give me an update on the low fever that Paul has been running; they were able to identify the bacteria that is the likely cause and wished to do a pick line (again, medical folks, if I misspell these terms, forgive me!) to more effectively administer the intravenous antibiotics that they will use to treat the bacterial infection. This is a common occurrence in patients who've been on a vent; that he's already off it is a good thing.

The doctor who called also gave me a head's-up that we will now be beginning to plan the next step in Paul's treatment, namely where he will go for further care and rehab. I'll be talking with Karen, the care coordinator, later today to start figuring this out. Pray for wisdom as we make decisions.

Sunday, August 28, 2011 10:38 PM, CDT
 

It is later tonight than I usually get here to post an update, so this will be shorter than usual. I spoke with Paul's nurse, Michelle, and she relayed that:

Paul was up in the pink chair for about two hours today (he'd been there for about an hour yesterday, so this has been fast improvement from the first day when he lasted only ten minutes!);

the trach was downsized;

he will NOT be having the surgery for the facial nerve decompression that had been talked about, OMFS decided to wait on this for some reason that wasn't clear in the notes;

he is starting to make some sounds;

physical therapy, speech therapy, and occupational therapy are starting to happen, anywhere between 3 to 7 times a week, depending on the type of therapy.

As with Paul getting off the vent, this progress seems to have happened faster than I expected. I'm thrilled by it even as I remind myself that this is still going to be a long road.

Saturday, August 27, 2011 9:24 PM, CDT
 

I talked with Paul's nurse a little while ago. He had another good day with continued slow improvement. At the time I called he was again sitting up in the pink chair, and that was going better today. He is still trying to squiggle his way out of it, but was handling it better...probably because he was a little more alert than he'd been yesterday. She said he'd been sitting in it for perhaps 20 minutes already! That's double the amount of time he lasted yesterday.

Paul still isn't following commands, or a series of commands, but today he began nodding his head in response to things said to him. Restless, lots of purposeful movement--the challenge is going to be keeping him from yanking the trach hose or the feeding tube as he becomes even more alert but doesn't yet understand what is going on. Michelle (the nurse) told me that she anticipates Paul will be a handful during this time of increased alertness but not quite comprehending what's going on, where he is and why the tubes and things are to be left alone! This evening she said she'd removed the wrist restraints and had something like boxer's mitts on his hands so he could move his arms freely but not pull things. Possibly they'd have to restrain his hands again if he's too prone to pulling the hose or tube out before he understands why they're there, and that he needs to leave them alone. That could be hard on him, so please pray that this would be managed well.

No news yet as to when the surgery slated for Monday will take place. Michelle looked but didn't see it on the schedule, which might simply mean that they're still coordinating it, finding an OR or something.

In addition to praying for Paul, for his continued healing, pray for me. I am feeling the weight of managing as our daily routine becomes busier, with school starting. It will be good, I believe, to have the structure to our days that will come with that. At the same time, I am keenly aware of the logistical challenges that it will bring, especially in regard to visiting the hospital. Homeschool is a blessing, as I can adjust our daily routine to accommodate outside things, yet I don't want it to be SO flexible that the children (and I) don't know what will happen when. It's a balancing act. Over the next week I will be firming up the schedule and finishing the final preparation I need to make. Pray that I would see well how to structure, organize, coordinate, that what needs to be done here at home and in our daily routines would be done, and there'd be enough slack to allow visits to Paul, and help to accomplish that (help with child care). I think this will become more and more an area of need, though I am not sure just how it will look. As with the "wait, and wait, and wait some more" for his healing this is a "wait and see how it shapes out." As I know how it looks and what will help me most to manage I will let the need be known.

Friday, August 26, 2011 9:27 PM, CDT
A day of more positives

I spent several hours at the hospital today, sitting in Paul's room, reading my Bible out loud (my own personal reading, and why not share it with him?), talking to him and with the nurse about him as she tended him.

Seeing him free of the tubes and such in his mouth was very nice. Seeing him so much more alert and reactive was incredible! When I first arrived I had opportunity to stroke his face, and couldn't but chuckle at how he quickly turned his head--so like the way he would do it at home if I touched him during his sleep!

It was very clear that he was much more cognizant of his surroundings today, and much more aware of the presence of the nurse, and of me. He would turn his attention from her to me as we spoke; at one point Alicia told him to "look at your wife", and he turned his attention toward me. It appeared that he recognized my voice and was responding to it, yet he is not fully comprehending what he is seeing or hearing. Alicia relayed to me that the nurse from the night before said he's a bit of a stinker. It's like he knows when they're in the room, and he pretends not to know, and then will peek around when they've left!

He is moving around a lot. Alicia said that he seems to prefer one side to the other, and once they'd shifted him to that position he settled down. It's a guessing game to figure out what he's trying to say when he moves so much, so restlessly: Is he needing a change of position? Is he uncomfortable? Is he in pain? Does he need another dose of relaxant? He can't tell us, so we have to do our best to figure it out.

So that's one positive: Paul is much more awake, though not completely comprehending and interacting. As the swelling continues to go down and his brain heals the expectation is that he will become more and more "normal" in his interacting with peope. For now, this is a huge improvement!

A second positive: Dr. Huy directed to sit him up in a "pink chair". It's an adjustable chair with straps, used for patients like Paul, to get them sitting up. The norm is to have the patient in this chair for an hour or two...Paul had to be difficult! He was very restless and managed to wiggle his way down in the chair to the point that the nurse was thinking he'd be wiggling clear to the floor, so it was back to bed...and he seemed glad to be there again, for all he was still quite restless. He lasted ten minutes in the chair, so that's his baseline. Next time maybe he'll last fifteen!

A third positive: Alicia told me that because he is off the vent they were looking to move him out of SICU to the regular surgical floor. The order was in, and they were waiting for a bed to be open; they purposed to have him right adjacent to the nurses' station, since he tends to be very restless and needs a fairly close eye kept on him. I had a call about 7:15 that a bed had come available so they were going to move him tonight. He is now on the fourth floor, in STN3. This is near 6th Street, and you would go to the purple entrance and up to the fourth floor, and they'll direct you to his room. I'll figure this out myself in the next few days, whenever I get in to the hospital again.

Though he has been moved out of SICU the same trauma team that's been overseeing his care will continue to do so. A member of the OMFS team stopped in to explain more clearly to me a surgery that is planned for Monday. I had been told that they were noticing a slight droop to the left side of his face, suggesting some nerve compression, and today I was able to see that his left eyelid doesn't quite close. So they're going to go in, see if there's compression, relieve it if there is, and also do a nerve assessment. I do not know what time Monday that will be.

Pray for this surgery on Monday. Keep praying for the swelling and brain injuries to heal, that Paul would keep waking up and become increasingly more cognizant of what is happening around him, able to properly interact to what he sees and hears and is told. And please pray for me to discern a good balance for our lives--visiting the hospital and managing the home front, especially as school starts for Halley on Monday and for Emily and Samuel the day after Labor Day. These changes will bring both more structure and more stress into our lives, as I must manage fuller schedules for all of us. Pray that I would be wise in finding my way in this.

Thursday, August 25, 2011 2:50 PM, CDT

Paul is totally off the ventilator!

That was the heartening news I received earlier today when I called to see how he was doing (this was one of the days I didn't go to the hospital), and that was the first thing the nurse, Heather, told me. I could hardly believe it. I knew they would begin the process of weaning him from the vent once the trach had been done, but I expected it to take a day or two, not have it accomplished less than twenty-four hours later! Heather said he has a trach collar, ensuring that his oxygen is adequate; I don't know the parameters, so her telling me that it's 8 liters of oxygen doesn't convey a lot. I infer it's good, and I know that his blood oxygen level being at 98% is good!

Heather told me as well that he is no longer being sedated. That was actually stopped yesterday after the trach and peg procedures were done. So he is moving around more, rather randomly; as she said, she doesn't know what is going on in his head that produces the movements. And they've stopped the continuous infusion of pain medication through the IV; instead they are giving it to him "orally", which right now means crushing it and administering it through the feeding tube.

These are very small steps in the good direction that Paul has been going since this happened. I wish it were going faster, wish he were waking up and reacting more normally, interacting with us. What I keep reminding myself is things are going in the right direction. The most likely reason he is not responding yet is the head/brain trauma, which needs time to heal to the point he wakes up and responds more normally to stimuli and people. So, as before, we wait, and wait, and wait some more.

Wednesday, August 24, 2011 10:15 PM, CDT
 

Urgh! That's not a very nice way to start an update, but I had just been typing and had told it to post, and instead it was eaten!

So, all right. This is going to be a LOT more abbreviated than originally intended. First, a word to anyone who wrote down the security code from an earlier update: I goofed and put the wrong one in there; it's now been corrected, so please cross it out and copy down the new one you'll see in that update (7881, in case you don't want to scroll down).

At the end of the day, Paul had both the tracheostomy (aka trach) and gastrointestinal tube (aka peg) done today. That had been the original plan, then an emergency (NOT with Paul) had the team that was to do the trach bumping his procedure to tomorrow. The peg procedure was still going to be done, and was, and then just as the nurse finished cleaning him up and all in came the trach team! They both went well, and tubes are now out of his mouth so he will be much more comfortable.

The orthopedic doctor called me this afternoon to discuss Paul's scapula fracture. After looking at the scan and at Paul his considered opinion was that doing surgery would not be the best decision for Paul. He believes that it will heal well without surgery and while there may be some limitation to his range of motion (which Paul would be able to adapt to) surgery could significantly impair the strength of his shoulder, since there is so much muscle around the shoulder blade that would be "insulted" by the surgery. If over the next couple weeks circumstances change and suggest that surgery would be helpful this decision may be revisited. For now, though, the decision is no surgery.

This is much less than I had originally written for tonight, but I can't recreate what I had done, and if this one is eaten too...well, then, no one will know and people will be wondering what Paul's present condition is. If this one makes it on...well, it'll be a good base to elaborate on tomorrow! For tonight, I am ready to wrap the day.

Wednesday, August 24, 2011 2:25 PM, CDT

A Care Calendar has been set up for me/our family. Initially, this will be a good place to check for when a meal might be needed, but it will also likely become a good place to see what other practical needs we have, such as rides or help with the children. I haven't gone to it yet myself, but it's there and available as a source of information in addition to this site.

Go to http://www.carecalendar.org/. The calendar ID is 84463, and the security code to use is 7881.

Wednesday, August 24, 2011 6:50 AM, CDT

One addition to the meal guidelines that crossed my mind early this morning: When you label the meal also indicate what it is and any instructions for heating/reheating. I'm sure that this is something that you'd think to do anyway, but let's get it written down, hmmm?

Tuesday, August 23, 2011 9:11 PM, CDT

I'm doing tonight's update in two parts. Part 1: Paul's condition is essentially the same today as it's been for the last few days. I went into the hospital this morning; I hadn't planned that, but Dr. Huy had advised that I might have a better chance to talk to the various doctors if I came during the morning (only it turned out that today was a busy clinic day for neurosurgery, so I couldn't talk to them while I was there). So I was present during a period when the sedation was turned off to see if he would react/respond/interact more normally. Still no to that, which is disappointing. The nurse told me that they'd done another CT scan, and while there wasn't a major improvement neither was there any deterioration. Slow though it be, he is still moving in the right direction.

That was the main message that came through again today: Paul's recovery is going to be extremely slow. He's going in the right direction, we have to be patient and keep doing the things that facilitate healing. Neurosurgery's hope is that as the swelling goes down and the bleeding heals he'll wake and become more responsive, able to follow instructions. So, again, we wait, and wait, and wait some more.

While I was there today I did have opportunity to talk with the critical care team (the SICU people, I believe) and the trauma team (Dr. Huy was part of that group, so I surmise that's who it was). Critical care will do the tracheaostomy and feeding tube procedures, and that is still tentatively slated for tomorrow. They were going to go ahead and set it up, but I haven't heard anything specific as to the time it'll be done.

I feel that there is more I wanted to say about how he is doing, but it has skittered away from me. So I will jump to part two of this update, which is to FINALLY let you know what has been set up for meals for our family. Here are the details:

Meals for our family may be brought to Bethlehem Baptist Church, downtown campus (720 13th Avenue S, Minneapolis). Come to the visitor entrance, and a custodian will let you into the kitchen to leave the meal in either the refrigerator or freezer. Space has been designated in both for the meals. Meals should be made for six (6) servings, put into disposable containers, and labeled with the date. Also indicate if it's okay to put it in the freezer, as the meals may not be used immediately. Brenda Remus will get the meals from the church to our home. If you have any questions about this, contact Lynda Hanson, 612-455-0800, extension 805, between 9 a.m. and 5 p.m. Monday through Friday.

Monday, August 22, 2011 9:44 PM, CDT
Settling into marathon mode

Several different analogies are coming to mind as I start this update--the marathon idea, more of a roller coaster, peaks and valleys, back and forth--just to list a few. I rather hate picking up the phone and seeing "Hennepin Co Med" on the caller ID, because that means not necessarily bad news but not wonderful news either. Usually it's someone needing to explain something that they are wanting or needing to do to treat Paul, something that needs consent before they can do it. Ugh.

Things that are occuring now are pointing us in the direction of "This is going to take a while." The nurse put it most succinctly, I think, when he explained to me this evening during my time at the hospital that Paul shows purposeful movement (as he has been doing since the first day) when they remove the sedation, yet he is unaware of what is happening. He will have his eyes wide open, for example, but doesn't react to people in the room, movement about him, doesn't respond to things that are said. This juxtaposition suggests to them that the head injury is more severe than they first perceived, so it will take longer for him to begin to react in a "normal" manner. Another way to picture this is to think that as a result of the blow to the head some (many?) of the neural connections are disrupted and Paul's brain is trying to reroute them, and it takes time. He hears what is said, but he can't quite process it. He sees, but he isn't fully processing what he sees to react to it.

As you can imagine, on one level this is disheartening. Yet even in the midst of the letdown I have not been allowed to forget that there are positive signs, that Paul is moving in a good direction. It's far more slowly than I'd like, than I'd hoped, and yes, I wish that the doctors could tell me when he will wake up, that he will be himself again...but I know that they can't, that we simply have to wait and keep waiting, keep praying, and watch for God to do the healing that Paul needs.

On the medical procedures side of things: Yesterday a filter was inserted into his femoral artery (I think), to prevent any clotting from traveling up to the brain. Because he is in bed, not moving around, blood clots are a concern. Normally a person would be given a blood thinner to avert this problem, but because of the hemorrhages they don't want to give him blood thinners at this point. They are using some wraps on his legs that help with the circulation, but this filter is a better tactic to ward off any problem. Later on blood thinners might be appropriate, but not right now.

A procedure that will be coming up, probably on Wednesday, will be a tracheaostomy (any medical folks out there, forgive me if I misspell some of these terms--I think I'm doing pretty well at them since they're unfamiliar to me!). They'll also insert a feeding tube directly to his stomach. Dr. Huy (pronounced "wee") called me about this shortly before I was planning to visit Paul, so he explained it then over the phone and walked me through it again in person. This step will allow them to remove the tubes from his mouth, which are an irritant to him; whenever the sedation is lightened one of his first movements (that purposeful movement) is to bring one or both hands up to his mouth to pull these irritating things out! They'll probably be able to lighten the sedation more, and eventually stop it completely as he won't be fighting the tubes. Other complications such as pneumonia are also minimized.

As we talked, Dr. Huy told me that if the patient were his father, for example, he'd agree to doing this procedure. My position on this sort of decision is that they have the medical training and experience I don't have. So if they are recommending a certain course of treatment I will ask questions to be as sure as I can that I understand (and they are very patient to answer my questions till I'm satisfied), and then consent.

Though these things seem discouraging, they are still moves in a good direction. Physically, Paul is stable and has been since the first day; his blood pressure was up that first day, but was relatively stable even then, and has since settled. He moves with purpose, so there's not concern about that. These procedures will help to advance his healing. I was encouraged to see that there'd been even more drop in the swelling on the left side of his face, where the laceration started--it was significantly better than it had been on Saturday. They'd removed the gauze turban that had been over his head so I actually saw his left ear, what they'd done to set the foundation for future reconstruction there. It's not pretty but it's a base to work from.

As I begin to close this update I want to present some particular prayer points--not to limit you, I believe that God will direct your prayers, and you may be guided to pray things I don't think of! These are some things that have come as a result of tonight's visit:

Pray that God will restore any disrupted neural connections, rerouting them or whatever He chooses, so that Paul will begin to process things that he sees and hears, and react in an increasingly normal manner to stimuli.

Pray that the procedure would go well when it is done, and that it will be instrumental in helping him get off sedation and off the ventilator as soon as he's ready.

Pray wisdom and discernment for the doctors as they continue to watch, do tests and CT scans and other things to gather information that will help them give Paul the best treatment possible, what he needs to recover well.

Pray that I would pace myself, keeping a healthy balance to life for our children and for myself, especially for the physical healing I need. As an aside, on that matter--it only took me about three days to figure out that part of the pain I was experiencing came from swelling of the forefoot. As I loosened the flexwrap a bit that was eased. There is still pain from the surgery, but it's much easier to bear now that I've figured out and sort of separated the two sources of pain. Whew!

As I close for tonight, I'll share a line or two from a song I've been hearing on the radio. I only have a fragment of it tonight, and I'm not up to searching for the lyrics now (but I suspect I will tomorrow). The phrase that's sticking in my head is "You must think I'm stronger". For His own purposes God has allowed this to come to me, and to Paul. He's deemed me strong enough to handle it, and that's part of the message of the song: I am strong enough when I let HIM handle it for me, when I let him carry me. And that brings to mind a moment from last night as I prayed before sleeping, when I realized and was able to put my head on God's shoulder and just let the tears flow for a few minutes, to have that comfort at a time I needed it very badly. He IS SO good.

Saturday, August 20, 2011 9:16 PM, CDT

Today has been somewhat of an up and down day emotionally for me. It is hard to wait, and wait, and wait some more, to know that Paul is still not awake, still sedated, I have felt God's calming grace today, and even when the worries creep up on me that peace is there.

Now, I know that this makes it sound as though there was bad news today. During a phone conversation with the nurse this morning it did seem that some of the impressions I had about Paul's condition were inaccurate, and that was a bit frightening. God was gracious to keep me remembering that this will take time, we're only two days into this experience, and Paul has NOT gone backward. In fact, as I learned when I went in to visit and have some in-person updates, the OMFS people had been able to do more repair to his missing ear, more than had been expected, and it looked good. That was part of the surgery from yesterday.

Mike, Paul's nurse today, explained well to me and really clarified some of the things he'd said on the phone before I came in. Paul is moving both arms and legs, and in a purposeful way. He is aware that something is wrong, there are these tubes and things, and he acts to get rid of the bother. Of course, they don't want him to do that, so they are needing to keep him sedated. However, Mike said, they have taken the level of sedation down as far as they can--just enough to keep him quiet, for his safety.

It had been a little disheartening (and confusing, and frightening to me) that he is not responding to commands. The thumbs-up that he'd done the other night had been so encouraging to me; hearing that he's not yet able to comprehend and follow commands was rough to take in. Again, Mike's explanation today gave me better understanding of what he's seeing, what they're looking for, and that brought more peace. Paul hears, but he's not quite getting it, so he's not able yet to follow instructions, such as "give me a thumbs-up", "squeeze my fingers", "now let go of my fingers". They are looking for him to be able to respond correctly to those three commands, maybe others, to indicate that he's comprehending. That is one factor that is holding him on the vent, as I understand it.

During today's time at the hospital I also spoke with one of the neurosurgeons, whose remarks further calmed and encouraged me. He was the one who mentioned that the OMFS team had done some repair to the outer ear, and it was a good step. Further surgery to do reconstruction is still in the future, but this was better than had been anticipated. He also told me that the main role of neurosurgery is to help the patient heal. In Paul's case that means, right now, keeping him sedated so he rests and wait while his body does the healing that it needs to do before he "wakes up". They monitor, as I've said before, and have a variety of steps they can take if needed to help Paul's body (and brain) recover. As hard as it is, that means simply waiting, and waiting, and waiting some more.

They did do another CT scan of his head today, and included a CT scan of his fractured scapula. The head scan showed that some air that had somehow gotten into his brain, under the skull (from the impact, I presume), was down about 90% from the last scan--a good sign. Until that is completely cleared he is on flat bedrest, which is another reason the vent stays on; they have to be able to have him sitting up before the vent can be removed. The areas of hemorrhage were blooming, meaning that they've grown, but that is typical...just as a bruise takes time to fully emerge, so does this. It's usually between days two and four that things peak, and that's right where we are.

So, Paul is still sedated and on the ventilator. He shows purposeful movements and his pupils react as they ought to light. The laceration is cleaned and closed and while there is a lot of swelling there it's gone down significantly (according to the neurosurgeon) from what it was. I couldn't see that, as they'd put so much packing around the wound, so this was the first glimpse I had of that area (as much as showed under the dressing). The waiting is hard, but things are going in the right direction.

I know that people are wondering about visiting Paul. The answer to that is yes, please feel free to do so. Right now he won't really know you're there, but you are welcome to stop in, to see him, to talk to him, pray for him. For the moment, due to my own need to physically recover, and for the best for our children, I am getting into the hospital to visit about every other day. It's a wonderful relief to me to know that on the days I don't make it in he has others visiting!

I also know that people are wondering about bringing meals and helping in other practical ways. As far as meals go, I apologize that I haven't been really able to wrap my brain around organizing or coordinating that. I have sort of dumped it on Lynda Hansen, Val Morrison, and Ingrid Larson, with God over all. I'm not sure what has been figured out, so my advice is to try contacting one of these women. Val suggested to me putting a cooler on our porch so a meal could be dropped off even if we're not home, and I do have a cooler on the porch now, and I think I could manage to say "yes, bring a meal and leave it there if we're not home," if you called me. I am simply trusting God to cover this for me; He covered lunch and supper for yesterday and today, and we've one meal already for tomorrow. I'm actually waiting to see what He does next, for tomorrow's other meal.

Regarding other practical needs: I have a couple appointments on my calendar and will need some help with one or two children during those times. The appointments are Wednesday and Thursday, both in the morning. I would also likely need some help with the younger two next Saturday. If any of those times are possibilities for you, let me know and we'll see what works best.

Thank you again for all your prayers, all your support and help! It means so very much to me, and will be a gift to Paul when he can hear how God cared for us during this time.

Friday, August 19, 2011 10:33 PM, CDT

A brief update on the surgery Paul had this afternoon to deal with the laceration: he was back in his room around 7:00 pm, and all went well with the debriding (I think that's the correct term) and such. I haven't actually spoken to the OMFS people; I suspect that our line was busy when they tried calling, as several friends and family members gave calls. So a bit of information from the nurse will need some explaining--something to do with a flap. I'll have to explain that when I understand it better!

For tonight, Paul remains sedated to keep him comfortable and to prevent his fighting the ventilator. Because they have to keep him sedated they've not been able to do all the neurological assessment that they want. Lord willing, once they are able to remove the breathing tube and stop the sedation he'll wake up, understand where he is and not be acting to pull out tubes and lines and such. He is physically stable and the neuro assessments they can do have stayed about where they were last night. So it remains a wait and see, keep praying, and keep praising God for what He's done thus far.

Friday, August 19, 2011 6:09 PM, CDT
Paul's accident

My goal in this first journal entry is to provide as complete an account of what happened yesterday and where we are today. It's hard to believe that it's been not much more than twenty-four hours since this started, and I have been so grateful for God's provision for our needs as things have unfolded.

As far as the accident itself is concerned, I have very few details; what I know is it happened, and not very far from home, moments into Paul's journey to work. I didn't hear the phone (the sewing machine's whirr drowned it out), so it was some ten minutes or so later that I listened to the message on our answering machine. The shock of hearing he had a head injury, that he'd been hit by a vehicle, and that I needed to come to the hospital was huge. It helped to know he was alive, at least, but his condition was listed as critical because it was (is) a head injury. They'd stablized him and had made the decision to put him on a ventilator--not because he was having trouble breathing, he was breathing on his own when he came in, but to be proactive due to some of his injuries, some pulmonary bruising. Their concern was that swelling there could compromise his breathing and they'd rather put in a breathing tube sooner than later. As a consequence of the breathing tube/vent he was sedated so he wouldn't fight it.

With this "come to the hospital" directive, the first move I made was to call our church to get a ride to the hospital. I was shaky enough from the news that I didn't want to try driving myself, plus I'd had foot surgery myself the previous week. And I knew that calling Bethlehem would pull prayer for this situation, and I wouldn't be alone to walk through the hours and the questions and decisions. God was so gracious to provide me a ride, to bring one of our pastors there within the hour, to have a friend who works at the hospital join us for a while after he finished work, to have another friend come and stay all the rest of the evening till I came home (and gave me a ride home!). And He blessed me with another friend who went to our home and hung out with our children, even stopping to get McDonald's for supper! It was mercy beyond my asking, seeing such care lavished upon me, and my children, and Paul.

Now for the details of his condition. Medically, he has a couple skull fractures, two hemorrhages (a sub-dural, and a sub-arachnid), a laceration that starts on one side of his face and goes around to the back of his head, some pulmonary bruising (hence the ventilator), a small tear in his spleen, a fractured scapula (shoulder blade), and he lost about 80% of his outer ear (left ear). The challenge that presented to my imagination is, "How is he going to keep his glasses on? Hmmm." But we'll deal with that a ways down the road.

Of these, the greatest concern is, obviously, the hemorrhages, and the facial/scalp laceration comes a close second. Neurosurgery had been called in for the head injuries, oral maxiofacial (and I do apologize if I don't get some of these terms quite right!) for the laceration, and a couple other areas--all providing wonderful expertise and care for my husband. That was, indeed, another blessing: HCMC is a level 1 trauma center, so they have excellent staff and facilities, he's in one of the best places for care he could be.

Paul has had two CT scans since he arrived at the hospital. One was done shortly after he arrived, the other somewhere between seven and eight last evening, or about six hours after the first one. The amount of bleeding had increased slightly, but not alarmingly so, and the neurosurgeon didn't see that there was need to do any surgery to relieve pressure from that bleeding. She explained that usually it will increase just as a bruise shows up gradually, and it looked like it had peaked. They were monitoring him closely and his responses to their checks were positive and encouraging.

As of last night, the plan was to keep Paul sedated so he wouldn't fight the vent, to help him rest and to let his body begin to heal. He was scheduled to go into surgery this afternoon to have the facial/scalp laceration cleaned, cauterized, and closed. They'll possibly remove the vent tomorrow, but it will depend on how things look. He was moving his arms and legs, exhibiting withdrawal reaction to being pricked with a pin, his pupils react properly to light. Just before I left the hospital last night he was rousing some as they'd lightened the sedation, and the doctor asked him to give a "thumbs-up" if he could hear...and Paul did! It was a bit delayed, but definitely in response to the request, so that was a wonderful thing to go home with.

I am so very thankful and grateful for all the support and practical assistance that God has lavished upon me and the children, and Paul. The presence of friends last night was a blessing, and friends today have done some grocery shopping for us, brought food for lunch and supper, took our younger two to a park to play (so I was able to get a nap knowing that my children were cared for). Others are organizing more meals, and I will put information here for who to contact, what we might need, when visitors will be welcome...whatever will help you all to know what is happening and how to best serve us during this time. Your prayers are most welcome now and throughout this time.

Powered by liveSite