10 March 2010

low tolerance for inconvenience

That is David, and my sister's response was, "Well, he better work on that!"

I think we are in a new phase of healing -- a phase that is VERY frustrating because it is slow and it is going to remain slow. David is doing better today than yesterday; however, his healing is a bit behind the curve for best case scenarios, not off the charts, and the med staff keep emphasizing that to each their own, but still, being on the slow side is not comforting. There has been an ongoing examination of his "native organ" (his old heart) also, and there is some question about whether David has an autoimmune condition which caused his immune system to attack his heart. This condition was written up once and our docs are getting in touch with the author.

I can't help but have the vision of the geeky med guy (and I say geek only with the best of intentions knowing full well that we have at least three geeks in our family, I don't know about Julia yet.) getting a call that our docs have another case for him to document. What joy in geekville!

Anyway, this may present a complication to be worked on. I am sure it means more time in the hospital as they will be extremely careful weaning him on the strongest of IV anti rejection meds. Our task today is to begin to get the medication schedule down. Watching David try to do this is a pretty vivid reminder that recovery will take time.

On the positive side, David walked around the nurses station last night and this morning. He travels with an entourage: I walked with his this morning and helped him push the IV tree, Cheshire carried tubes, a nurse walked behind him with a wheel chair in case he needed to sit down, and another nurse walked with the ventilator. We are quite a group, I suggested we sing some musical comedy number -- We'll walk down the Avenue, came to mind -- but was outvoted. David is allowed to get up and Cheshire said he spent a long time in the bathroom shaving last night. He was quite beautiful this morning, something a wife appreciates.

So, this is a weird combination of feeling better and not feeling well enough. David wants to be further along, he hates the demand of patience. I think he may be feeling a bit depressed as well -- he has had no condition to compare this to and certainly although we have both researched and read about this process, it is yet another process that is completely different when you are the patient, or the patent's wife for that matter.

I cannot help but by optimistic. Although news of some autoimmune condition is scary, there was no condition that was found when they did his initial testing for the transplant list. I don't know, but will ask, if such testing was done, but with all that they did test, I cannot help but expect that such conditions are looked for. In addition, from what I've read, some rejection of the new heart is expected during the first year and rejection is studied and medicated. David's condition if it is a condition, may not be tough to control.

In other news, Julia and I crashed at 8 last night and both of us slept hard through the night. I had fortunately walked the dog when I got home from the hospital, but missed her bedtime walk. I woke up with the alarm and fell back to sleep. Julia did not move with the alarm and we slept in a little bit. Even when we got up, I made a good breakfast, had her help me pack her lunch, and we sat together to eat for longer than usual. The result was that she was more than an hour late for school but it was time well spent.

Julia is having trouble with transitions at school, and at home as well with her therapists. She always have trouble with transitions but his massive change in our lives makes it a bit worse. Not unexpected, and hardly awful looking at her whole day. She is drawing a lot -- more than a lot, and has valentine cards for me and for David often. Also, birthday cards. I have to tell her about get well cards.

thymogobulin (anti thymulsite gobulin)

No comments: