Recovery Day 15...
went pretty well. It helped that I resumed some sort of normal schedule by getting up a bit earlier than I have been, and I had ample help today, as well. It was good to see Ian also resume more of a normal schedule.
He didn't do quite as well with the ultrasound today, in part because of some decisions that Elaine and I made when all of this started... namely, that one of us should receive all information then filter what others receive. That is important for a couple reasons. First, it gives an accurate and controlled message. Second, it prevents panic by some who may not be quite sure how to deal with the information they receive. Some people may not agree with that philosophy, but that's the decision that was made by the people with the right to make the decision. I think it is the right decision and it protects my son the most, so I'll stand by it 100%.
I may have thrown Ian's schedule off a bit this evening as I was watching the Orange Bowl. I can hardly believe that Virginia Tech actually won a Bowl!!! They never win bowls...
Ian's Prograf levels have been adjusted down slightly today as the doctors try to work his levels to the point they should be at. Nothing to be concerned over, just the normal work they do to try to get it to the therapeutic levels they look for. They draw blood around 6:30 am every morning to check the levels, then he gets his next dose at 7 am. That time may be adjusted for convenience for Elaine and me, but we'll see what we determine to be the best time for us and for him. I'm against the idea of waking him up to take his medicine every night. But too early in the morning isn't good because we need to have labs drawn right before he takes a dose (he'll get a dose every 12 hours). Time will tell. Just one of those things we'll need to figure out over the next while. Thus our new search for a new state of normal.
Labels: Baby Ian, biliary atresia, Ian Herbst, liver, liver disease, transplant
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