Wednesday, April 22, 2009

Update

We weren't able to get in to see Dr. Kamin until 4:30pm today, and we didn't get labs drawn until after that. In fact, we didn't get "home" until almost 7pm from the hospital. Luckily, we spent the very nice morning touring Boston in a Duck Boat. Anyway, just wanted to update to let y'all know that we really don't have anything to update. Labs won't be back until tomorrow. The additional stains done on Keegan's liver won't be done until tomorrow, and then they have to decide what to do with the information from the additional labs and stains. There is definitely something going on with Keegan's liver, and the possibilities range from the completely benign to the not-so-benign (like that? optimism, people, optimism). At any rate, I'll be posting again tomorrow with (hopefully) more information. Other tidbits from today's appointment, we'll be shaving some time off of Keegan's feeds. This will require more volume overnight and a higher caloric density to his formula. Both of these things have been problematic for Keegan before, and we no longer have the anti-vomiting medication on board to ease the transition. Please pray that this will go smoothly because Keegan desperately needs more time off that heavy backpack. Also, we'll be weaning Keegan a bit from his oral antibiotic that only works in his GI system. This is the drug that has been the most effective in neonate transplants with GI issues like Keegan. The weaning process is very slow. This is our first big step down, so we would love for you to also pray that Keegan doesn't revert to old problems with less of this med on board.

Today, we asked the doctors if we could work on going home by next Wednesday since that's when our apartment lease is up...after being extended already for a week. They said it sounds pretty reasonable. Yeah! We will be going back in to the hospital tomorrow for a short procedure to put a different g-button in Keegan's tummy. The surgeon put one in that's a bit too long, and even with Keegan's current stomach distension (he's gaining on being as big as he ever has; please pray, if you don't mind, that his bowel settles down to his normal rate soon), the one he has in right now is gaping a bit. A g-button that's too big can cause leaking (our current problem) and irritation. This will be done easily, we pray, by the nurse practitioner in the GI clinic at some point tomorrow.

In the meantime, check out the new pictures we posted from just plain ol' being silly to our tour this morning. Until tomorrow...

Maddie

p.s. Please keep my grandfather, Poppy, in your prayers. He had an accident with a chainsaw this afternoon and needed some stitching up. Not as scary as it sounds, but still prayers are welcomed. Thank you, Lord, for having angels standing guard over him today.