Friday, May 8, 2009

Not May 15th

Blaise is officially NOT coming home on May 15th. We have no idea what our next best estimate for coming home is, but the blood in the diaper incident has seriously set Blaise back on her feeds and the PN reduction. She is back at 10 mL/hour for milk and 20 hours of PN a day. It will likely be more than a week to get back to where she was on Wednesday and probably another week after that to get to goal levels of feeding. So, barring further setbacks, we're looking at another two and a half weeks or so. The good news is that her labs still look good and the xrays have all come back perfect, so this isn't likely to be perforation of the bowel, necretizing enterocolitis, a line infection or a major GI bug. It was probably just some kind of irritation.

The really frustrating thing about this is that we're having a hard time gauging the response of Blaise's team. On the one hand, her surgeon thinks the situation is serious enough to have stopped feeds for 40 hours and to order very slow feeding increases. On the other hand, they didn't seem to think it was bad enough to send anyone to talk with us about it until we asked last night and, even then, they sent us this idiot of a junior resident who had never met Blaise and had no idea what was going on. The nursing staff and the GI doc all seem to think this slow increase schedule is a complete overreaction, but the surgeon has the final word.

We're hoping an uneventful weekend will give us fodder to argue for a less conservative increase schedule. We don't want to push Blaise too hard, but it seems silly to go at a snail's pace through volumes we know she can handle, especially since she seems quite healthy and we've ruled out the big scary things.

1 comment:

vicki said...

And so goes the roller coaster ride. Sorry that it is a ride at the hospital and not one at World of Fun. You have a right to scream, yell, break a few dishes, then go in and rock Blaise. Keep hanging on... the prize of having such a precious gift in your arms at home will be well worth it. I can only imagine how tough it must be. Hugs, prayers and good thoughts from KC. Vicki