Thursday, September 6, 2007

Day 9: Sunshine and Smiles...

...and even a few bites of actual food!

John was afebrile through the night and woke up this morning looking great with big smiles on his face. He's been pretty good throughout the day and even ate some for lunch. At the moment he is napping, afterwards I'm hoping he's up for a ride through the hospital to go and see Bob and Tom.

His feeling better today has given me more time to reflect on what we learned from Brandy, the nurse coordinator, yesterday and so I thought I'd share some of the things that we found interesting, not that any of it was boring. One part of their program is feeding-therapy, short-gut kids have a hard time eating, not only just because of all the things that they've been through and go through on a continual basis, but also because their caloric needs are often met or nearly so through IV TPN or g-tube feeds of one formula or another. About 6 months ago a feeding therapist and her entire team and all their families moved from Atlanta, Ga to come here and be part of this IRP and Transplant program, they are having great success and even though John does eat, and heartily at times, we are glad that they will be around to help. They are successful enough that they have bowel transplant kids that are not only g-tube-feeds and TPN free, but have become so reliable at eating that their g-tubes have actually been removed. They tell us that while some short gut kids have managed this, that it is all but unheard of for a transplant kid. Because John's small intestine is so dilated the team isn't really expecting much from his gut, in way of helping him grow and gain weight before surgery, but keep running g-tube feeds and encouraging him to eat because that helps keep the gut bugs busy so they don't have as much time to be crossing the gut-wall and causing infections and also helps avoid liver damage from the tpn. The surgeon will make the preliminary determination of what bowel surgery she will do on John as soon as the last test results are all in, but will not be able to make the final determination until she has him open and sees exactly what is in there. There are kids who have a step procedure done and then several years later their bowels dilate again and they have a second one done. The surgeon is also the one who makes the final determination when John is ready for surgery and there is no fast and hard rule as to how long it will take or exactly what it will take, but one of the things that they are looking for is for him to begin to follow the growth curve again, he hasn't done this in a very long time. When Brandy found out that Mark was going home yesterday and not coming back until the 16th she was telling him how much of a difference that he will see - here's hoping that if not this visit, one soon he will need to bring the kid some bigger clothes, lol, it sure would be nice if he could get out of 12mth pants that are too big for him, by the time he is 4.

So far we have been really thrilled with this program for John and look forward to good things from it. These guys are used to seeing miracles and though John is one of the more malnourished kids that they've gotten in here, they are expecting to see great things from him, and so are we!

Speaking of those kind of things John has been doing some strange bent crossed finger thing lately, almost like he is learning to snap his fingers, but yesterday he figured out how to hold them straight up and cross them and so today everyone who has come by has gotten to see him crossing his finger just for them :)

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