I hope it’s ok for me to be here… my daughter has functional SBS, although she has almost all of her intestine, it has never truly functioned as it should. She was born in November with gastroschisis, and had surgery in December for a suspected obstruction, and again three weeks ago for tapering. I have been searching for families to connect with who might be able to relate to what we’re going through, and so far the only stories I’ve read that seem similar to ours are short-gut stories.
We are at Children’s in Denver and have been in-patient since she was born almost 16 weeks ago. We’ve started and stopped feeds more times than I can count at this point, and she’s been on TPN and lipids for all but about 5 days of her life, when for some unknown reason feeds were working and she was almost to full oral feeds. We were actually scheduled for discharge a little over a month ago, but they kept us because she was losing weight, and then decided she needed the tapering surgery. Since the surgery, the highest she’s gotten on feeds is about 12 mL/hr (her goal is 26 or 27), right now she’s at 10/hr. She’s got cholestasis from the TPN, her direct bili was 11.8 at one point, but this week is at 5.9, with her total bili at 8.9 (down from 6.1 and 9.1 last week), but her AST/ALT have doubled since last week.
I’ve been in contact with Dr. Puder in Boston and with Dr. Mercer in Omaha. Our GI doctor here in Denver, Dr. Soden, thinks that we should go to Pittsburgh to be evaluated and have her listed for a short bowel transplant.
I’m hoping to get some good information from this group, since we’re really just starting on our pseudo-short-gut journey…