From ShortGut - Wiki
- Max Cares: page with all of his step-by-step cares (medical procedures etc)
- Max has long-segment Hirschsprungs disease with 21cm of ganglionated intestine from the LOT. He had fairly severe TPN-associated liver disease (TPNALD) -- total bilirubin as high as 24 at one point, and was listed for a Transplant at Pittsburgh. Now, thanks to Omegaven, which we travelled to Boston to receive for 3 months, his total bilirubin is 0.5 and he is the picture of health! He has moved to inactive status on the transplant list, and his weight went from less than 3rd percentile to 40th or so now.
- Key surgical procedures and other medical stats: Stoma at 21cm (original 1mo old length -- likely longer now), resection (removal) of aganglionated intestine (retaining 9cm of colon to the rectum), 2 Broviac lines (one in each femoral vein) -- he also kicked one out and another broke, but both were replaced in the same place. He's had 2 "line" infections from gram-negative Klepsiella most likely from gut translocation, plus another that never generated a positive culture (remained in the gut) but did have a strong immune response, plus one staph epi line infection. His line got clogged from rifampin in treating the staph epi -- apparently a known but infrequent risk.
- Max has started on Inulin -- a Prebiotic that seems to be working well! Stoma output dropped by 15cc/kg in one day, and has remained at this lower level, and no episodes of overgrowth for 6 months and counting!
- Max has food Allergies (egg, milk, pea/peanut) -- he had a complicated pattern of allergy results as described on that link.
- His original stoma was brought out at 25cm at age 1 month (June 2006), but over the summer of 2007 his output progressively decreased, especially over night, and then he started vomiting green bile (the dreaded bilious emesis). We drained stoma with red rubber catheter, waiting to see if it improved on its own. It did not, and a surgical revision and re-biopsy was performed at the end of July, which found that the terminal 4cm was aganglionated and this was likely the problem. This was resected (resulting in the current 21cm estimate), and after a long two week recovery with more bilious emesis (took a while for function to return, possibly due to codine as well), it has been working great ever since.