In and out of hospitals

So the visit to Boston at the end of Feb. was a well-check. We reimaged the upper and lower bowel and ultrasounded the abdomen. Results are that the gut appears to be truly short at this time, but whether this is due to scarring or disuse is still to evolve. Peter still seems to have his own unique pathway from the stomach to the ileostomy, so it is possible for formula to pass the whole way through from stomach to ileostomy, although we do know that some will exit out the duodenostomy and maybe the jejunal fistula as well. The liver appears homogenous in the ultrasound, which I am told is a good sign. Dr. Kim, Peter's surgeon for transplant or reconstruction, was not very optimistic about Peter's abdominal ultrasound, concerned about the amount of ascites still present and the shortness of the gut we now see, as well as the usual concerns about bleeding times and portal hypertension. However, he and the GI and Omegaven doctors all felt that we should begin to try feeds again, and we will talk about the surgical prospects (or lack of them) after we have seen how the bowel actually is working and digesting food now. So we agreed to start feeding 1 Tbsp and clamping the G tube (which is usually to drainage) for 2 hours afterwards. After 4 days go to doing this twice a day. After 4 days go to doing this three times a day.

He seemed to be doing great until this past Friday, March 14. Out of the blue Peter began to fuss and act quite agitated, very uncharacteristic of him. I changed all of his ostomy bags, G tube dressing, examined all I could for irritation and could not pinpoint what the problem was. About 5 hours later his temp went up to 100 and we called Dr. Kamin for advice. He told us to go to the ER to check for bacteremia and for peritonitis, ASAP. We wanted to go up to Boston, but he felt that something acute could be going on and wanted us triaged up there if need be, but not to drive such a distance not knowing if Peter was in trouble. So we were admitted, cultured, started antibiotics, and had another ultrasound as well as abdominal and chest x-rays. Peter and I stayed in CHOP through Tuesday, and we still don't know what the problem was or is, but he is home again, on IV antibiotics and is to hold on feeds for now. It is possible it is just a cold. It is possible he has an infection of one of the pockets of ascites in the abdomen. It is possible that his gut can't even handle 3 tablespoons of formula a day. It is even possible, although not much more than a "hmmm" was accredited to this: that the little piece of fistula ostomy appliance that I found in his ileotomy bag caused a temporary blockage and a lot of pain and inflammation until it passed though the gut. As always with Peter, nothing is ever very clear as to what the problem exactly is or what the cause was. In CHOP he put on a lot of fluid and his albumin dropped down, both of which he does when he gets ill with virus or bacteria, but now he is back down in weight and edema. The good news of it all is that many people at CHOP saw how well Peter has done on Omegaven and I got the chance to talk about it to several nurses and residents and two of the attendings. Various CHOP personnel say it is "good stuff," and that they are working on getting it. But they have been "working on getting it" for a year, and that just doesn't make sense when so many other hospitals have been able to get it already. Peter isn't the best candidate to make a grand impression for Omegaven because of his portal clot and severe intestinal condition. But his liver numbers are impressive and the people who remember Peter also remember his liver numbers, so maybe that is statement enough for the benefits of Omegaven. Well, more to post later.