Feeds and bleeds

We had to open the G tube to drainage for most of the day yesterday.

We have been having a lot of G site leaking the past few weeks. A week-and-a-half ago we had moved to a mickey button which leaked 4 to 5 ounces a day, but then we ended up going back again to his old style G tube with five inches of hanging tube which leaks more around one ounce a day. (How I long for the days of no leaking and dressings that lasted for several days!)

During one of yesterday's G tube dressing changes, we saw brown drainage leaking out around the G tube instead of clear or milky with formula. While cleaning around the site it began to just pour out around the tube, so we hooked the G tube up to drainage and unclamped it, collecting another 80 mL of dark brown fluid immediately. Within half an hour we saw it move on down to the fistula, and by the end of the day saw it coming out the ileostomy. As it moved on down, the upper areas cleared up. The question is why it happened.

One possibility that stands out is that the stricture just above the ileostomy is not letting everything through. We had increased the volume of feeds the day before to 140 from 125. When we have tried to just increase the density of formula from 24 to 26 cal, we have seen black tarry stool, also indicative of bleeding in the GI tract. Can he only process ap to 125 mL of 24 calorie formula a day? It is odd though that we were able to bump him up so quickly to this amount, arbitrarily stopping there, and then this is by coincidence his balancing point.

OR we may be seeing this problem related to the addition of safflower oil enterally just under a week ago. Dr. Kamin had asked us to try giving Peter safflower oil enterally to try to balance out his essential fatty acid (EFA) profile. On Omegaven as his sole fat intake, he has had a much higher amount of omega 3 and really no omega 6, and there is some concern that he really should have a better balance of fats as a growing child. This may just be a theoretical concern, but Dr. Kamin said that there is also some evidence that long chain fat exposure to intestinal mucosa will provoke heightened adaptation response, so it seemed like it was worth a try. Since we have started it, we have seen the black tarry stool and this bleed yesterday. So, is it the oil? FYI, elecare does have safflower oil listed as its second ingredient... however it must be somehow reduced that it is in an elemental form. We have been giving him the extra safflower oil to drink poured right out of the oil bottle. I think we will hold that extra oil for now.

Or, is it that Peter just can't use his intestine and we will continue to see bleeds? Is this one of the symptoms that the label "intestinal failure" refers to? We have seen lots of bleeding in the past with Peter, and it seems like a lot of it revolved around trying to feed the gut. However, those bleeds often were more frank blood, with lab values suggesting that the liver was more at issue with higher bilirubin, elevated coags, and LFTs that were much more elevated. Peter's labs still are not totally normal, but this is expected because of the portal vein clot which is still responsible for portal hypertension which then still has an effect on the liver. The labs are remarably improved from where they were though. Bilirubin around 2 vs in the teens or 20s, coags down from 1.8 to 1.2, LFTs near normal but not completely normal. He is not needing transfusions anymore and we have seen his hemoglobin actually rise on its own since we have added iron to his meds. There is a link between feeding the gut when the liver is sick, which makes the liver more sick, and Dr. Puder kept emphasizing that before Peter's feeding tube was removed. At this point where Peter's bilirubin has dropped so low and is staying low, he should be able to use the gut though without further injury to the liver. We think. Routine labs were drawn earlier today and should help.

Maybe Peter's very delicate, newly awakened intestine is really just not ready for anything more, much like a newborn's, and it will just take more time??? Is this part of the "Peter is writing his own book" that is going to continue to unfold.

We resumed feeds again this afternoon. Peter really never seemed distressed by the bleed yesterday or with the melena before that. He was really not very happy with me telling him he could not have any more "milk" (elecare) yesterday afternoon or earlier this morning.

Yogurt and/or kefir are still part of our routine... 1 tsp yogurt a day or 2 tsp kefir, both made of goatmilk. I don't think they are the culprit. I did tell Dr. Kamin about adding it in and he didn't comment either for or against it.

Peter's stool looks digested and more like his usual again tonight.