Increasing feeds and back on kefir

We are up to 165 mL elecare (24 calorie concentration)! Peter advanced to 30 mL per feed a few days ago, and today we have gone up to 35 mL per feed. He is still on the goatmilk kefir (10 mL) daily. We had tried goatmilk yogurt for a few days, as well as trying nothing with probiotics in it, and feel that kefir is the better choice. The bacterial overgrowth odors seem to be gone after about the fifth day, and the ileostomy looks like it is well-digested again.

We had a possible back up from the stricture about two weeks ago, where the G tube turned brown, then the fistula turned brown. (Two posts ago.) We didn't know what to make of it, but in talking with Dr. Kamin, it could have been the addition of safflower oil enterally. We are not going to pursue that further unless Peter's essential fatty acid profile tilts much further. His Omega 3 levels are high from the Omegaven, while the Omega 6 levels are low. This is expected on Omegaven, but should balance out once he gets on more feeds.

Also of great interest to us was finding out just what color is "normal" for ileostomy stool! Dr. Kamin said that on the elemental formulas like Neocate and Elecare, stool can be dark green, almost black. What we thought was old black blood (melena) and the black flakes that seem to pop up often seem then to be more likely to be what Elecare poop can look like. With additional reading online, it seems that consistency can vary, along with color too. Peter's ileostomy output has not increased, but we see such variation and know how easily he has bled in the past and have been told to still remain watchful and cautious as we advance feeds. With this knowledge and continued prayer and a feeling of calm now, we are increasing the feeds every 72 hours, by 5 mL per feed per day. He is fed five times a day, so that can add up in time.

Our mickey button is still a leaky mess. That of course doesn't help with getting all of the feeds into him. Both the mickey and the old G tube leak, so we went back to the mickey last week, hoping that its lack of hanging tubing would take some of the tension off the hole. Either device is leaky based on position. We have been told that we can try to shrink the hole by removing the device and putting on an ostomy bag, and then being watchful that the hole doesn't close. He has had this tract for two years, so the likelihood of a fast closure is not probable. We tried this method to shrink the hole just after the oil incident above and had a little success in shrinking the hole, but it is enlarged again. We are trying to avoid decompressing Peter at night anymore so there is no tension from the tube attached to the mickey button, and it is quite packed with aquacel and allevyn now to avoid movement. But Peter manages to move it enough when he rolls on top of someone or on top of one of his toys, so that it leaks and we lose some of the feeds. The hope for now is to keep pushing the feeds, stablize the mickey as best we can, keep up with the G dressing changes, and maybe with the extra nutrition he can try to heal that hole a little. If need be we can put the ostomy bag on him at night so he at least gets his feeds in, but I really don't want to be up several times in the night checking that the hole is still there either.

We go up to Boston in another week for an upper GI and an Omegaven check-up. Perhaps we will have more answers as to where we are headed with Peter... whether we need to go back to planning for transplant or whether we see some progress and continued hope in bowel rehabilitation.