Setbacks and progress

Last week we had to stop feeds altogether after experiencing bleeding from the ileostomy, fistula, and even backing out the G tube. (It was "coffee grounds" in appearance for those of you familiar with GI bleeding). So the question of course was, "why now?" We had actually decreased the concentration of formula because his ileo looked milky in color a couple of days before, and we had not gone up in volume. What was different though was that he was on enteral cipro given through the G tube for bacterial overgrowth in the small intestine. He has routinely been treated off and on for bacterial overgrowth when the ileo gets a very strong odor. This time though, he had been vomiting after the morning dose, which is unusual. After seeing the bleeding, and looking for a reason why, I googled cipro and bleeding. Apparently cipro can cause GI and intestinal bleeding. Now whether this is really the culprit we likely won't know, but we stopped the cipro and stopped the feeds to give the bowel a rest, and 24 hours later the bleeding stopped and it has remained stopped. That was Wednesday. Today is Monday and we are beginning feeds again, cautiously again. So far, so good.

A close setback was the drastic change in the amount of lactated ringers (another IV solution that he gets in addition to TPN) that he needed. We went from 400 mL a day while up in Boston, which was down from 430 the week before, to 275 to where we are now which is still fluctuating between 150 and 200. This is all in a period of 3 weeks. A year ago his lactated ringers was around 1300 mL a day because he would lose so much from his upper GI tract. Now he loses so much less that we can run that much less lactated ringers solution. We think this is all good, but if we don't keep close count it is easy to have Peter get so much fluid that he begins to gain fluid weight and his abdomen begins to get big again with ascites... which then can affect the bowel. He had gained a pound in a week before we got to a point where we were able to figure out his lactated ringers needs again. With all that being said, it could be that the fluid in the abdomen made him more prone to bleeding and that is the source of the bleeding described above. Or it still could be that he still has enough portal hypertension that he will remain prone to bleeds period, fluid in the abdomen or not.

Progresses are several. First, his last albumin was 3.0. We haven't seen his own produced albumin in the 3 range for year and a half, I think. That is a good sign of liver function... the last one was 2.7 though, so we will need to see more 3's to believe it. Second, he is crawling off on his own now, to the point we have had to install a lock on the basement door and are making plans on how to install a gate on our odd staircase which has no banister. Third, I left for the weekend to attend my brother's wedding, and Peter and my wonderful husband made it through the weekend beautifully. I haven't left Peter since May 2006, when he was on TPN, but without all of the dressings and potential complications that he now has. Peter doesn't necessarily NEED ME, but the fact that he has been well enough to even contemplate leaving is the big progress. Even with the bleed mentioned above, he has been doing well enough to feel it was OK to leave. A few months ago we had to deal with bright red fistula bleeds which needed intervention to stop the bleeding and often needed an entire dressing change to go along with the intervention. He also had the elevated CRP that no one could figure out that we were waiting to explode into sepsis, which fortunately never happened but had huge potential keeping us jumping every time he felt warm or began to get fussy. How nice it will be if Peter continues on this plane of wellness.

Funny, if you tell someone the number of ostomy bags your child is wearing and that he is fed via IV and that he has nursing help six days a week, how ill that child sounds. But, if you look at how things were and where we are now, he well he sounds. I guess we will see how well he actually is sometime in August when we go back up to Boston for more tests and imaging of his bowel.