Tuesday, December 16, 2014
Day +112 So a little good news today. TPN can be hard on the liver and because Katlyn gets 20 hours of feedings a day and her liver enzymes are elevated. So we will be cutting back on the tpn. At first they were going to allow Katlyn to be on a digestive soft diet to make up the difference, but then decided that they would put a feeding tube in. She did manage to get some pretzels and a pancake in before they made this decision. So the feedings will be super easy on Katlyns gut and allow her to get all of the nutrients that she needs. The great thing about this is that so long as everything goes well and she can tolerate the feedings well, we should be able to manage this from home. After a few days of just the feeding tube they may slowly reintroduce food again to her. I think this will be a safe way to manage her problem with her gut. This will allow her to get stronger without putting too much stress on her stomach or her. With regards to the scope it does not seem as though they can say exactly what is going on. They have said it doesn't look like gvhd which is great. All the tests seems to come yoo with nothing which is great. So we are thinking it is the norovirus and the fact that the balance was upset when she had her transplant (maybe the chemo). Because she cannot absorb nutrients properly, it seems as though she cannot heal her damaged gut and it just keeps getting worse. She was in very upset by all of this especially where they gave food back only to take it away again. We just don't ever want to see her in the state she was in. Hopefully this works and we can start working on a plan to take her safely home.