We went into G.I. with a few frustrations:
First of all, we were irritated that we couldn't get a handle on her leaking. Karsie has been leaking out of her G-tube for a while now, and sometimes it's quite a bit, and sometimes the entire Pacific Ocean comes out of her stomach hole.
Also, we have been frustrated that her site continues to become irritated and itchy for her. (irritated and frustrated at the situation, not the doctors).
So after a ton of consulting with each other, the plan is as follows:
1. We will try to kill her granulation tissue with Kenalog, a medicine/steroid that reduces tissue. Instead of just giving it to her for 7 days, we will give it to her for 14. There was serious consideration given to just burning it off, but they didn't do that. If the tissue doesn't go away, however, they will probably have to do that as the tissue is the main culprit of the leaking.
2. Also, to reduce the leaking, they have decided to reduce the amount of volume given to her. In order to do this, Karsie will have to be put on a higher calorie per oz. diet. Hopefully this will do a few things. We want it to reduce leaking, to help her get more hungry, and also to gain weight. She was about the same (a little more) than when we went in 2 months ago.
3. To reduce the rash, Michelle actually researched and suggested ILEX, which is a barrier paste to go onto the skin. We asked our omphalocele mom friends and after a bit of hunting found out about it, so we asked the doctors and they ok'd it. So far, it has been miraculous. In just a few days her skin looks almost completely normal.
Next up...development.
