Tuesday was the day I had been waiting over 3 weeks for , or basically since they inserted the GTube (gastric feeding tube). Nothing has been right since that day. A recap of events: Surgery #14 was to insert the feeding tube since I'm not able to eat a whole lot of "real food". Two days after the insertion I got a wide-spread rash across my belly. They did skin biopsies (I don't even have to tell you how not fun it is to have someone stick a needle over 9 times into your nerve-sensitive belly), and the biopsies came back normal for the chicken pox/shingles they thought it might be. I came home from the hospital. Then we discovered that wherever the tube was touching my skin was blistering so bad that you could see an indent in my skin where the tube had "eaten" a trough. Kinda cool, since it started to form a sun ray pattern around the GTube hole, but very painful. Then the hole itself started to get extremely sore, so much that it hurts to stand-up with the weight of the tube pulling on it. This hole then started to look infected, but it was quite clear by this point that I was reacting to the tube materials (the blistering to the skin stopped when I put a layer a skin protector down below the tube). So the GTube team thought it best to come in and see whatever doctors needed to be seen to solve the problem.
Tuesday couldn't have come fast enough. The constant itch, the pain, the nerve sensitivity. It's making me tempted just to rip the tube out myself. The wonderful GTube nurse checked me out and agreed that it sounded like an allergy to the tube materials, as did the general pediatrician she called up to take a look. GI and radiology agreed that it was likely a tube allergy and that I was probably reacting inside the stomach and tube tract as well, which was causing the pain. But they didn't want to give me anything for the pain because it "could cause you to develop toxic megacolon". Ummm, did someone forget to read my chart for the part that says "subtotal colectomy"? I can't get toxic megacolon without having a colon! But whatever, I'll deal with the pain, just get the tube out of me. Radiology agreed that if no one had any ideas to fix the tube area, that they would switch it out next week for me since they can't do a replacement any earlier than 4 weeks because they could "damage the tract". Then along came someone who didn't completely agree with the assessment which changed the whole plan. Dermatology initially said that it looked like a tube allergy rather than just a skin infection, skin breakdown. They said that we should likely do some skin rubbings to see what materials he is reactive to before we go ahead and put in a new tube. Then they ended the conversation with "but we don't think it's an allergy". That completely left us in limbo land, a place I don't like to be. General pediatrics has sent me home with Atarax (a heart-safe anti-histamine) which has really helped bring down the swelling. They also sent me home with a warning that if, as they suspect, my stomach is reactive to the tube, we might see sudden bleeding and to get our butts back to the hospital if it happens. Great, love warnings like that. So, the next important GTube date will be January 7th. We'll be switching my tube into a Mic-key button which sits right flush with my skin (think about a beach-ball opening to put air into - same idea). I really hope I'm not allergic to this one!
But more than being allergic to the new one, it's disappointing that I'm still in a lot of pain. It's disappointing that I'm looking at the Christmas Holidays approaching and I'm begging time to stop because I'm just not up to celebrating. I have a feeling that this is going to be a "deja vu" Christmas where I spend the day exactly where I spent it last year: