So, Zach went back to the GI doc on Friday and not much news from there. He wants him to have the hydrogen breath test, just for a definitive answer, he believes Zach's symptoms (he agrees that when Zach starts screaming after eating half an orange (on accident) that is the sucrose causing the pain) sound like CSID and his biopsies are suggestive of it. His reason for the test is so insurance will pay for the enzyme replacement "sucraid" which is apparently around $8000 a month. He would still have to be on a low sucrose diet or no sucrose depending on how he reacts with the medicine. At least this time when he has the test, his NG tube is already there so all they have to do is put the sucrose down his tube and it will be a lot easier on everyone.
Today Zach's nurse came out and did his check up a day early so she could replace his NG tube, after 5 weeks it was looking pretty nasty. All I can say is I definitely can not change it on my own if it ever came out. The tube does not bother me but it takes 3 people to hold him down and 1 person to insert it so it was quite a challange today. We also wanted to put the tube in the other nostril this time but it wouldn't go in so it has to stay in the same one. His poor skin on his face is so broke out from the tape already and who knows how long he has to have this. As much as I don't want a G tube placed sometimes I think it would be easier, at least that way, there will not be any more questions when people look at him....what happened? what's wrong with his nose? Enough for now...he has allergy testing tomorrow.