Matthew's first Remicade treatment went pretty good. When we got there our nurse, Amy showed us around, where the snacks and drinks are, the toys and book, and told us we could use an Ipad or computers and such if we wanted to, and that we had the movie channel on the TV!He had a pudding and Root beer while taking his Tylenol and benadryl that they give them before the remicade. The IV team got there and that was the hardest part. Ryan, Amy and I were holding him and talking to him as one IV tech held his arm and the other tried to get it in. It didn't go so well, the techs had to switch spots and try a second time. That time he got it. The next few minutes consisted of getting things ready and Amy trying to explain things to us. Matthew got sick of listening and waiting and asked her "can we just cut to the chase?" We all thought that was funny and totally forgot what we were talking about. Ryan stayed for about an hour of the treatment. Every 15 minutes they had to ramp up the dose. After the first hour of that they ramp it up bigger and let it go for 30 minutes. That didn't go so well. Matthew got a really bad stomach ache and started to sweat and get a headache. Amy slowed it back down for a while and then he took a nap and felt much better. We got done at about 12:45 with everything. He started to feel good pretty much right away. He was a little tired the rest of the day but did great. We had an appointment in Endocrinology after the treatment. There we met with 2 doctors to make sure he is growing OK. He is in the 10th percentile for height right now but with the meds they hope that will speed back up. His bone density looked right on track. They say it can get really bad with crohn's. His bones are "aged" at 7 years! So that is great!
So far since the treatment Matthew has not stopped eating! He is feeling awesome and diarrhea has slowed down for now! He has had solid stools for the last day and 1/2! We meet with his GI team, Dr Tung and her nurses, along with the dietitian on Monday!
Dr. Tung is awesome! I've worked with her before.
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