Welcome to Gary's Mission to Remission!
Juvenile Dermatomyositis, a rare autoimmune disease.
Wednesday, July 14, 2010
Gary's infusion went smoothly today. Excellent nurse who had everything in order. She had everything rolling the moment we walked in the door. It's so nice when they are on there game like that. The one thing she didn't do was ask questions. Usually if you are about to administer drugs to a person, especially a child, I want to know how they are doing and why they are getting the treatment just so everything jives. That's ok though. I knew. Everyone is different. Gary's anxiety is mounting each time now. So I am hoping that tomorrow a decision is made to start spacing these out further apart. He was delighted that Elexis, his 8 year old sister was able to tag a long today. I was a bit annoyed. My daughter is my little Momma. She often speaks out loudly, "it's ok buddy." She even would run to get the nurse if the IV pump went off. "Excuse me, are thingy is going off." It's very cute but sorta my job lol. Gary fell asleep almost instantly once the benadryl hit his vein. IV went in the first time. Last month we ended up in his foot. But I went back to the numbing cream and wrapping his arms in warm blankets. I was starting to consider having a port put in. I have decided that if for some reason he turns in another direction and requires more frequent IV's then I will insist on a port. But right now its looking like we could start heading away from that. I listened today to few kids getting there ports accessed. Screamed just as loud. One child's couldn't be accessed for some reason. Those were some loud tears. Brings me to tears. I am not even there Mom. Several times I found myself wanting to put my head between my knees and find a happy place. The 2 and under age group is especially rough. It doesn't seem to openly effect Gary. I think he is glad his is in and thats not him again. I could not wait to get home today and get some training. But the hospital has kryptonite underneath it or something. It sucks the life right out of me. I could barely stand up this evening from pure exhaustion. I was really looking forward to some training. : ( No go.