Welcome to Gary's Mission to Remission!
Juvenile Dermatomyositis, a rare autoimmune disease.
Sunday, April 18, 2010
We had our over night infusion on Friday. Gary did well. He is starting to be a bigger boy. He realizes that sitting still and cooperating while they jamm a huge iv needle into his hands, well is just not necessary. I am so proud of him. He has found his fight. He kicks, grabs, twists, turns, screams, yells, and cries. He has always looked like a fighter but would really just gave his little hand over. He would still cry but never really figured out he didn't really need to just sit there. It does stink for everybody else, well and him because we had to do a wrap down on him. They take a blanket and swaddle him. Similar to the way they wrap a newborn. The best part of it all though is the prize box. When the tears and the heavy after burn sighs had passed, he picked himself out Seattle Mariners hat. He looked so adorable in it. The got his meds going which made him sleep and sleep. We struggle with his blood pressure all night. Usually its to high. This time it was to low. At one point it was 95 over 25. They kept a close eye on him. A doctor came in at two to look him over and listen to his heart and repository counts. It started coming up here and there. I began to wonder if they gave him a little too much benadryl intravenously. My favorite part was our roommate. I feel bad that for all the families that are forced to share small rooms. The baby cried nearly all night. It was actually a bit traumatizing for me. We had the inside of the room, the side without the bathroom. Which meant if Gary or I needed to use the bathroom we have to go into there side of the room. Literally walk thru there space to get to the bathroom. I used the bathroom out in the hall so I didn't have to disturb them. Then every time someone would go in or out of the room, they failed to close the door. All night long. We were in a busy part of the hall so I was forced to get up, over and over and over again to close the GOSH DARN DUMB SMELLY DOOR! I was losing it. But it was only for one night, so I held it together. Unfortunately that just deepens the pure hatred of having to be there. I pray that the SCH expansion eliminates ALL shared rooms. Especially when they think it is a great time for a weigh and measurement check of a sick baby just happens to be at midnight. Strip the poor thing down to nothing once she is sleeping. Yep! I would scream too baby girl. Anyways, I still don't think I have recovered. On a much happier, lighter note, Gary's appointment when well. His levels are good. He has only two that are still elevated, but only slighty. His strength has returned since we began cytoxan. So it seems to be his drug of choice which is not the greatest because its not exactly good for him.