Gary turned five years old on Wednesday. I knew on Tuesday he needed to come in. I knew after they did not admit us during the ER visit, that we were living on borrow time. I called and asked we spend his birthday at home. No one ever called back so I took that as a yes. By Thursday, the diarrhea was still getting worse. I made the call. They had us come in on Friday for a clinic and planned to be admitted.
It was good timing because on Thursday night, he ran a low grade fever, again. We got to meet our new doctor in clinic. She did a question and answer session, and catch up. She could see he was miserable. He needed to go to the bathroom a few times during the clinic visit. She said I am glad you brought him back in. He needs to be here.
Things happen quickly. I will have to get use to her new style. I like her aggressive approach. Right from the start of getting this whole thing put back on a different track, we stopped tacrolimus. So far that is a total of Cell Cept, Tacrolimus, and Enbrel. The plan was to admit him for a Remicade infusion. Remicade is used to treat IBD and JDM, so like I posted on the JM Mom's Board, it suddenly became a might as well, we need to do something. Of course they put him on Nothing by Mouth. I told them please don't do that. Run a high dose of steroids then don't let him eat. We got water, broth, and a popsicle. This morning he was up graded to a GI Limited diet. Mash potatoes, crackers, Pediasure, banana's, rice. Oddly, once given the clearance to eat he only had a graham cracker and the Chocolate Pediasure. The chocolate pediasure filled his tummy I think. I let the nurse know however, within 20 minutes he went 4 times. She didn't seem concerned so. He has been sleeping a lot. He slept 14 hours, and is napping now.
The plan now is to run Cytoxan and IVIG. We should be able to get out tomorrow. Then come back in two weeks for Rituxan and Pamidronate. Our pamidronate infusions she moved to once a month. Cytoxan will be once a month. Remicade will be in another two weeks, then 4, then move to 8. She does not know how long to run the Remicade. She has been communicating with one of the doctors that came back in June. They recommended the Enbrel shots which we noted no marked improvement or difference. So they think starting Cytoxan again is a good idea with the Rituxan.
This is all a lot.
This will be hard to take him home. Not knowing.
Gary's veins are irritated by all these infusions. He screams when saline is flushed through. We always stop to make sure his IV hasn't blown. But it is just that his body is irritated. How do I let them keep giving him all this stuff. I see pink eyelids. I see it. I see the JDM troll in the back of the dark woods rolling on the ground laughing and celebrating with evil. Well I am standing at the edge of those woods. Coming to get him with a baseball bat in hand. A beating is in order. That is how.
Thank you Summer for your note : ) I know you asked a few questions, I don't have the note you posted in front of me to answer.