I just spoke to Diane and she said that Cody just woke up about noon. They started to run a different antibiotic yesterday. Vancomycin is one of the drugs that Cody has a problem taking. He gets what is called "red man's syndrome." His face would swell and turn bright red. Unfortunately it is a drug that covers a spectrum of things that the other antibiotics don't. So they decided to give it to him over a long period of time and they pre-medicated him for it. It's seems to have worked. He did not have a fever since yesterday afternoon. They had to watch him very carefully while giving it to him so they had to keep turning on the lights in the room last night. He also had to be pre-medicated for platelets this morning. I'm sure he is going to be grumpy today.
Cody's doctor finally got back yesterday. She is from Palestine and travels back there once a year. Unfortunately for us she left just 2 days after Cody was re diagnosed. Her name is Dr. Abu-Ghosh and she is an angel. They have a great group of doctors which you can read about here. Dr. Shad is the lead doctor of the group and she is one of the best ever. We feel truly blessed to have found this group.
I'll write more this evening when I get in.
Well I'm here and hanging out with Cody. I don't know how to start this. This is one of those times where I feel like I'm hitting rock bottom. I'm not sure if Diane is feeling much better. Cody is sleeping now after a knock down, drag out, melt down. I'm becoming increasingly concerned about Cody's mental state. He has had two very bad nights of no sleep or very little sleep. I'm not talking about him being grumpy, moody or even angry. I'm talking all out rage... I'm deeply concerned that he is going to hurt himself. These are sessions that we would see after he would wake up from sedation. Now it's so bad that if you say something that he doesn't like or if he has to repeat himself he has a total meltdown. I had to physically straddle his legs and hold his arms and hands so he wouldn't hurt himself. I really want to talk to his doctor tomorrow and voice my concerns. Another sad point to this whole thing is that Justin and Daniela had to see all of this. They must be so confused by all of this. I know that I am.
Cody has lost control of everything in his life. He is forced out of school, his home and his bed. He has to stay in a hospital room hooked up to an IV 24 hours a day. He is forced to take oral meds at all hours of the day and night. On top of all of that his feels like shit. He has parents that are forcing him to do things that he doesn't want to do. He doesn't understand that they are doing this for his own good. This is one of those times when writing in this blog helps me more than I could ever say.