We did not sleep last night, as Cody got progressively worse with his confusion and amnesia. He got obsessive and persistent and he was talking to his phone without it being there. He would not let me lie down. We tried movies and every show on the tv but nothing could calm him. I was out with nurses letting them know that it was getting worse. It was so upsetting to watch. By 6 am, I was getting persistent. The neurologists and our doctor was paged. A repeat MRI was ordered for this morning. I spoke with several different doctors throughout the day. Cody made it through the MRI and there 3 neurologists waiting here in the room when we got back from the MRI. They said they saw something more in his brain and recommended a spinal and another EEG. I lost it at this point. Our doctor came in and was worried about a spinal due to Cody's low platelet count. This worried me to see her worried. We were getting settled in the room and Cody was having some trouble breathing so the nurse practicioner was here. He started to yawn, one after the other. Little did I know, but this was seizures. The EEG confirmed it. Our doctor returned a few hours later to tell us that this behavior is from the anti rejection drugs he is getting. He still has the virus but it did not go to his brain. The two drugs were causing the inflammation. We had a new plan to treat the seizures and introduce a new anti rejection drug from a different family of drugs. I cried again but I felt we could deal with this better than an infection in the brain. We would not have to do the spinal now.
I cannot begin to explain his behavior. He was adorable in it but totally confused and I hope he does not remember any of this. However, it is something I will never forget.
On a positive note, Cody's counts are coming in, slowly but surely. He ended the day being at .7.
We will take it!
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