The Doodle is completely out of it. He can barely walk on his own; he's very wobbly. I can tell he doesn't feel good because he didn't want to get his picture taken. He just looks very sad.
Since the weekend hospital drama I'm feeling like my standards have been lowered where my happiness is concerned. I had to go to work this morning at 6:30 a.m. so I called my mom a couple of times to see how the Doodle was doing. When she told me he had one grand mal, I found myself relieved that it was only one. Never before would I have been relieved to hear that he had a grand mal. I guess I've lowered the bar. Now if we don't land in the hospital I will consider it a good day.
At least our nurse was here this morning when he had the seizure. She was able to time it and check his vital signs during and after the seizure. He is not the same baby he was last week. I watch as the seizures chip away at his already medically altered personality. He looks severely drugged and tired and is cranky yet unresponsive. His eyes look vacant and his dark purple circles look like they might hurt. He could barely clap his hands. He is going in and out of sleep fighting it every step of the way; not sure if this is from the multiple seizures or the high potency drugs in his system; probably both. It's almost like he is afraid to go to sleep because he knows what is going to happen to him.
If you would have asked me last week, I would have optimistically told you I didn't know how much longer we would need a nurse since he had gone the whole week without either kind of seizure.
I'm waiting for a call back from UCSF so that we can see what our next step is going to be. With such limited options, I have a pretty good idea what they are going to tell me.
They will tell me to just sit back and wait.