Day 3 in the EMU-Moved to the PICU

Today we moved to the PICU (Pedatric Intensive Care Unit) so that Evan could be put on what is called Vallium protocol. They give him high doses of Vallium and he has to be put in the PICU to monitor his oxygen because Vallium is a respiratory suppressor. So we started the vallium today around 2pm(it is 6:40pm as I write this). So he fell asleep pretty quickly. His EEG is still very active while sleeping but it is looking better in the awake times. He is still have frequent seizures and I think I will have a better idea tomorrow if the Vallium has a good effect on him.
We are also starting the Ketogenic diet tomorrow. He hasn't had anything to eat or any formula since last night at 8pm. I thought we were starting the diet today so I am kind of annoyed that he is being fasted because he keeps asking for milk and we have the formula but we have to wait to talk to the dietician to get the volume of formula that he can have each and also to be taught how to admisiter the diet. Right now we have to put cotton balls in his diaper and then I get to put them in a syringe and squeeze the urine into a cup so that we can see if he is in Ketosis. Oh the fun you can  have with a child with special needs.
Evan's neurologist came in today and we had a great conversation about what our goals are for Evan. He wants Evan to be completely seizure free and have a better EEG. I told him before he said this that I just wanted less seizures. I would even take 10-20 a day. He said well I want him to have zero. I love that. He hasn't given up on our sweet boy. He isn't going to say that this is the best he can do given Evan's brain malformation. He wants the best for our son as much as we do. So he said we would be here likely to the end of the week. I am ok with this as I don't want to have to go home and come back again in a few days or weeks or even a month. One thing that is so comforting in this crazy times is that we or Evan have a great team of Drs. who care about him, a great hospital with awesome staff to turn to. I also want to again thank everyone for their prayers and thoughts.