Yesterday while I was at the hospital I had many conversations with the doctors. Nick slept well on his bed of ice and he was to be taken off his sedation again until his surgery at 1230 for the G-tube (which didn’t happen because he has small fevers mostly caused by his brain healing).
About 20 minutes after the sedation was turned off he was awake. His big bright eyes where open, but they were just staring into space. That is Nick’s waking moments now just catatonic looking towards the lights in the room just like when he was a baby. When you speak to him there is about 1 or 2 seconds that he completely looks into your soul. What does that mean?
I massage his hands and his feet and sometimes he lifts his left arm up and then we arm wrestle. He is way more peaceful without his mouth ventilator so at least that brings me some peace.
The first doctor that came in was a cardiologist that specializes in heart rythums. She said she has been studying all of Nicks EKG’s and she feels strongly that his childhood problem of supraventrical tachacardia came back and created a irregular beat which stopped his heart. She said if I didn’t find him that day he would of died within 3 minutes. She says the stars aligned that day because each thing Nick had going into the hospital would not of really harmed him by themselves. It was the 3 punch combo that got him. He had a cold leading to pneumonia, he had contracted The West Nile virus and he already was set up with a small electrical short in his heart.
This is the biggest problem we have right now. The heart failure. The lack of O2 to is brain which all leads to brain damage. Trying to figure out how much brain damage he has is key here. That is where is neurologist and the other nuero docs and nurses pondering.
There is only 3 tiers of recovery for Nick. One is full recovery but with a speech delay or a walking problem or something minor to deal with.
Tier 2 is Nick is in a partial vegetative state which means he can understand some commands but that is all.
Tier 3 is Nick is in a permanent vegetative state and for Nick this is a very very long life like this.
How does one deal with this kind of news?
We had an MRI on his brain yesterday. We are having a lumbar puncture today so we can see if the virus went into his brain causing encephalitis. I am gathering info about docs who specialize in West Nile and I will today be looking into various brain doctors. I need to look into long term care for Nick because The Rehabilitation Institute can’t take him until he can actually respond in some way. There are Long Term Care places that specialize in cases like Nick’s and one place is at Holy Family. I am going to take a field trip there. I will be looking up other places too.
All the doctors have ended all conversations with me with this caveat:
The brain is such an unusual thing. We know much about it , but not all and because of that nobody can absolutely say his brain won’t rewire. They aren’t trying to give me false hope but they do want to give me the big picture. So I asked them since he is basically healthy now except for his brain then can I do all the things I can to stimulate it? They said yes.
I called his friends he hangs out with and they all came to the hospital last night and surrounded him. They talked about what was happening in their lives and you could see on his heart monitor his heart and body responding. He electrically is speaking to us. He can make machines beep and monitors go crazy and that is the one thing that is keeping me in the hopeful lane. I know energetically we are all electricity. I have received emails from people who had less chance of survival then Nick and now they are recovered.
I will be playing soccer matches in his room and bringing his friends with guitars to play by his bedside. He is getting a heavy metal playlist and last night we figured out a way that the boys can come and game in his room. Anything to create a memory or spark for his brain to wake up.
I am still taking this all one moment at a time. That is all I can do right now and I can research and ask questions and find the best path for all of us.
Let’s hope today gives me something new to hang on to.