Journal entry by james witzman — 5/8/2017
Jo has been steady all day through the night. Coughing through the flu clearing and breathing clearer each time.
Yesterday was tough for reasons other than Jo's stability.
The on duty Dr. Is not my favorite, she lacks a bedside manner, and I don't detect much empathy despite her job (PICU). She seems content to emphasize her clinical analysis of Jo. Jo's clinical analysis from a brain perspective has never been positive. She uses words like "unlikely", and phrases like "quality of life", and "making life decisions."
She spoke with Alex and I about the removal of the ventilator in terms of "this is a life decision". Jo has been out performing the machine, and the nuero Dr. was certain that his respiratory system was not affected from the injury.
The last thing she reminded of us was "the central brain damage is in an area that controls consciousness". She said it so calmly and matter of fact it's almost like I didn't hear it. She left it at that, which was fine because I was too stunned and crushed to ask anything anyway. The thought that he may not wake up, is a thought we will not consider, Jo will fight, he will open his eyes, he just needs time.
Today @1030 we meet with a team of Drs to discuss what to expect in the coming days. This includes what we do if Jo doesn't respond to breathing on his own. There are several options, all of which would keep Jo stable, they just need to hear from us on what we want to do.
It seems that some of the "whens" from the nuero Dr. have returned to "ifs" and it absolutely crushes us as parents. We are using all of our strength for faith in Jo to show everyone what he can do. My baby boy is in there, he can hear us, and he is fighting to get back to us.
Today we need to focus prayer and thoughts on the tube removal. I'm not sure what time today but please keep us in your thoughts. One day at a time, one miracle at a time.
Jojobinks, I drove home last night because I couldn't sleep. I am here outside your room and I feel your presence. I know you are fighting, I am so proud of you. God is with you, healing you. Your pictures are everywhere and I feel you looking at me telling me to be strong too. I will not let you down. I want you back so bad it literally hurts my body. I've never experienced this kind of pain. I would give anything to see you smile and say you love me. Mommy and daddy are here ready for your next miracle. Be strong Jo, you are in God's hands. He will not let you fall. Love you to the moon and back our sweet angel, seize this day...