Journal entry by james witzman — 5/9/2017
Jo's feeding today was stopped at 0400 with a plan to proceed with extubation about 6 hours later. Don't want anything in his stomach during the process. We had a long discussion with the Dr.s yesterday I'll try to cover their points as best I can. I didn't have the strength to do it yesterday, sorry for not updating more frequently.
I did ask the Dr. about his thoughts on extubation today and he was confident Jo can manage the transition off of the machine effectively. In fact the settings supporting his breathing right now are minimal, he is out performing the machine on his own.
I did ask the Dr. about his stability overall and his concerns about Jo's critical status. We remain in PICU, with abundant support, Jo has banked several solid days of rest and healing, his vitals have been strong, and although setbacks do occur swelling on the brain should have almost completely subsided. This is all encouraging news, the long journey has only just begun, but Jo is strong and every day he heals a little more.
I will update as soon as I'm able following extubation today. Initially it will be tough to hear him breath as the muscles in his neck strengthen and get used to doing it on their own. It sounds like deep snoring. Over the next few days we are confident that will resolve, and one less machine will be hooked up to our precious baby boy. Jo and God are once again ready to amaze us, we can feel it.
Jojobinks I'm not ready to accept the "best guess" about your future. Everything about you has been amazing since they day our eyes met. You were a gift God, he is here with us. God has a plan, and we will all be witness to his strength through yours. We will never leave your side, and God will not release your hand. He is leading you back to us. Keep fighting sweet angel, one miracle at a time. Let us see your eyes and that smile, there's nothing on earth we want more right now. Love you to the moon and back sweet angel, mommy and daddy are here.