When Nick was very little like 2 or 3 he and his twin sister Emily used to eat scrambled eggs with small amounts of various spices which in our home we called “Ficey Eggs.” This was almost always a daily request until one very uneventful day Nick was eating his eggs and he started gagging. Not just a little gagging, but the kind of gagging you would refer to like a cat trying to release a hairball. It was dramatic and from that point on we have always lightheartedly teased him about it. When Nick had to get molds made at the dentist or when he got braces he would get all gaggy. This is just a funny trait he has until he was on this ventilator.
Nick has been off sedation for about 20 hours. The last 8 hours has been his living nightmare and truth be told as a parent this nightmare is a combo package. Nick wakes up every 30 minutes gagging on the tubing that is lodged in his throat. The more panicked he gets the more it happens and which leads to more suctioning. You would think that suctioning would allow you to feel better by getting all the saliva bubbling in his throat and in his mouth, but it actually agitates him more and he may think he is drowning .
This is the time I never wanted to see. This is the time that brings back the worst memories from a past experience with my mother on a ventilator. The minute she saw the suction tube you could see her pulse rise her eyes widen and the look of fear like a lost child in a department store. It was fucking awful.
Because of this glorious experience I have made my brother, sister, and husband promise that if I ever had to be on a ventilator that I want to be on a tracheotomy vent. It seems way more humane. I spoke with the doctors today about changing Nicks to that kind of vent and I will definitely revisit it later when the doctors make their rounds. My logic is that It would bypass his gag reflex and I think help him not panic so much. It is really dumb to think someone wouldn’t panic being on a vent but it’s the way he panics that makes a difference to me.
The Intensive care doctor came in and told me he thinks Nick is in a sympathetic storm. It happens when your brain is trying to heal and find new pathways but gets caught in a cycle of “flight or fight” mode. They call it “Storming” and inside Nicks beautiful body is messages that say “danger, danger” as if he is being chased by a tiger. It is useless for Perry and I to say relax or calm down because how could you do either when you are strapped to a machine that is breathing for you.
The CT scan came back showing something in his lung, but nobody knows yet what it is. It is most likely the cause of his infection. His fever is staying steady which pisses me off and he is still only responding to me. This last part stokes my ego I guess, but it is not good for the docs because for them it isn’t a true diagnostic tool that would show how much trauma the brain has endured. The other bad part is when he is feeling like he is choking and I am trying to calm him down our deep connection gets in the way. He wants me to help him and I can’t and for both of us this is horrible and sad.
So this last go round I tried two things, one was singing to him and singing the Ganesh mantra. The other was just laying my hands on his body praying every prayer that popped into my head. Once his eyes started to slowly start to close I would tip toe away so he could self soothe himself to sleep like he did when he was a little baby.
Waiting for the doctors to round up. Stay tuned.