❤️ Update 11/26 4:30 am

Last night I was getting ready to go to bed.  The room was dim, Ethan was zonked.  I received a visitor. It was Ethan’s surgeon.  He came just to say hello and see Ethan.  He said that he has never seen a kid on ECMO be so awake before.  It is unheard of.  It is the buzz in ICU. This just speaks volumes of Ethan’s attitude and drive.  I thanked him for his magical hands and his great craftsmanship with Ethan’s new heart.

Ethan woke up in the night.  He was in pain. It seems his body is acclimating to the morphine and fentanyl. He wanted to get up because he had to go to the bathroom. I had a brief mental image of what that would look like with his chest open.  His insides would be on the outside.  Yikes.  What a mess. No.  Let’s not support that idea.

I was trying to describe to him that he had an external catheter and he could just go.  But he was worried he would wet the bed. 

He also is realizing that he has been in the bed for a while and he is worried something bad happened. He panics when things don’t go “as planned”.  He didn’t think he was in ICU. He doesn’t like when new people come in and he doesn’t know why.  The more people he sees, he worries and questions.

His breathing tube is agitating his throat and his chest became painful so they supplemented his pain/sedation medication.   

These periods of waking up were more frequent than previous nights. He required more pain/sedation medication. A few times. 

The nurse asked him if he wanted to listen to Ocean noises to relax.  He didn’t.  I asked him “do you want the office on?” He did.  He got a hefty dose. The conversation has already been had about addiction. There is a plan in place for that too.

It is so hard to watch him. I know he needs time.  But time is hard to wait for. Patience is key to a successful wait. Patience is the ability to wait and keep a positive attitude. I will be as patient as I can.  But I want this process to be over with.