12/2 8:30 am

 

I just signed the paperwork to allow the doctors to place lines for ECMO. The good news is, they will be placed into his leg vein and artery. I was so worried they were going to open him up again.

Ethan is on maximum breathing support and is still having these crisis moments when his oxygen level dips down to 12%. He turns blue. It is a color that I know I will be triggered by in the future when I see it.

I could get caught up in the “why is this happening to him?” mindset but I know that isn’t helpful at all. However, it has crossed my mind.

This morning, since he is on the paralytic drug again, they taped his eyes shut. I know this is to protect his eyes since he can’t blink. I hate seeing him like that.

Because he is on so many machines to keep him alive and so many medications right now they decided to turn his room into an OR to do this procedure.  Everyone is capped and gloved and all the surfaces are covered and made sterile.

I retreated to the apartment to wait. I just needed to get away from people. There is just no privacy for me to process my thoughts.  Even when I sleep there are often sometimes several people in the room. I had a decent shower and called Paul. I had a good cry while letting him know that this has been the first time I am legitimately concerned that Ethan may not pull out of this.  I hate to think like that but he is very very sick. Paul also is having these thoughts. How much can this kid take?

The longer these tubes are in him, his breathing tube, catheters, urinary catheter etc, there is just an elevated chance for infection. With no immune system to tackle it, it is so terrifying. I know the team is doing everything possible to minimize this.

I don’t even know where I should focus my thoughts. There are stupid worries I have that aren’t even something I should focus on. Each worry is like a speck of snow inside my brains and my brain is a snow globe. I feel like someone just shook the hell out of that snow globe too.

Paul and I had a good talk about just allowing things to happen the way they are supposed to and how we just have to submit and have faith in that. But that is so hard for a planner like myself.  

Lack of control of anything right now is trying in itself. I can feel myself hovering over Ethan because they put socks on his feet and I know he wouldn’t like that.  Stupid things that really Ethan has no idea if he has socks on so why is it bothering me?

I had a proper shower at the apartment.  It was free of gnarly hair extensions, spit wads in the sink, and other human filth that is so hard to deal with sharing a space with strangers. I am appalled at what others find appropriate bathroom etiquette. It’s gross and stressful.

I am still waiting for the call that it is ok to return. Each minute feels like an hour.