Update 11/26 2:50 pm

Well rounds this morning were a shit show. What a mess. Of course they would have them when I was on a zoom call with my family.  At least I got to see everyone even if it was briefly. I went out to rounds and they started going over everything.  Ethan has one job and it is to be still. He is not to pull on anything.  He is not to move around. I also have to watch him because he is horrible at doing his one job.  I look over during rounds and his knees are bending and he is pulling on tubes.  Keep in mind that a couple of these tubes, if pulled, he would bleed out very quickly. NO BUENO! 

I had to step away from rounds because I saw movement. I ran in his room and he had disconnected one of his chest tubes.  It was at a part outside of the body, down about 18 inches from his chest.  It was making this suction noise.  I start squawking at him like a damn rabid crow. I quickly reattach it.  

When I let his nurse know she said " that is not good, that will allow air in a sterile chest cavity."  Yeah....I KNOW. Don't think for a second I am not imagining the bacteria having an orgy filled field day as we speak. Multiplying by the billions while we continue to kill off his immune system so it wont reject his heart OR a nasty bacterial infection. I am pretty aware of the ramifications. I know she didn't mean it like that.  I am so glad I kept my thoughts to myself. I really like her and Ethan does too.  Tense moments harbor our worst reactions.

I wasn't able to listen in on rounds, so I got the cliff note version from his nurse. The team discussed that tomorrow evening they are going to take him back to surgery and try to remove ECMO. He has shown significant improvements. The doctors still aren't totally convinced his heart is ready.  The back up plan is to either implant a mini- ECMO in him that will allow him to be a little bit more movable, this is called an RVAD - right ventricle assist device, to support the right side of his heart. If he gets the RVAD, he will have to have it removed in a couple weeks which means back to surgery. They may or may not close his chest tomorrow depending on how he appears to be doing.

To start and prepare for him for that surgery tomorrow, they are supporting his heart with some medications to get it in the best shape possible.  Best case scenario, he is well enough to come off ECMO and get his chest closed up. 

He has done well on the nutritional supplement through his feeding tube. 

We were trying to communicate as best as we can but I am frustrating him so much. I  just keep telling him I am so sorry I am so bad at reading lips. I asked him for his patience with me. He has developed a hand motion that is sort of like a brushing away motion when he wants me to go away.  It makes me chuckle. He even rolled his eyes at me today, something he normally would never do, but he is just so frustrated. I then asked him "did you just roll your eyes at me?" and he said "yes".  Then he gave me a smile. I laughed at him.

Ethan then became increasingly agitated. He is frustrated with being tied to a bed with a tube in his mouth.  He is sick of not being able to move on his own. He seems to be more "with it" and listening in on conversations to see if he can figure out what is going on. But he is in and out of sedation so he is only hearing bits and pieces. He is easily confused. We had another go around with him wanting his phone.  He tried writing the pass code and it was not legible. Sorry kid, not time yet.

He gained momentum and started panicking. He started to kick his legs with the strength of 1000 men and was pulling at his tubes.  He was saying he couldn't breath despite the nurse and my efforts to calm him down. "Breathe through your tube Ethan." He was in a full panic mode and fight for his last breath, even though he could breath.  Delirium. I was told this could happen.  I had my body thrown over his legs and one arm holding him down on my side while his nurse was trying to talk to him on the other side.  An additional nurse came in when she heard the struggle. His nurse ran to get extra sedation. The second nurse and I just held his thrashing body down trying to calmly tell him it was ok. Holding him down while he thinks he is going to suffocate, was not an experience I would like to relive. I am sure he thought I was assisting in his death. Can you imagine you think you are suffocating to death and your mom is making it worse? I am hoping he doesn't remember any of it and doesn't develop some psychological twisted hate for me. Ugh! 

His nurse came back with sedation and gave it.  It wasn't until his eyes were rolled back in his head, white and vacant, and his trashing had stopped, that we let go. He has been sleeping for a couple hours now.  I asked for a drip of my own of that medication.  It seems to work well. As he gains speed for more work under the hood, he needs to just rest and heal. They want him more sedated so I think the plan is to keep him on a drip of that as well. 

I was thinking this morning, it has been one week since Ethan was listed at a status of 1A. WOW! We have made so much progress.  Time has gone by quickly but also stands still at the same time. The next few days will be tough but I am hoping that I will have my kid back soon.