Update 11/25 11:30 am

Ethan’s nurse overnight gave me the ultimate compliment. He said that when Ethan was getting frustrating this morning that my voice was very soothing and it even made him feel more calm. I am going to add that to my resume. Maybe I can make my own “calm” app. And just soothe people all day long.

Ethan has been coherent more today. He even needed a little extra sedation because he was “pushing through” the morphine.  He hates his breathing tube.  He has asked for it to be removed multiple times. I don’t blame him.  He really hates the daily floor cleaning Zamboni. It is too loud.  He flipped off the zamboni when it drove past his room. I have since closed the door. He doesn’t like noise. Never has.  He was the kid who brought ear protection to the movie theatre.

He is still asking for his phone which “needs to be charged”.  He also did a good job communicating his feet were cold and he needed socks.  His nurse had to go find the biggest pair she could. His feet are much bigger than the rest of the kids.  Someone else walked in the room and said. “We NEVER see those socks”

Neurology came today and he did really well on his exam. When they all said hi to him, he waved with his left hand. I did let them know that his exam will be done on him as is. No turning off pain/sedation. He is now moving both eyes together. He can see out of both eyes. He is gaining strength in his left hand. 

They had him squeeze his left hand and right hand. He then had to pull up his right arm.  He used his strength. The neuro guy said “geez you are strong, you could beat me at an arm wrestling contest.”  Ethan smiled at him.

The neuro team asked him to wiggle his toes.  He wiggled his toes, moved his foot around and lifted his leg up. Show off.  It did make me smile. 

They seem very encouraged and will have the physical therapy and OT visit him. We are in the process of getting him a white board to communicate better. The letter board was not helpful for him.

His cardiologist came and let us know that his echo from yesterday was still showing the right side of his heart being weak. They can’t really tell what his lung pressure is like. They will do another echo today and compare them.

The plan is today to turn down the ECMO this after noon and make his heart and lungs more responsible for their normal functions to see how strong his heart has gotten.

On the echo yesterday, it was unclear if they saw another clot forming in his heart. So they will be tracking that closely as well.

Comedy Central has a South Park marathon on.  He has that on in the background. Everyone is working so hard to help Ethan improve. It is so heartwarming.