Afternoon Update

 So I realized Ethan can communicate when they went to brush his teeth. They do a “mouth swab” and it stimulated him enough to start to choke. He then looked like he was mouthing something and I realized he was saying “I can’t breath”.  I told him he had a breathing tube and that he couldn’t talk. He then started nodding yes and no to basic questions.  

“Do you want the TV on?”

“Yes”

“Do you want The Office on?

“Yes”

“Are you in pain”

“No”

I told him that Phineas had a play date with his new cousin dog, Rubi and dad sent a picture.  I then got a thumbs up.

He watched the office for a few hours and then wanted his phone. He has a passcode. Facial recognition won’t work because of all the tubes on his face. I then tried to figure out what his passcode was. I tried a number of different methods. I wrote numbers down and told him to blink when I got to the number. That didn’t work. He tried to take the phone but his hands aren’t quite communicating great with his brain with sedation on board.

He then wrote the 6 digit passcode down.He was upset that I couldn’t figure it out. He wrote it on the pink paper.

Clearly I had trouble and he started to get frustrated. They then had to sedate him a bit more because his blood pressure was getting out of whack.

He will go back into the OR in the next few days to have ECMO removed from his heart. They will then close up his chest.  Right now it is wide open like the Grand Canyon. They have dressings over it so things stay put.