💪🏻1/27 7:30 pm

Ethan has been a bit sleepy today. Probably because of all the PT/OT he did throughout the night. At rounds today it was discussed that we would continue weans and we are down another pump!  One of his sedations is done. Woo hoo!!!!!

Tomorrow Ethan is having a procedure done to relocate his dialysis access. It will require going down to a different floor and be sedated. They are moving it from his groin and relocating it to his chest. They are doing it to gain him mobility as well as it has less of a risk for infection on his chest.

He had to have a stupid covid test today to make sure he is negative. Really?

At the procedure tomorrow, he will have the second pacing wire that he didn’t savagely rip out of his heart, removed in a safer way.

Today we had to wake Ethan up when PT/OT came. He was so tired. He kept yawning. He had been breathing with minimal support for 6 hours prior to his therapy. It was coordinated and he had lots of support. 

He sat up and then worked on standing up. We had it timed so that when he stood up we loudly played the rocky theme song. The timing was awesome. He then sat back down on the bed. He sat for several minutes. He decided he wanted to lay down.  His OT was like “nope” she pushed him to stand up again. He did it. He stood up and was cheered on.  He was sat back down and then laid down. He was tired. His OT had a chat with him about how much harder he had to work today than yesterday.  How he did PT at the beginning of his breathing challenge and today it was 6 hours in. His muscles were tired today and he pushed through it anyway.  She then showed him exercises to keep working on with his hands.

Once she left, he wrote on the board...”I needed that.”  He was feeling defeated that he was so tired and needed his accomplishments reframed. Sometimes, we just need our accomplishments reframed. We don’t gives ourselves enough credit. I am guilty of this as well.

Ethan has been actually smiling a little bit here and there. One of the nurses is pretty funny and was cracking him up, with the breathing tube in.

Ethan is like a celebrity. He has people stopping by to say hello and to check on his progress. It is so heart warming.

Ethan continues kicking ass. He did his spontaneous breathing challenge for 10 hours. He held strong the entire time. No oxygen dips. No blood pressure dips. No heart rate dips!

Ethan did feel nauseous this evening. He got an extra dose of medication to help. The doctors thought it may have been withdrawl so they are offering supportive care for that. He then fell fast asleep.

I am hoping he keeps up this great work! He is exhausted!