❤️12/8 7:00 am

 Ethan was very agitated yesterday evening proving that he did not care for their reduced sedation protocol. He was confused and I think I repeated that he couldn’t sit up 500 times. “Are you trying to sit up?” He nodded yes. “You can’t sit up remember, you have too many tubes and you need to lay flat so you can heal.” I was like a broken record. He kept trying to pull himself up. He was grabbing at his tubes, I secured his hands even tighter. I kept asking can he “have something more?”

He had people scrambling on the floor. His nurse, his doctor and others trying to adjust his dose of morphine, dexdemetomadine, Ativan, versed, methadone, and then adding dilaudid. Once they added dilaudid, they had to go up on the dose because Ethan, the Incredible Hulk, needed to get up and do some stuff.

The thing with opioids is that you can build up a tolerance. Seems he is doing that. So they will have to deal with that as they remove some drugs.

It was about 2 hours of trial and error with lots of frustration. 2 hours repeating the same phrase, watching him try to get up. Holding his hands down so he didn’t pull anything out. It was exhausting. 

The night went ok.  His nurse noticed some blood in his line that feeds the wire into his lungs to measure his lung pressures. The line seems ok but they may need to replace that today because that blood sitting there could cause an infection. Once his medications were regulated (elephant tranquilizer not the horse tranquilizer) he rested well.

They decreased the workload of ECMO overnight and Ethan’s heart had to do the majority of the work. He is able to maintain his blood pressure and oxygen saturation.

The cooling machine helped with his fever and he is down at the normal range.

We will see where today leads us.