🏎1/15 7:00 pm

We had another busy day today. I am tired. I am sure Ethan is tired as well.  My RT buddy brought me a coffe and snack from Starbucks again. I have decided to pick someone everyday and share a beverage with them (non-alcoholic). I have some drinks stashed away in my fridge. I see what they are drinking the day before and then grab that and put it in my fridge. It makes everyone feel good.

Rehab stopped by and said that Ethan has a lot of muscle wasting and reconditioning from being bed bound. They are suggesting we get transferred once stable to a place close to here for inpatient rehab. He has a ways to go before than happens. I got the name of the place and will start google stalking it tonight. It is about an 30-45 minutes from here. We will stay there while Ethan gets the rehab he needs to come home and be able to do tasks by himself.  Tasks like holding silverware or turning on a faucet. Going from a laying position to a sitting position. Standing up and walking. We have a lot of work to do.

Ethan has started to be weaned off of one of his 3 pulmonary hypertension medications. It is a slow wean of micro doses over the next few days. Little baby steps.

Xray came and looked at each shoulder and clavicle  as well as his humerus. No fractures or displacements.  Sometimes I guess transplant patients can get brittle bones.

OT came and did some good stretching and exercises. Ethan can’t handle a lot right now and everything seems to hurt.  Imagine how it would feel after laying in the same position for 8 weeks.

Ethan is slightly more interactive. It is usually in the form of  him wincing or grimacing after each movement. Or him crumpling his face up with tears of agony and frustration sneaking down his beautiful face.

It’s hard to see. It sucks and makes me sad. I am dealing with it by trying to stretch him as much as possible and reassuring him it will feel better soon. Motion is lotion.  Part of me is trying to reassure my self it will be better soon. 

We had the pain management team come to assess to see what else we can do while remembering he has one kidney. They need to keep it safe.

I was able to visit with Jayne, who’s son had the transplant 3 weeks before Ethan. They have been discharged but had to come back for a complication. That was a nice break.

I think Ethan’s delirium and withdrawal are under control. They are starting to wean the drips one by one. Rehab wants him extubated but he also has to be able to support himself. They want Ethan more upright to exercise his diaphragm.he has been mostly sitting today.

My bright side of the day was that Ethan was staring at my RT buddy. I introduced Ethan to him. Ethan stared at him. My RT buddy said “hi” and Ethan waved at him. Wow! Ethan is so weak it was hard for him to wave. But he did it.