2/9 11:15 pm

Ethan is weighing in at 90 pounds. He started at 127. He is just a shell of himself and weak but gaining strength everyday. He wants to be strong. Breakfast came and he ate a bit of pancake, a bit of hard boiled egg a little bit of crepe.  He then asked for some fruit. Man he plowed through the fruit like he was eating for his life. He ate every piece of fruit and then asked for mandarin oranges. 

I got him decent for the day. Combed his hair, helped him brush his teeth. He wanted his phone. He had me get him some ice water and ice chips. Then all the doctors started coming around. Ethan and I slept in until 7:30 ish. Then I had to fight to have my turn in the shower (I am being dramatic). 

We did Ethan’s stretches and wrist, ankle, knee, elbow and shoulder exercises. It takes about a half hour to do them all.

Ophthalmology came, nephrology, the critical care team, preparing their plans for rounds. Rounds resulted in more slight changes and weans. We discussed weaning his IV food. When we go down on that Ethan will be in better shape to graduate to intermittent dialysis. He will have another 12 hour break Thursday or Friday and have the diuretic challenge then.

PT came. Mr. Car guy PT man brought Ethan a “Supra Parking Only” sign for what Ethan says “the garage” and I say “the barn”. I park in the garage. Truthfully we can both fit in the garage but I am not giving up my spot. Ethan loved it. It was so thoughtful of him to think of Ethan.

Ethan did some sit to stands today. He would sit and the edge of the bed, PT would lift him into the standing position and Ethan would have to hold it for 5 seconds and then sit back down. While that was being done, I changed the sheets, zero’d the bed and got all of the cushion supports organized for when Ethan goes back into bed.

In addition the sit to stands, Ethan also did some marching in a standing position. It was brought up that maybe later this week Ethan will take a few steps. He worked hard and was exhausted.

The day is speeding by. It’s lunch time but I feel like it was just breakfast. I am also ready for a nap. At some point I need to go finish packing up the apartment, but it won’t be today. Ethan was in the wheel chair for 4 1/2 hours. He napped, looked at his phone, at lunch and napped some more.  Like good napping. The kind where your mouth is open and catching flies. A nice deep glorious slumber.

Ethan was moved back into bed and tucked in. Janice makes him cold. He loves his super cozy and awesome blanket. He played the PlayStation even though his stroke hand makes it hard for him.  We talked about pushing through and using that hand even more.

Psych came by and were pleased with his progress. We also talked about how he was feeling like he had lost so much time with his surgery and how he was a bit mad about that and has now come to terms with it and accepted what has happened. He and I make a good team. 

Ethan’s girlfriend, Jesney, had wanted to go get a pedicure with Ethan. I have been giving him a pedicures and have him convinced he needs to get one professionally done. This is something we wouldn’t normally expend money on but we decided it might be fun if all 5 of us went, Paul, myself, Avery, Ethan and Jesney.  Ethan does think They may bring out a cheese grater for Paul’s feet. We were sharing a laugh over that today. Ethan is cracking jokes which is fun to listen to.

Ethan was texting and playing play station.

Ethan napped a good portion of the afternoon and are a decent amount for dinner. We talked to Avery and Paul on the portal which Ethan finally got to participate in it and they could hear him.

We had bath time. The nurses and I have a system. I provided the warmed up towels and depending on the staffing and what craziness going on, I may or may not help. I mostly make sure Ethan stays warm with heated towels, blankets and hot packs.  I feel so sorry for all the nurses that have to deal with my humor. Today I actually was helping and thought it would be in funny to moon the one nurses with OT my butt, but Ethan’s butt. Luckily I chose the right nurse as I am pretty sure I could get in trouble for it. I did announce I was going to do it ahead of time. Ethan knew I was going to do it ahead of time and consented. It was a quick, drop trousers and back up again.  Ha ha. I amuse myself sometimes.

Ethan is all tucked into bed. Another day closer to going home.