🙂12/11 2:15 pm

We are headed in the right direction with Ethan. However,  man has this been a lot of work.  This kid....he’s free to a good home.  Or any home. It’s not his fault. He has no idea what he is doing.

I urged for a psych consult which we will have this afternoon to see if we can add some medications to help with the delirium. I would also like a psych evaluation for myself. I feel like I am caught in a tunnel of repetitiveness.  Like groundhogs day but every 5 minutes instead of daily.  I am afraid to leave to use the bathroom because this kid just wants up.  Do not pass go, Do not collect $100....just up. He pulls at anything he can and all his sides have to be on his bed so he doesn’t hurl himself off the bed.

He has managed to need his two A-lines to be re-taped. I hold him down while the nurse tapes and every time the pumps or alarms go off. Then we can’t move and the whole time like 5 alarms are going off. 

I imagine a team of people sitting around a table during the design of these machines.  “What is the most annoying sound in the word?” Then they add that to a machine.  Then they fine tune the most annoying sound and it gets worse by changing pitch and volume going from a louder noise to the loudest noise. 

They give Ethan sedatives and they just don’t work. He just snow plows his way through it. Basically they need to wean down on the sedatives but can’t because Ethan is freaking out. So hopefully psych can prescribe something to help with that.

He just sort of thrashes in bed, tries to bust through his restraints over and over and over again.

He has another echo today to assess his heart failure and see if there is more improvement. Next Tuesday he goes for another biopsy to make sure there are still no signs of rejection.  He is being weaned off the breathing machine. 

Physical therapy came today and is having me start stretches on his hands and feet to prepare him Over the next couple of weeks to walk.  Physical therapy assured me that his movement on his left side is better than what she typically sees. Time will tell.

With all the recent infections with Covid, Paul and I have decided it is best if he and Avery stay home for Christmas.  We wouldn’t really be together if they came here anyways. This way is safer for Ethan and I feel good about the decision.

I think I will need a vacation after this.

He has been increased on his feeds.  He has been decreased on his breathing vent. All little steps in the right direction.