💪🏻 12/5 7:25 pm

 There is one nurse on the ICU floor that has not actually been Ethan’s nurse, but she helps his nurses all the time. She is this cute little tiny woman with a friendly demeanor.  Today she came in when it was quiet.  She said to me “you can always tell how sick a kid is by the number of pumps they have. Also by the number of doctors that show up during rounds” There was a pause.  “He has A LOT of pumps and a lot of doctors.” 

“Yes, there are a lot.” I said.

“I just want him to catch a break already.” She said.  She was touching his leg.

“Thanks, me too.  He will get there he is just taking his damn time.”

“I know he will.  You can never lose hope. I have seen amazing things on this floor. Otherwise I wouldn’t keep coming back.” She said

I appreciated her stopping by.  She didn’t have to. How nice.

Ethan is fighting to get better. I know he is. Each day has been a little better than the last. His legs have grown a bit boney. His skin is a bit pale. His eyes are bloodshot from lack of blinking as well as fluid buildup. But he is in there, probably flipping off the zamboni and nurse BM-BP (don’t forget the hyphen). He is healing up the insides and then the other stuff will fall into place.

I keep getting little bits and pieces of Ethan’s story that weren’t shared with me prior. Like his first night after transplant, they thought they were going to lose him. No one ever shared that with me. Had he been at an obscure transplant center in let’s say South Dakota,(listen I have nothing against South Dakota, I just needed an example) he likely wouldn’t have survived. Wow!  For all the crabbing I did about coming to NYC, this was the reason we were pushed in this direction.

I know Ethan has many things he would like to accomplish. We are slowly trudging through this obstacle course of healing. Patience is hard. The patient cat catches the mouse. (Of course I have an animal saying.  Would you expect anything different?)

I have been waiting all day for any sign of movement. I keep jumping up like the mom of a new born. Is he up? Is he moving? Did that toe just twitch? Did he just fart?Of course I can’t just worry he will fall out of bed.  No, that is what a logical person would think. My worry gets elevated.  I just know he is going to flop himself out of bed and hang himself on all his IV lines in the middle of the night. We go big or go home. The restraints are going on soon just to ease my own anxiety.

I am thrilled to say Ethan is down to 14 pumps. That is a step in the right direction. I am guessing it is going to be an interesting night.  Wish us luck!