Update 11/26 9:30 am

 

It’s rainy today. It’s grey out. Ethan had a restless night. I have figured out that if  I am the first one in the communal bathroom, I get it when it is clean. So I woke up when they came to do Ethan’s xray. I was so proud of myself I figured this out and that I wouldn’t have to brush my teeth with hair in the sink, or someone’s old wad of toothpaste sitting at the bottom of the sink glaring at me.

I grabbed my clothes and my shampoo and walked with a giddy up in my step. I was looking forward to drinking the coffee mix my mom made for me. It’s very comforting and delicious. I got to the bathroom. I see the door open. YES! Score!

I get in there and brush my teeth all happy with the cleanness.  I get my soaps out and get undressed (don’t be perverted about it) turn the water on.  As I am waiting to get in the shower I set my towels on the tall stand so they don’t get wet.  Wait.  Where are the towels? Are you kidding me?  I forgot my towels? I looked briefly, ever so briefly, at the towel dispenser on the wall. Nope. I just can’t do it.

I get back dressed, pack up my soaps, carry ALL my stuff back to my room in a panicked brisk walk, make eye contact with Ethan’s nurse and word vomited all over her “I forgot my towels, I gotta go quick so I don’t lose the bathroom.” Then I did one of those walks that I would do in elementary school when I wasn’t supposed to run but I wanted to so I was walking as ridiculously fast as I could. I get back down there and the door is closed. DAMN IT! 

I waited outside for the glimpse of hope that maybe they just want to wash their face? A minute goes by.  I am just standing there like a goon. I didn’t hear much going on.  I knocked.  So apparently I was in such a rush that I closed the door behind me. Oh thanks universe for this gift of a clean and warm shower.

Ethan was frustrated this morning that he was uncomfortable. He got an extra dose of pain medication. Then another. He continues to wow everyone with how awake he is on this ECMO machine. I  am hoping his lungs looked cleared on xray today. He has been on diuretics.

He is tolerating the liquid nutrition as well as the anti rejection medication. All good things.

Depending on how much sedation he has, he can sort of play a guessing game to what he wants. Today he was able to let us know that he wanted ice. His vision is a little goofy. Could be the sedation, could be the stroke or both. I included a picture of what took us 10 minutes to figure out what he wants. His mouth was dry. His brain is forming full sentences. He says them very fast and I just haven’t developed the fine art of lip reading. I told him I was sorry and I was trying my hardest and he gave me a thumbs up. That melted my heart. 

There are a lot of things for us to be thankful for this year. Staff that works on a holiday, they are away from their families to help us.  A new heart that will let Ethan thrive like never before, family, friends and strangers supporting us...wow!