1/14 6:20 pm

Ethan has had a busy day!  This morning I did all of Ethan’s stretches along with the new ones I learned yesterday. It takes about 30 minutes. Ethan’s nurse also happens to be on the wound management team and is determined to heal this bed sore. We are doing frequent turns. I love that she lets me help. I know these nurses are so busy and I can be a useful set of hands. Plus, it makes me feel like I worked out.

Ethan’s nurse and I discussed how Ethan’s shoulder looked “weird”. It looked very sore and stiff and it was kind of hunched up toward his chin. Imagine how your body would feel if you hadn’t been moving for the past 8 weeks.

I brought this up in rounds and they have ordered a consult with the rehab team.  They will likely come tomorrow.  This will help look at the big picture for healing and hopefully if we intervene now, we can get the ball rolling and ward off some of the frustration if we are moving and stretching while he is “unconscious”. I use the word unconscious because he occasionally opens his eyes. He occasionally moves his hands. He can move the muscles on his face into a grimace other than that he is emotionless. I was shocked this morning when he pointed at the picture of a car. That was the most interaction he has had in a while.

I am hoping that if I can at least help to stretch and move things for him, if he does have nerve pain or muscle soreness, we can work through it and set him up for success when he is able to talk and process thoughts.

I have also been trying to do some of the muscle building exercises to preserve what he has. He looks like he has melted into a shell of himself with all the muscle wasting that has occurred.

One of Ethan’s nurses stopped by today. She said she watched Ethan’s you tube channel last night with her husband. It turned into a binge watch. She had tears in her eyes and said that he really had a gift and that she just knows that he will be an inspiration to many. We then chatted about life and attitude and how Ethan will do well because he is determined. All good things to hear as a mom. I enjoyed her visit. She was a joy to talk to. Our thoughtful conversation and her presence  strongly reminded me of someone I used to work with.

Then it was time for the circus to begin. Disconnecting this pump and that pump. 2 anesthesiologists, 1-2 nurses, a respiratory therapist a large bag of emergency drugs. And me calling after them. “Take good care of my boy please!” I find that if you use your good manners people are more willing to do what you ask.  So I said “Please!”.

All of these people needed to transport one kid. 

I cleaned the room up and housekeeping came in and mopped the floor. I changed all of Ethan’s pillow cases and organized the bin where the sticky pads are. I arranged them in size with dividers so it was easier to find what they are looking for.

Today was also line change day. They change out all the pumps and reliable everything, neaten things up.  Ethan is down to ONE STAND!!!!! What?!?!? That was not a typo. She rolled in one stand. 10 pumps on one stand.

“Are you shitting me?” I asked “WOW!”

“Shut up, your going to jinx it.” She said.

The best thing is that the staff shares the excitement over being down to one stand with me. I had tears in my eyes. 

Ethan came back (cause I said please I am sure) and his cardiologists came to the room to tell me things looked better this time around. Yeah!  Not perfect but better. We will take better.  Also, we won’t find out about his biopsy for a few days.

The removed the big fat line on his neck!!!! 

It’s gone!  It was removed. This is a big deal!

He got back to the room. His nurse and I got him comfortable. I just ask what I can do to help. I so much enjoy her. 

They cut down a little bit more on his sedation which is great! He can’t get extubated until he gets rid of his drips. I don’t think that is on the horizon for the next week or so but maybe in the next 2 weeks? Fingers crossed.

I feel like today was a great day. Next up, maybe Sunday or Monday, another diuretic challenge to see if he can come off of Janice.