2/18 9:45 pm

I was visited by a friend from 9 Tower than brought me a coffee this morning. How freaking nice! To think someone went through this effort to make my day a little better is mind blowing.

Ethan was beyond excited when I got back from the pervert shower. I could see it on his face before I even got inside the room. 

“You missed it Mom! I wish you were here!” He had two visitors from 9Tower stop by to say hello. It may have been 5 minutes out of their day but it was worth GOLD to this kid. He had a coy smile on his face and I know it made his day! It’s the little things like this that can be big things to someone else.

Ethan ate like a champ this morning. He took his pills by mouth to reduce his fluid intake. We are recording every single calorie with hopes to reduce his feeds enough to allow him to not have feeds during meal hours.

I got myself in trouble trying to shut Janice up.  I bumped up against her while I was doing Ethan’s physical therapy and set her off. She started making her super annoying noises. I knew I had caused it so I just reset the machine, like I have for the past month or so. Our new nurse kindly asked me not to touch it. Crap! 

Psych came and woke Ethan up from a nap. As you can imagine Ethan was groggy. The doctor asked Ethan how Ethan felt his mood was. Ethan was quiet at first. He then said, rather sleepily, “I am in the mood.....(there was a pause).....to kick some ass.” I started laughing. He then looked up and smiled. 

Lunch came along. Ethan was visited by speech and swallow so they could “watch him eat” which isn’t weird at all. She stands and watches and then comments on the way he is chewing or swallowing. The comments are favorable and he is doing well.  It is just a little odd.

We had a meeting today with our Make a Wish coordinator. She got to meet Ethan and listen to his wish. Ethan was very excited about this. 

Then PT/OT came in. Janice “accidentally broke”, on purpose, so that Ethan could be mobile. Don’t tell the renal team that. It’s a top secret mission that Ethan greatly benefits from. Everyone is in on the secret except the renal team.

OT/PT brought a fun little game of “who are the people without their masks on?” They had pictures of several staff members we had worked with over the past few months, but without masks.  There were a few that I knew right away. There were others that were tough and I kept having to cover up the bottom of their faces. Then one or two that I brain farted on and couldn’t remember their name. One of the girls in there I absolutely love and am still convinced it is not really a picture of her. Such an odd concept that this is the reality we live in.

Ethan was ready to kick some ass. He was assisted up and proceeded to walk around the unit, step by step with some assistance. He looked straighter and seemed to have a little bit better balance than his previous walks. It is hard for him because of the pain and pressure of being on skin, joints and muscles that haven’t moved like that in so long. He did exactly as he intended and kicked some ass. 

He slept the afternoon away because of all the energy he expended. Janice was hooked back up.  I enjoyed another visitor, my friend that offers me therapy even though she says I offer her therapy.  She came up on her break. So nice.

Ethan had a brief period of withdrawl and I held the barf bucket as he was wretching his guts out. They made another wean on his medications and his body is revolting.

Ethan was ultimately started on a new medication today. It was the one for his blood pressure. His blood pressure has dropped even lower and was 60’s/30’s. It was approved by the pulmonary team to not intensify the pulmonary hypertension. In addition to starting a low dose, they weaned a medication that was known to cause the low blood pressure, hence the withdrawl symptoms.

His withdrawl caused him to not want to eat dinner. He had a few sips of  ensure and that was it. He had his bath and was back to bed.

Ethan has an appointment for Monday to get another biopsy done. Hopefully they can also give us insight on the clot in his neck. Oh yeah...and yet another covid test. His frontal lobe is going to be gone by the time he leaves here.

He will have to go on cumoden soon. It will not be long term just about 5 - 7 weeks or so until the clot absorbs. During those weeks, Ethan will be in a bubble.

My bright spot today was seeing Ethan walk like a champ!