2/1 7:00 pm

You would think with a breathing tube out that Ethan and I could communicate like hens gossiping in the farms yard. Because he hasn’t moved his jaw and mouth muscles in so long, he can’t talk well. His mouth hasn’t moved to form an “o” sound or any sound really.  He needs to build up the muscles to do so.

He wanted to eat. We discussed how his stomach wasn’t used to eating and he needs an evaluation from the speech and swallow team to make sure he can eat and drink safely. I also told him we would like to start with maybe a popsicle. He liked that idea.  He wanted a popsicle right then. 

All last night I encouraged him to say the alphabet and just say a bunch of words so that he can build up the muscles. Towards the end of the evening his voice was getting louder and he was easier to understand.

His voice was getting a little stronger but it was hard to hear him over the constant hiss of his nose air-hat. He still had little volume.

Around midnight I woke up to him knocking on the side and of the bed.  I heard it through my earplugs and head phones playing a babbling brook.  I went to see what was going on.

“What’s up?” I asked

“I’m restless” he said. The nurse overheard him and told him he was due for his next dose. She then went to go get it.

“I just wanted company.” He then reached out for a hug. If he wants company at midnight, that’s what he is going to get.

We talked about things that have happened over the last 10 weeks. We have a new president. There was an uproar at the capitol. His sister passed her AP Physics exam with an 89. We discussed what he was going to eat when he got his tube out. Popsicles and ice water. 

He was feeling hungry. His poor body is experiencing so much change. As we waited for his medications, his tremors became severe. Severe enough he couldn’t hold the blanket on. At one point I thought he was having a seizure but realized quickly he was cold and shaking severely. Ugh! Poor kid.

The shaking could be because he is so thin and is cold. He also is on medications that can cause withdrawl tremors as the medications are being weaned.  He also is so debilitated that any real movement requires so much effort from his muscles it is just pure weakness. Roll all that into the mix, when this kid shakes, you could mix a gallon of paint on him.

This morning I woke up and walked to his bed.

“Hi.” I said

“Hi” he said. I smiled because it was just so wonderful to hear.

“I want a damn popsicle.” He said.  I laughed out loud and told him that as long as the speech and swallow team said it was ok he would get a popsicle, even if I had to walk through the blizzard outside to get it.

One of the doctors was nice enough to let me know that usually the speech and swallow team does not allow patients to eat or drink anything until they have graduated to a certain type of nasal cannula. Sometimes it is better to ask for forgiveness than permission. I was able to get ahold of some ice and some apple juice and give him a little taste of cold apple juice on the end of a sponge. He loved it. But he still wanted the “damn popsicle”.  Ha! He is not asking for much.

He decided he was going to prove he was ready when they came. He has been working on clearing his throat, swallowing and strengthening his voice. The tube coming out allowed him to find his determination again and is exactly what he needed.

PT/OT came first thing. They are like a traveling comedy show. Ethan’s car buddy and fun and inspiring OT. She’s great!

Ethan was ready to sit in a chair. The last few days he hasn’t worked as hard on his PT/OT because he was feeling down. Today he was pumped. He wanted them there early. He also decided to put pants on today. Big step.

PT/OT had a wheel chair ready. They souped it up to accommodate his boney butt. Ethan is now down to 97# as of this morning. He is skinny but has a lot of fight. His cardiologist joked this morning that pizza and burgers will help. 

After much coordination, Ethan was sitting in a chair. His nurse ran down the hall and grabbed the doctors to come and look.  They all came and were peeking in from the hall.

Ethan got to face the grande window which I had opened all the way so we could watch the blizzard. The snow was blowing sideways past our window and blanketing the ground. He thought it was great. 

PT had to skip out but OT stayed and worked on marching his legs, visual orientation, he has been made aware that he is ignoring things on the left side of his body due to the stroke. 

Ethan’s nurse, OT and myself posed the idea of a spa day to Ethan while he was sitting. He thought that would be fine. He got a lovely shampoo and head massage with real shampoo. I trimmed his mustache, beard and eye brows. He got a lip exfoliation with my hand made sugar scrub. We combed his hair and styled it. Did I mention he was in the whee chair sitting for  an hour and a half? Wow!!!!!

We are going to work on the smiling muscles. This is the biggest smile he can manage.

Ethan’s speech and swallow evaluation went ok. They want to wait for a few days for  him to eat ice chips and popsicles. They felt he needed to practice more swallowing first to avoid aspiration.

What was weird, was he didn’t have any trouble swallowing the ice chips that the nurses and doctor told him he could have small amounts of. They made sure he could do a number of things before sneaking him a little bit of ice chips. They stayed right with him while he ate them.

This afternoon Ethan took a short nap.  I tidied up the room. I was able to sit for a moment before the next person came in the room.

He also got a breathing game that he has to play the exercise his lungs every couple of hours.

Since the loss of one of the kids on the floor the other day, Ethan’s progress seems to be helping the staff cope. So many of Ethan’s previous nurses, doctors and RT’s have come to see him extubated. Many of them say “it’s nice to see some great progress after the tough weekend.” I really think the staff has grieved and celebrated with Ethan and I along the way.

Ethan wants to hear about what has happened to him. He has had me start reading my blog to him. He wanted to start at the beginning. I told him he will never believe it all. I also told him he will not even believe what a fighter he is and has been.