1/26 8:05 pm

Today was a really good day. Each day Ethan gets a little stronger.  Today another vent setting came down. Ethan also had another spontaneous breathing trial. He did it for 7 hours. Which means for 7 hours he was doing the work, not the vent.

Ophthalmology came and made sure his eyes were ok. They are. They do want to use steroids in his eyes but won’t until we get close to discharge. This is because his immune system is already compromised and puts him at risk for an eye infection.

Ethan’s eyes also started doing a new thing where he is looking straight ahead, but one eye (not always the same eye) wanders off to the side. The ophthalmology team thinks that this is likely a side effect of sedation.

Ethan did the most wonderful thing today. When he sat up on the edge of the bed, we had a drum roll and he  actually stood up. He stood for a couple of minutes. He then sat back down on the bed for a few minutes. His PT car buddy asked him if he was going to stand again and he shook his head yes. He stood for a couple minutes the second time as well.

His balance is off and he leans to the left. He can correct it with visual cues.  He stood, in all of his glory, as he was cheered on by all the people in the room.  He then gave fist bumps and thumbs up to everyone.

He did all this while not relying on the vent. Wow!

All these ways he is kicking ass, makes all those tough days worth it. Today he was smiling. Real smiles as he was talking to the nurses. He does have a steady fan club. 

He will finish some of his weans by Thursday. We can then start tackling other weans. However, they are thinking that his breathing tube will likely come out next week. I am feeling nervous about this. I want him to succeed.  I want to make sure his lung health is as optimal as possible. I am worried that, because he can’t shake this bacteria in his lungs, that every 3-5 days after finishing antibiotics will be a repeat of the past couple times and this infection tears its ugly head. I have communicated this with several doctors, but I’m not feeling like they believe me.  

One of the infectious disease doctors talked to me about resistance and how if he becomes resistant with long term use that it would put him at risk for antibiotic resistance blah blah blah....I am just frustrated a bit and it will be discussed again at rounds tomorrow....because I just can’t let it go. He has had two bouts with pneumonia so far. Let’s not make it three. Let’s try something different. Let’s treat longer. I am just venting. I feel like a broken record.

Ethan had a long day and finally took his first nap around 7pm. This is a big deal. He is frustrated with how things are going and is learning details about his past couple of months a little bit day by day.

My day was full of bright spots. My most favorite one is seeing Ethan smile.