9/27 Update - PICU Day 9

Short and sweet update as not much happened today. Ethan was weaned off of the precedex and started on a clonapine patch and ativan to help alleviate any withdrawal symptoms.

Lungs sound good, but he still has to cough some nasty coughs. We were able to suction some of the secretions and jazz that he was coughing up which was good. He does have some labored breathing, but is on room air with only blow-by oxygen on standby if needed. He has only needed the blow-by a few times for some isolated desat moments.

He has held on to a low-grade fever and an elevated heart rate. Both could be attributed to withdrawal or the lingering infection- maybe both. We don't have a sure way of knowing.

So, withdrawals...the most obvious withdrawal symptom he has are the shakes. When he goes to lift his arm up, he shakes like a person with Parkinson's. It's super sad to see. He also has like a blank stare when he's looking at you, but he's trying so hard to maintain eye contact. The other withdrawal symptom is sweating. Not profusely or anything, but just a nice salty dew across his forehead.

This morning, when the surgical resident came to visit we talked about the casts. She was not under the impression we would be going home with the casts on and I was, but over the course of the conversation, we wondered if there were any splints that could be made that would be removable for showers and sleep, as well as lighter in weight. Well, a wonderful OT came by and made him some splints and they are awesome! Best thing is that they will last so we can use them in the future for things to keep his arms secure (ie. sleep studies).

He is getting used to his new mouth. I think he thinks that his tongue feels funny and Dr. Runyan thinks it's also likely. He looks really good, especially compared to a week ago!

Now that the breathing tube is out, I told Scott that Cora could come visit. I posted a video on FB with their reunion. It's really precious if you haven't seen it. Cora didn't want to leave because she missed us and she wanted to stay here with me.

Just a little while ago, our nurse was wondering if we could be moved to the floor tonight, but after some discussion, they've decided to keep us here one more night and move in the morning. We will have to stay on the floor for 3 or 4 more days while Ethan finishes out his Zosyn antibiotic for the pneumonia.

Lord willing, this is the last update from Room 625 in the PICU.