❤️ 12/13 8:30 pm

 Ethan has been mostly sleeping but continues to see the scary thing at the end of his bed.  His legs look so thin. I helped the nurse turn him and his hip bones are more prominent. He started to get a skin tear on his back from laying so long. He is turned every couple ours but he is moving enough to revert into his comfy position which isn’t the best for him.

I know kids can be a pain in the ass the majority of the time but stop and appreciate them when you are busy with life. Take a minute to hear what they are saying or to understand why they are doing something in particular. Listen for their laugh and play it over and over in your head. Appreciate their annoying behaviors, because I miss all of those things right about now. 

I know I will see them again but still it’s been over 3 weeks. Even most adults talk to their parents more frequently.

Ethan did something today that seemed really grouchy. He was slamming his arm on the bed while simultaneously mouthing something that I couldn’t lip read (with a tube in). He was getting so frustrated that I couldn’t understand what he was saying.

Sometimes Paul and I call Ethan “Archie Bunker” because Archie was a bit crotchety just like a 17 year old boy. I saw today’s grouchy-ness and thought, I have to video tape this so Paul can see him sort of acting like himself. But Ethan stopped before I could get my phone.

I didn’t make any mom points today when Ethan was trying to mouth me something. He used a big long sentence that was impossible to figure out. He then closed his eyes (likely out of frustration) so I tip toed away and sat down.  What is hallucination?  What is delirium? What is Ethan breaking through with a coherent thought? What was he telling me?

The next thing I knew he scooted himself uber fast so that his hand was near his breathing tube. He looked like a crumpled up piece of paper hunched over.  I thought he was after his breathing tube. Nope!  He had an itch on his head. 

Tomorrow should be filled with lots of visits from lots of people. X-ray, ecg, echo, neuro, respiratory therapy, PT and OT just to name a few. He was slowly but successfully weaning a little on some of the narcotics. We still have a few days to go with that. Slow but still moving forward.