3/24

I had to laugh this morning. Ophthalmology came by to examine Ethan. There was a sign on the door that said “DO NOT DISTURB ETHAN IS IN CLASS.” She opened the door, came in and said “I saw your sign. Is now a good time to do an ophthalmology exam on Ethan?” She stated that she saw the sign. I politely recited the second part of the sign she already saw. “Ethan is in class and we can’t disrupt him.”  “Oh......ok....I guess I will come back later.”  I told her “that seems like a good plan.” I just don’t understand????? These are situations that drive me a little nuts. I have to do my box breathing afterwards. I took the time to communicate our needs. They were just ignored.

Ethan did have some visitors that came to say good bye. They didn’t seem to have trouble with the sign. Ethan had tears in his eyes. Loose plans were made in the future for when we come back into town to go to appointments. It makes it less of goodbye and more of a see you soon situation.

Ethan had his PT after class as well as an echo before dialysis started. During dialysis, Ethan turned in his beads of courage log to his nurse that we lovingly deemed his “butt nurse”. Who wouldn’t want that title?She is on the wound care team and was helping to care for Ethan’s bed sore way back when.

I went upstairs with “butt nurse” and she went through and prepared his beads. While I was upstairs I was able to see many people that cared for Ethan. I saw the doctor that spent 12 hours sitting outside his room because he was so critical. Her eyes lit up talking about how much better he is doing and how everyone wasn’t sure if he was going to “make it”. Heck I wasn’t even sure at some points. I had to put all my trust in that things would work out however they were meant to. I had to trust that somehow, whatever his fate may be, was what I was to accept. I like the outcome.

It made me go back to, this kid steps in shit and comes out smelling like a rose over and over again. I had to trust in that. He is oozing rose right now. WOW!

I spent the morning on and off the phone with the insurance company, pharmacy and Children’s specialized to help coordinate things. Most of this has been done our rock star nursing and social work team members. Thank goodness for them. 

I was able to pack the majority of things up today. Tomorrow will be a busy day. 

Ethan’s echo results came back “looking great!”. That is such great news because up until this point in Ethan’s life he has NEVER had a good echo. Wow!

As I told him over and over again while he was in a coma....we are BOTH walking out of this hospital. I am not leaving without you by my side. My most sacred promise ever.

I am proud that this medical team included me and let me be an active part of it. We all came together and we’re able to work through this no doubt most stressful time ever. I leave this hospital an emotionally stronger person. 

I decided to prank the hospital. I hid small Sasquatch cutouts all over the hospital. I thought it would be fun for people to discover and wonder what the hell is a Sasquatch doing in here. Or......I wonder what the story is with these? This is how I entertain myself.

Ethan had his brains scraped again for his covid test. They need to make sure he is negative for rehab. Gotta love the brain scrape.

We said more goodbyes, exchanged hugs and Instagram info. We are ready to move onto the next step. Ethan did mention he was a bit nervous with all the upcoming change. We will adapt and kick ass.