2/7 10:25 pm

We slept GREAT in our new quiet room. Xray came in at 4 am. Ethan’s xray was fantastic. Ethan had a bug up his butt to set up the play station steering wheel so he could play Gran Turismo. “Can you set up the steering wheel?” “Ethan, I love you, but I have to go back to bed.”

At 6:30 am I woke up again. Ethan was waving to me. “Can you set up the steering wheel?” He asked. “Sure” He also had picked out a smoothie he wanted to try the night before, and wanted me to order it on grub hub. I plugged in the coffee machine and walked around the room in a daze. What am I doing I asked myself.  Oh yeah, finding the steering wheel. I wandered around the room looking doe the steering wheel. Clearly I need my coffee. I go to get my coffee as I should have been brewed. My cup was empty.  I had a wave of confusion and disappointment wash over me. What went wrong? It was plugged in....crap I forgot to turn it on. 

“Good Morning, I got you coffee!” I heard our favorite nurse say. It was as if the clouds parted and  she floated in with impeccable timing. “Wow!” I needed this so much! Thank you.”

There are big, fat snowflakes drifting down slowly from the clouds. They have been floating down all morning. It is so pretty. The visibility is squat, but pretty flakes for sure.

We got Ethan’s set up all ready for him to play and went through the rigamarole of getting him into a chair.

Because we moved rooms, they skipped Ethan for breakfast. That was ok, I ordered his smoothie. He drank a bit and we put it away. I went down to the cafe and got him some fruit salad. He loved it. 

They skipped him for lunch too. His nurse was on it. He came back with some pasta, bread and cranberry juice. His face lit up with the cranberry juice. I let him feed himself. Good PT.

We turned on the pre-game for the Puppy bowl.  Then the Puppy Bowl started. So cute. Made me miss my little furry devils. Ethan wished Phineas was with him to lay on his bed. Phineas would love it here. So many kids to sniff and keep safe. 

We were talking to a nurse recently who we found out watched Ethan’s transplant. She saw his old heart which she described as stiff and rigid as well as thickened and his beautiful new heart which was smooth and perfect. 

Many of Ethan’s nurses that have been off for a few days have come in to see him in his new room. They come in and say hello to him and then tell him about what he was doing when they took care of him.  

Story after story is about how he was struggling to live. Their faces are painted with true joy for his progress as many doubted he would get to this point. “Miracle kid” is a familiar term. If it had not been for each and everyone of these wonderful people, this kid would not be here with us today. It was a group effort for sure. I am so thankful for this army that fought for him.

We started going through Ethan’s medical history and figuring out Ethan’s beads of courage. Beads of courage are a form of narrative that help make visible your medical story of strength and courage. Each bead received is for a different test, treatment or diagnostic that he has gone through during this journey. Ethan has pegged everything on the list except the newborn/infant milestones.

He is excited to see his journey in beads and even said “wow! That’s going to be a lot of beads.”  His nurse said they had to order more beads to because it will deplete them giving him the mother load of beads he has earned.

Well he got the mother load of beads. Each bead symbolizing every single damn hardship he has faced over the past 11 weeks. I also got my own special beads for being there with him.

He has been doing physical therapy by stringing the beads. He got two lightening bolts for being zapped twice. He got some special glass and handmade beads. There were so many beads. Ethan’s nurse worked her ass off to tally all the numbers for the proper bead count. He so much appreciates them.

I am in the process of finally restoring Ethan’s phone. Cross your fingers it works or he will be devastated. Lesson learned. When you go in for surgery, tell someone your phone password.

Lately my bright spot has been looking at Ethan and my heart bursting with happiness that he is getting better. Finally!