❤️2/2 7:25 pm

Last night went ok.  Ethan wasn’t able to sleep well. He has the CPAP nose prongs to help maintain his vent settings. Ethan was suffering a bit from withdrawl and had waves of nausea, yawning and tremors. Although I was told the tremors could be from the heart medications and this too shall pass.

He had me busy asking for ice chips. I would walk down the hall, get the ice chips and walk all the way back and then he wouldn’t want them. I would sit them on the counter just long enough for them to melt and then we would start the process all over. Three months ago this would have annoyed me but now, I am just happy to have Ethan here to be able to get up to do these things for.

He constantly is knocking on the bed to get my attention.  He wants the fan on or off. He needs the blankets on or off.  He has questions he wants to ask. He wants the bed up and down. He is nauseous and needs help with a barf catcher. If he does vomit he doesn’t understand there isn’t a whole lot in his stomach as it is being drained for him.

He was more confused last night and into this morning. He was asking questions that we had already talked about. 

He was flipping out about his bath last night. This kid is all about routine. He has gotten used to his bath around 9:00. He started asking when his bath was. His poor nurse was flying around collecting all of his medications and logging them, then Janice would alarm, then one of the pumps would go off. 

Ethan was getting frustrated because he wanted his bath. I am thinking he is trying to grab onto any sense or normalcy he can. Routine comforts him. The heated towels he loves. I may be spoiling him but I don’t care. I hate being cold.

I was trying to help to get things ready and to warm Ethan’s towels for him with the heating pad. Ethan just took his boxers off and was ready. This is so not typical for this kid.  I started bathing him. His nurse was apologizing to me and I felt terrible for him. I was totally rushing him.

I slept for short periods of time. Not the best nights sleep but I will manage. Coffee will be my life line today.

Ethan went down to a simple nose cannula today for another “sprint session” this is to prepare he for weaning off the CPAP. The sprint session ended up being a marathon because he kept up the good work for 7 1/2 hours. Wow!  He was working hard.

Ethan’s voice is very weak and hoarse. He doesn’t complain much, but his throat is sore.  “You had a tube in your throat for 10 weeks” (10 weeks and 1 day but who is counting?)

Ethan is bored. He really enjoyed sitting in the chair and watching the snow. He wanted to do it today but OT wasn’t here because of the weather. Maybe tomorrow?

It was suggested he get an ear, nose and throat evaluation. They came rather quickly and stuck a camera up his nose and fed it down to his vocal cords. They are working normally, just irritated. Yeah!!!! No damage. This will allow them to be less cautious about restricting him from eating. He so excited to eat.

Ethan and I did have a good chat about how nice and supportive everyone is and how kindness has touched our lives during his medical ordeal. We agreed that we need to pay it forward. We also talked about living the hell out of every day. He said that is what he was trying to do before the surgery. We talked about how he has a big purpose and how he has already touched many lives with his fighting spirit and drive to overcome. 

He did say it is hard for him to remember what day it is because all the days are the same and he is tired of just laying in a bed. I got a whiteboard and it BIG letters for him to read from across the room, I wrote “Today is Tuesday, February 2.” He did say he was worried he would miss his birthday. I laughed and let him know that I would not let his birthday go by without telling him. I am crossing my fingers he can have Italian ice on his 18 th birthday on Thursday.

We did a few breathing exercises in addition to his breathing challenge. He played some games on the IPad using  his left and right hand. Bonus PT. He was playing games that were good hand - eye coordination. I had gotten an iPad holder (even though we don’t have an iPad) for him to use while we were borrowing the hospitals iPad.

Even though it seemed for Ethan he had a boring day without progress, he has done things that have improved from yesterday. He is able to remove his boxers by himself. He is able to sort of pull the blanket up and over himself.  He is smiling a little better. He is able to push the button on his fan to turn it on. These are all small wins in a big way.

Ethan was feeling down about his day. He didn’t feel like participating in the FaceTime call with Avery and Paul, even though I know it would have cheered him up. He was feeling like he didn’t improve enough and was feeling like he just wasted today. He was bummed. Tomorrow is a new day. He is allowed to be frustrated.

I wish he knew how much he crushed today. I get it. He wants to go home and when he asks me when he is going home, I say “we are going to be here for several more weeks.”  I haven’t even brought up the rehab portion yet. I may let someone else break that to him. No need to rush into it.

My bright spot today was talking with Ethan about ways to pay it forward to society. He seems on board as well for helping out our local community. I feel like we will be able to make a difference.