1/25 7:40 pm

Paul and I decided we are going to give up the apartment. It is three times the cost of our mortgage and I rarely utilize it. We will be asking people to refrain from sending anything to that address from here on out. We appreciate all the gifts we have received, thoughtful letters and goody packages. 

I have started really getting nervous about having to move all of our things by myself. When we came to the hospital, Ethan and I both were loaded up with our belongings. He was able to help. Now it falls on my shoulders and I am not sure how I am going to pull off carrying our stuff as well as a sick kid on our transfer to the inpatient rehabilitation center.

I met with a social worker that shared we would be transferred in several weeks to an inpatient rehabilitation center by ambulance. Ethan and I will be able to stay together (because there would be no other option in my book) while he gets his strength back and works on doing everyday tasks.

We have a number of goals to meet prior to transferring so it will be a while. 

This morning Ethan woke up chomping at the bit to see his PT car buddy. He is now able to write his questions on a white board.  He then wrote that he wanted to walk today. Keep in mind he is still on dialysis, a number of drips as well as his breathing tube. The logistics of his request are not achievable. But the drive behind it is unmatched.

He also wrote on his board: Gotta kick ass! What he doesn’t realize is he is already doing that. Way to go kid!!!!

Keep in mind he is writing these messages on pain killers and sedatives. Not bad I think.

Ethan sat for 15 minutes today. He also received the most precious gift from his PT buddy.  The supra model for him to put together to work on his fine motor skills when it is appropriate.

Then, it was decided he was well enough foe another breathing challenge. They had Ethan doing the work to exercise his lungs. His lungs need to regain their strength and be able to do this on their own.  

Because Ethan had a bit of an issue with low blood pressure on Saturday and was a bit lethargic yesterday, the team is hesitant to remove his breathing tube by the end of the week. They are still slowly weaning his sedation and pain killers.

His nurse did a dressing change on his arterial line because it was bleeding around the tube. This is likely because it has been in since November. When the dressing on it was removed, some blood trickled out around it and dropped down his arm.  He had just gotten one of his heavier doses of medications. He was watching what they were doing. He was very calm watching his nurse redress it.  As she finished, Ethan became quite upset.

“What’s wrong?” I asked, he looked at me with wide, panicked eyes and began to silent shout at me. I had no idea what he was trying to say because he was talking so fast. I had him write it down.

“Want it reattached.” He wrote. He was visibly freaking out. “You want what reattached?”

He then wrote “reattach my arm.”  After a series of questions it was determined that he saw all the blood and thought his arm had fallen off. It just fell right off with no traumatic event associated with it. He thought his nurse just used tape to put it back on. His nurse excused herself because she was dying. We then went through a number of movements that just couldn’t happen with severed tendons to convince him his arm was intact and that he just had a splint on his arm.

We then discussed what a busy day he has had and how many drugs he was taking and how he hasn’t rested at all.  We talked about how sometimes I get emotional when I am tired and maybe he could take a nap and feel better. He agreed he felt emotional and decided to take a nap. So he continued his breathing challenge successfully during a nap!

Ethan also discovered the art of a good foot massage. He has been asking for them all day long. I asked him if he is going to give me foot massages too and he did say yes.

Ethan did a successful breathing challenge for almost 6 hours.  Woo hoo!

I then asked his nurse where she learned to reattach arms with tape and is that the new technique they teach in nursing school?

Ethan’s weight when he entered the hospital was #127. When he had all the fluid in his body his highest weight was #150.  Since he is on dialysis he is now #110. That’s quite a yo-yo over the past two months.