2/6 10:00 pm

Wow! Overnight Ethan came off the nasal cannula and is breathing room air and maintaining his oxygen level ALL ON HIS OWN.  Day by day, I have been able to see more of his face and less of the tubes and tape and medical things that littered it.

Ethan’s intestines are working pretty well but he does feel nauseous after eating, drinking or getting medications.

I left our window shade open as we slept last night and this morning Ethan pointed out how beautiful the sunrise was. I was happy to share my standard line that I have said for years to my kids regarding sunrises and sunsets. In my most sincere voice I say “wow! That is really beautiful.........it’s almost as beautiful as your mom.” I have enjoyed brainwashing the kids to say this. Someday they are just going to think it and laugh.

Ethan experimented with food today. He had some banana dipped in vanilla yogurt, rice, green bean (that was good but he had to spit it out because it was hard to chew), cucumber 🥒, orange juice, and he convinced me to let him drink out of a straw.  

Drinking out of a straw takes a bit of skill. He had to retrain his facial and mouth muscles how to do this again. He was able to drink a few sips at a time.  We got some cranberry juice for lunch and he was beyond excited. He keeps talking about smoothies and how he can’t wait to start drinking them again.

He was able to stand for a moment and his core is getting stronger. He sat in the wheel chair for 3 hours today. He got his hair washed, listened to some music and I read more of the blog to him so he can learn what he has gone through.

He also enjoyed looking out the window at the endless landscape of tall buildings that stretch as far as the eye can see. People busily walking around on the streets, 9 floors down. The sun was out and he really found it quite pretty to look at.

Ethan did marching in place, neck exercises, breathing, arms a real head to toe work out. He initiated it on his own. He was pumping “iron” which was small weights we made out of sterile saline. He even was fiddling with his camera despite his heavy tremor.

After 3 hours he was ready to lay down. He took an extra long nap from all his hard work.

As Ethan was napping I caught up on some emails. Then we got the most wonderful news. We were being moved.  Everyone was excited about the room we were being moved to. The reason we are being moved is even more exciting. There are two rooms on the floor that can accommodate the dialysis machine that is intermittent. Right now Ethan is on round the clock, 24/7, blood in and out of his body continuously, dialysis. He is tethered to Janice. This new room will allow him to have dialysis four times a week for a few hours at a time. The rest of the time he can focus on walking and being mobile as well as having a change in scenery. I can’t believe a week ago this kid had his breathing tube in.

So everyone kept saying “have you seen your new room?” I in fact, had not. The room is at the very end of the same floor we are on. It is a dead end, into that room. There was no reason for me to walk down to it and peek in.

I excitedly packed up all of our things. To me, this will be freedom for Ethan. Freedom to get him out of bed and start learning and building strength so he can walk again.  His goal is to walk at graduation. Also, you better bet your ass I took my new rocking chair with me.

As I was walked down the hall with bags packed, all of the friendly faces we have had the privilege of getting to know, were smiling and congratulating me (just me because I left Ethan behind....he has too much baggage for me to move him, his pole and Janice). 

Ethan was upset about the move at first. He thought he was going to lose one of his favorite nurses that is so loving to him. She let him know she was moving with us because we were still on the floor.

When I walked into our new room, the first thing I noticed, was I had to open a thick steel door. A door that blocks noise, at the end of the hall where it isn’t quite as noisy. Wow! Way better than the glass door we had.

The room was twice the size of our last room. It was closer to the good bathroom by a lot. This will ensure I will be the first into the shower and won’t even have to body check anyone.

The most spectacular part of the room besides how spacious it was, was the view.  There is a clear view of the Hudson river and downtown. It was dark so the lights all over were twinkling bright painting a cool back drop to our cool new room.  I have been assured that this room is the best on the floor with an amazing view of the sunrise and sunset. I asked if once you have been in the ICU for 11 weeks, does it qualify you for the good room....apparently 11 weeks is the magic number.

Ethan wanted his PlayStation hooked up right away. Thankfully another nurse took pity on me looking at all the stuff I packed up only to unpack.  He helped hook it up for me. I then redecorated his new room and evaluated the 11 weeks of stuff we have accrued at the hospital to see what is going to be needed and what wasn’t when we are transferred to Blythdale.

Ethan is in heaven with his PlayStation. It was the first time he has played it since his surgery. It is hard for him with his tremors from his medications as well as his stroke hand which is weaker than the other. He found a way to play and utilize both hands. The PlayStation will be the best physical therapy yet.

We ended the evening with a little TV and “mom can you sit next to the bed?” Little does he know....I am so thankful to have him asking me that. I was talking to one of the nurses who had him when he would go into a crisis and teeter with death if you looked at him wrong. She said she thought he had a good chance of being a goner. To be fair, Ethan had  1 and a 1/2 feet in the grave those couple of days. 

Someone asked me how I got through those hard and awful days.  I told her....I found the bright side on days when there was no bright side. I found a bright side no matter how trivial it was.