2/8 10:00 pm

 I finally was able to get Ethan’s phone situated. I did have to do a full restore and he lost almost everything. He lost any text messages he may have received in the past 11 weeks. He was super bummed. He said he has missed a lot on Instagram.

Ethan has graduated to getting an X-ray to once a week. Woo hoo! Only interrupted once every 7 days for that nonsense.  It also means he is getting better.

We also got the news that today we get to do a Dialysis hiatus. The goal is to get Ethan more mobile and motivated to get moving.  Janice will be off for 12 hours. She will then go back on tonight. 

The plan is to eventually get him to a couple hours of dialysis 4 times a week. He has the little kidney that could.....it is still making tiny bits of urine even though it doesn’t have to. Janice is doing all the work and Ethan’s lone kidney is like “hold my beer......watch this...” and still producing it one on top of it. Ethan’s renal doctors are thrilled.

Ethan had quite a morning. He started feeding himself breakfast. Shakily he decided he wanted cereal. A mom’s worst nightmare when their kids first start feeding themselves is anticipating how messy the cleanup will be. Ethan, with his withdrawl tremor, chose cereal. I was so thrilled that he is able to eat, I threw some food catchers down and hoped for the best. He really did well and hardly spilled a drop. He also had banana put in his cereal and a half cup of fruit salad.  He had some orange juice and it was his first real meal. He begged me to find a place to go shopping to find him some fresh pineapple, strawberries and blueberries. I will be double masking it this afternoon and going for a walk a few blocks down to the grocery store. I have my booklet of safe food preparation to follow.

Ethan also for PT/OT, sat in the wheel chair untethered to Janice for the first time. He was able to go for a ride down the hall all the way to our old room which is vacant still. He got the nurses congratulating him as well as the doctors. Everyone knows his name. He had to wear a mask which he hated.  We ended up looking out the window in the staff lounge with offers a beautiful and sunny view of the skyline as far as the eye can see. He also got an awesome view of the Hudson River. 

He came back to the room and we sat just the two of us. We talked about all the progress he has made.

He wanted fresh fruit in a bad way so I made my way down to a local grocery store. I can’t imagine walking to the store at home. That is the normal here. It’s so weird for me. There are far too many people. The aisles are very narrow. There are so many people. I wore two masks and was still so anxious I almost just left a few times empty handed but knew if Ethan could go through what he has, I could manage a crowded store in a pandemic. I grabbed some fresh fruit and returned so Ethan could pig out on pineapple, mango and blue berries.

His nurse came up later and asked if he was ready for a surprise. She got him up in the wheel chair again and the two of us became Ethan’s traveling shitshow while she was trying to manage his iv pole and oxygen tank (because he didn’t feel like he could breathe well with a mask on so we supplemented with oxygen via nasal cannula) and me trying to drive the wheelchair. I have no spacial awareness with the wheelchair and am constantly ramming the foot pedals into stuff. I act as if I am a drunk person driving the chair. His IV’s aren’t overly long so we were taking baby steps and still running into things. Poor Ethan.

We went on the special elevator and got to use the special “code blue” elevator key which doesn’t allow for anyone else to be on the elevator with us.  When the elevator arrived, a person was on it asking for directions. Ethan’s nurse skidaddled her right off stating that the elevator was for patients onlyWe brought a blanket for Ethan. We were able to sneak Ethan out into the courtyard. As we were walking down the ramp to the courtyard, we looked up and another one of Ethan’s awesome nurses that he loves, was eating her lunch and excitedly waving at us and Ethan. He loved it. The air was cold and crisp. I pulled the blanket up to Ethan’s neck. It was so pretty with the freshly fallen snow from yesterday. They had lights hanging down from the snow kissed branches of the trees. The branches were glowing. Ethan really enjoyed it. “I want to eat some snow” Ethan said. “NO!” Ugh! Yuck. 

As we fiddle fodded our way back upstairs we were met with excited faces wondering if Ethan liked his surprise.

We then sat in our room and watched the sun go down. It was really beautiful. It looked like a painting. The only thing that screwed it up was the dirty windows.  Could be worse. 

Ethan was not excited about the hospital food. He had a few bites and then tried some ketchup. He said it tasted funny and started wiping his tongue with a napkin. We decided to order a calzone. Well then went poorly. It was almost an hour late. As I let my frustration shower all over Paul in the very most cranky way, Ethan began getting emotional and giving me a hug telling me it was going to be ok.  Wow! That really reminded me to get my head out of my ass.  I was hungry but still..... maybe that is where Ethan gets his hangry from?

Had to contact Grubhub to get my money back. Just one more thing.

My bright spot today was seeing Ethan leave the floor he has been on for weeks and let his new heart have a taste of fresh air. He loved it. I loved it.