3/23

Ethan woke up rested and ready to kick some ass. Ass is what he sure did kick today. He went to class. He ate breakfast like a champ. PT/OT came for their last time together today. They had the best session ever with Ethan. 

Watching Ethan interact with them was so fun. They brought out this game that was mesh and folded up. When it was unfolded it became a game where Ethan was to toss the ball into to this enclosure and try to get the ball into one of the holes. It was sort of like skee ball in that some holes were larger then others. By coincidence it just happened to be a planet theme.

I felt like I was having a maturity test and failed. Not just a slight fail, but a tumbling over a cliff and hitting every rock on the way down, fail. “Ethan....” I said smiling “ let me see if I can throw the ball into Uranus”. Ethan just shook his head as I was just laughing at my own jokes. “Uranus is so big, how did you miss it?” They just kept bursting out of my mouth and did I ever snicker. We were all laughing.

Ethan also was kicking the ball around in the sun. He was trying to make PT car guy run all over to chase  the ball. Then they all started sort of trying to do a polish dance in the courtyard. Ethan had fun and really pushed himself. He even did some bending and squatting.

After being outside, he wanted to restock his snack box at the gift shop. He walked down and waited while I updated my stupid badge and then we walked all around the gift shop for about 20 minutes. He walked a lot today. His ankles have become swollen in typical kidney failure fashion.

Things are getting closer to departure. I was able to set up dialysis appointments in New Jersey. I was able to establish a dialysis connection in Spencerport for when we arrive home. We are moving right along. We also got the news we will be sharing a room with another transplant kid around the same age. This should be interesting. I am already starting to panic about the bathroom/shower situation. It was either share a room or delay our departure. Share a room it is.

Ethan has been thinking and dreaming while he was bed bound, during dialysis and just whenever he is doing stuff. He has had a dream for some time to purchase, rebuild and race a 240 Nissan and convert it into a drift car. He has had this idea for quite some time. He also said he is going to give his new heart an exciting life.

He has decided to add a “Merch” (merchandise) shop to his YouTube channel. He has spent countless hours finding the right platform and designing logos to add to shirts, coffee mugs, phone cases and a wide variety of other available items to help expand his channel and save for his next conquest. 

He plans to take all of the footage that has been shot of his journey to a (heart) new engine and upload his edited, filmed and produced story at some point on YouTube. Today he was able to finally upload a few designs to Tee Public. For the next 2 days there will be discounts available on any purchases on the designs he has created. 

Link to Ethan’s store

He will also have links on his Instagram, Facebook and YouTube. 

The first design below has Ethan’s actual EKG tracing of his heart on it. Here is a sneak peak:

Ethan wanted to get Chipotle. Whenever I leave the building to pick up food or go somewhere (which isn’t very often) I keep seeing the same homeless man begging for food. He has asked me a few times for food in the past. Today I packed a little bag of food with some other goodies in it, found him and gave him the bag.  I can’t imagine not knowing when I am going to get my next meal. Hopefully it brought a little brightness to his day.

We ate our dinner and while eating, some pharmacy drama began to unfold. I started getting calls from 2 different pharmacies about a medication Ethan needs. It is a medication that our insurance wouldn’t approve because the pharmacy was “out of state”. It was in New Jersey. Apparently this medication has an availability issue in New York but a pharmacy was found in New Jersey. I needed to contact my insurance and request approval. Of course this all happened after 6 pm and the insurance company closes at 4 pm. I inquired if I could pay out of pocket for the prescription to get the ball rolling. The pharmacist told me it was $3000 for a 30 day supply.  After I scraped my jaw off the floor, I politely declined purchasing it out of pocket.

I enlisted help from the hospital and they were able to sort it out. Ethan was pissed because it interrupted dinner. He kept apologizing for me having to deal with it. What is the fun of everything running smoothly?

Ethan went up to see his friends on 9 tower again today. This was after he kicked the ball and played games with Uranus (see what I did there?).  He walked up there with little help. He is a direct reflection of their work and dedication to him. For all the kids that have a sad ending, Ethan is one of their success stories.

Tomorrow will be busy. Echo, dialysis, tying up loose ends. Then we will be set free and on to the next step.