Decisions

I love the floors. The mail Shute is right outside our door. 

The grand entrance.

Here are some pictures of the apartment building and a couple of learned facts to share.  The building was built in 1923 with 59 units. It stands 6 stories tall and proud in the Hamilton Heights neighborhood.

Hamilton Heights is a neighborhood in the northern part of Manhattan. It is the northernmost part of the West Harlem area.  

Many actors, artists, teachers, and other professionals now reside in Hamilton Heights.

Hamilton Heights is within the Sugar Hill district which got its name in the 1920s when the neighborhood became a popular place for wealthy African Americans that lived during the Harlem Renaissance.  It housed many prominent African Americans and was featured in movies, songs and even produced the Sugar Hill Gang rap group, which was the first rap group to place on the top 40’s chart.

So I included some pictures of our cute building that we live in, but enough with the history/geography lesson. We all know I excel at other things besides history and geography.....back to Ethan.

On Friday before leaving the hospital, we were proposed with a decision to make.  During rounds in the morning, the cardiologist mentioned that because of Ethan’s Shone Syndrome (his congenital heart defect) along with this separate newer heart issue, it qualifies him to potentially be elevated to a status of a 1A pediatric listing.

“so....what’s the catch?” I asked

He explained that in order for Ethan to be listed at a 1A status, Ethan would have to be admitted. This means admitted, and not released until after his big heart swap-aroonie.

Right now with a status of 1 B we are looking at what could be a several months wait. We get to stay in the apartment.  Ethan keeps his freedom and mobility. Well....freedom to move around the apartment. COVID has really limited us.  Thank goodness for Instacart and Uber eats/grub hub.

If he chooses a status of 1A, he has to stay in the hospital with a reduced wait time which could be several weeks but is less than several months. It will essentially move him to the front of the line-ish.

This doesn’t mean he will be first in line though.  They way UNOS distributes organs is by a database.  They take the donor information, size, weight, height, blood type and plug that information into a database.  The database then will look for a match using geography (Ethan’s hospital will only accept hearts that are 509 miles away or less).  This database will use all that information to generate its list. THEN they use the status to offer the heart to the most in need first.  If there is no one listed at a status 1A or 1B, they offer it to the kid with status 2.

Ethan’s doctors said they are very particular in the hearts they will accept.  They wouldn’t  accept a heart from an overdose death for him.

We asked if Ethan could take the weekend and mull over his options.  He hates the hospital. I didn’t want to make this very important decision for him, so I told to list out the pro’s and cons of each choice.

Let me be clear. I would immediately pick status 1A for him.  He will be 18 in less than 3 months. So much of this he can not control, so let’s give him control of what he can. He’s a smart and thoughtful kid. If he complains about his choice, he can’t be mad at me because HE made the choice.

His instructions were to make a choice he could live with, and either way, I would support his decision. I told him he was in the drivers seat and he needed to take control of the wheel.

After flipping and flopping around his decision, and reasoning behind it, he has chosen to become admitted to the hospital until.... 

I support this decision and it meant we have to negotiate some ground rules with the medical staff to make his stay more pleasant. Here are some of the things negotiated:

He has to give up his back pack in exchange for the IV pole back.  They said it’s a must.

He will get to have a portable EKG box so he can be mobile.  He will be able to walk around and leave the 6th floor if he wants to (with a mask of course).

He will NOT be subjected to every 4 hour temp checks in the middle of the night. They have promised to leave him alone unless it is medically necessary. This was a selfish request because I was getting woken up too. We all know I get cranky when I am tired.

He will have a private bathroom with a shower.

We have scheduled an appointment to get yet another covid test done prior to admission for tomorrow. Ugh! 

We are looking for a target admission date of Wednesday or Thursday. They have to give us a private room because it is too risky in a shared room for Ethan.  

As much as he is dreading going back, I am proud of him for what he has chosen. We will keep you posted on when he gets his 1A status. Then we wait.....