The Evaluation (it’s a long entry)

 

We made it to New York City. It was a realatively easy drive until the last 15 minutes.  The last 15

minutes would make anyone want a stiff drink. Our room is on the 11 th floor.  It is small, but nice. This is the view from our room.

Ethan made traveling look cool.  We stopped in Scranton, PA and looked for our friends that work at Dunder Mifflin, but we didn’t see any.

It is so cramped here. It is just a different way of life than we are used to. Very busy, loud and full of smells.  Some good, some not so good.

While Ethan got on his computer when we arrived, Paul was googling liquor stores. Ethan is nervous and cranky because of his upcoming appointments. I can’t imagine his worry.

Tomorrow will be a busy day.

10/21/20

The hotel room was the smallest hotel room ever seen.  It was about 12 ft by 12 ft. We had a small bathroom, queen bed and we brought an aerobed that didn’t really fit between the bed and the wall unless it wasn’t blown up all the way. We all slept crappy. Ethan developed some sort of whistle noise as he was breathing. It woke me up first because….well, even a gnat fart wakes me up. I cranked the fan on high to drown out as much noise as possible.

Then Paul nudged me and asked “what is that noise”.  

Me: “it’s Ethan breathing.”

Paul: “I think there is a cricket in the room.”

Me: “nope, it’s Ethan breathing.”

Paul: “how is he making that noise?”

Me:”no idea”

We arrived at the hospital. We had to check in which involved showing my license, getting a terrible picture taken of me and getting a big visitor tag.

We then checked into the lab, 19 tubes later, we went up to the next appointment, echo/EKG.  This lasted about an hour.  Our next appointment was the social worker getting a feel for our family dynamic as well as Ethan’s hobbies and way of life. This will help them understand how to support Ethan.

The nutritionist said that I “made her job easy” with the meals I have been preparing and Ethan’s healthy food choices.  We both got a thumbs up from her.  Huge compliment.

We then met with the cardio/thoracic surgeon. He was very straight forward and said that they do at least 5 open heart surgeries a day at their hospital. (Not to be confused with 5 transplants). He said that transplants are not a hard surgery in theory. It is kind of like “plug and play” surgery. He went over the complications. 

He said that when a heart becomes available it is “harvested” and filled with a solution to help preserve  the tissue from deteriorating. It is then placed in ice.  Then it is transported to the hospital.

Once it gets to the hospital, Ethan will be prepped for surgery. He will go on a by-pass machine as they remove his existing heart and replace it with the new heart. It will then warm up as Ethan blood pumps through it. As it warms up it flushes the solution through and starts pacing itself/ beating. Crazy.

If the heart is “tired” they will supplement with medications until it strengthens.  There is a chance that they will not be able to close the incision and will have to place a “bandage” over the incision for a couple days then close the incision a few days later. In this case, Ethan will be essentially unaware of his surroundings until he is completely closed.

Once the surgery is done, they expect Ethan to be in the hospital for 2-3 weeks. We will have to stay close to the hospital for frequent biopsies and heart catheterizations for the first month. They will be tweaking his medications. He will be on rejection medications for life.

Ideally they want us to be within a 3 hour or less distance from the hospital until his transplant and then for a month after being released Ethan is devastated by this. His spirit is broken.  Poor kid.  He said “my life is never going to be normal.” 

We then met with Ethan’s lead doctor and lead nurse. They explained how Ethan will be staged. There are 3 stages 1A-which are kids that are in the hospital and are the most urgent cases.  Then 1B is kids on a medication to support heart failure  but are not hospitalized and are well enough to stay home.  Then stage 2, kids that need a heart but are not sick enough to be in the hospital or on medication.

The doctors need to review all Ethan's tests to see what stage Ethan will be listed at. We will hear back by Monday.

Depending on what they decide, we will schedule accordingly.

As long as he is listed before his birthday, he will remain listed as a Pediatric patient on the list.

He will remain under the care of the pediatric transplant team until he is 21. Then he can get his care in Rochester.

He will be followed for his life and be used to compile information to help others in decades to come.

Because he was so upset, he got to pick dinner. We got take out at a BBQ joint. He also decided he wanted a fancy Icee virgin drink. That was his “ice cream”.

10/22/20

We started the day off the an artery and vein ultrasound. Ethan was fortunate enough to get the ultrasonographer that has now been named “The Ultrsound Nazi”. This woman was terrible. Ethan and I were unable to talk. She asked him to remain still...when he wasn’t moving. She ran over her ultrasound time by well over 45 minutes and we missed our child life specialties as well as I had to arrange for the financial consultation to take place in the hall outside of the ultrasound room while they were finishing up with Ethan. This was because she ran over on her time for that appointment as well.

The Ultrasound Nazi was by far the worst employee we had come across. When describing the woman to other workers, I used my name for her. They knew exactly who it was and agreed she was a wretched woman.

We were able to complete the rest of our meetings before the stress test. The stress test went well. It was with this cool guy that was sweating in Italian at the computer. Right up our alley. He cut the stress test short so that Ethan wouldn’t get zapped by his ICD (defibrillator and pacemaker).

As we drive home we have a very upset teenager that feels that he has been cheated by life. We are researching places that we can move to that will be close to the hospital and on a route we can either Uber or Lyft into the city.

Ethan is still coming to terms that his life is going to be turned upside down. He is coming to terms with that we will not be around family on the holidays. The next 3-4 months will involve he and I living elsewhere and unable to return to Rochester.

I think the hardest thing is trying to keep him remaining positive. We will all have our lives turned upside down.

Tomorrow I will be trying to figure out our living, work and life situation for the future. I got my work cut out for me. We will find out a date fairly soon, and will let you know.

The good news is, we are moving forward. One step closer to a new heart for Ethan’s “engine swap”.