9/23/26

​I had a doctor’s appointment this morning, was able to make it home in time to pack Ethan up to get to the hospital by 12:30. 

He had his biopsy today. We met with his NP before hand. She was excited to share that they want to put him in another research study that will help gather more information about his heart which can help him and others.

The Transplant office just got approved as a testing facility on last Friday. He is the first patient they will submit.

The test Molecular Microscope Diagnostic System.

It uses genetics to create a “profile” within a database. They can use the profiles from other people around the world to compare his profile to. It is supposed to help with difficult cases and supplement the diagnostic precision. It helps pick up on potentially missed rejection cases.

It sounded like a good tool to collect more information to learn from. Information is power.

We laughed when she said they use it for “difficult cases”. Ethan was the first person they thought of to use this test on. Ethan’s cardiologist is the Director of the Heart Failure and Transplantation Program. NYC communicated well and pulled in the head guy to take his case because he just doesn’t follow the rules.

I didn’t take the day off because I can work during the down times. I was also to put in longer days earlier in the week to make up for the time I have been tied up. I am so thankful for the flexibility of my job just for this reason. I can also still do Mom things, or be utilized by family and friends when needed.

It was a slow moving afternoon. We were moved over to the cath lab area. Ethan was by far the youngest patient. Probably by 50 years. They called him back and prepared him for the procedure.

The man next to Ethan was suspected of having a stroke while Ethan was waiting to be taken back. The nurses were scrambling to assess the patient and I kept wanting to tell them to see if the patient could smile. I minded my own business.

He was slurring his words and was giving incoherent answers. I hope he is ok.

Ethan hadn’t eaten anything since dinner yesterday so you can imagine what a chipper mood he was in.  He was giving short, non-helpful and vague answers that required follow up questions.  He said he felt shaky due to lack of eating. 

He finally went back around 3:15 pm. “It will take 45-60 minutes” they said “or less because Dr. XYZ is quick.”

The doctor came out with an apologetic look on her face around 4:55pm. “I am so sorry.” She started….ugggg what went wrong.

She started to explain that Ethan was fine but she had difficulty maneuvering the vascular access instruments to gain access to the heart due to Ethan’s scar tissue. 

“He is going to be sore.” She said. “He should hold ice on his neck.”

Ethan shared that the doctor went through 4 sheaths that covered the wire they were trying to feed into his neck to his heart because his neck has scar tissue and is muscular. Ouch!

The doctor was so appreciative that Ethan is so easy going. She raved he was a great patient.

Ethan said that there was a nurse in with him that had never seen someone go through a heart biopsy without anesthesia before. He was feeling like Superman…as he should. He says it is uncomfortable but worth not having to lay down for 2 hours afterward. Priorities.

I didn’t love taking him into the hospital with active cases of measles last week. That is a bit un-nerving.

When we were walking to the car, Ethan said “hopefully this isn’t rejection.” 

I paused a moment and it hit me. Either way the test turns out, he loses. If it is rejection, he will then have to initiate treatment. Who knows how it will affect his body. If it isn’t rejection, he has to go for a kidney biopsy to look for rejection of his kidney, there with a good possibility of needing treatment.

Best case scenario….neither organ is in rejection and he once again is an oddity. The worry and stress will still be circulating around us for the next few weeks. Ahhhhhhh…..transplant life…..not for sissy’s.

On our ride home, we encountered several unaware drivers….the slow guy in the left lane on the expressway. The slow lady  in the left lane on the expressway and of course, the person turning left from the right  side of the lane….that we could have gotten around but they chose not to be a courteous driver. All inconveniences….but in the grand scheme of things, not a big deal.

Ethan says his neck is sore and typically is sore for a few days but never complains or brings it up. What a trooper.

Sarah came over tonight. I was glad she came. It was a nice way to end the day, with laughing.

Today felt like it was 48 hours long. We made it through though.