10/13/21

I scheduled our Uber into the city for 1/2 hour before our appointment time. We are literally 4-5 miles from the hospital in NJ. There was a sea of tail lights the entire way across the George Washington Bridge with 8 lanes of traffic (reminiscent of our Atlanta traffic days).

Luckily, I had a cup of coffee before we left the hotel. However, I did regret not having my coffee in the Uber. No one wants beverages in their car. They can be spilled and you have to remove your mask to drink it. So it’s an Uber no-no.

It is weird coming from our small town where mask wearing is optional in most venues. Everyone in NYC is in masks on the street. You can’t get into a restaurant without your proof of vaccination (luckily we had it this time), you can’t get up from your table without your mask.

Ethan was not looking forward to today. I mean, who would? They had Ethan “prepare his nether region” with the clippers. That will probably be itchy in a day or two.

They will access his artery and vein in his leg, feed up a camera to take pictures of his arteries when the dye  is injected, they will take a little piece of his heart to look at under the microscope for signs of cellular rejection. His coronary artery will be assessed for narrowing.

His procedure was supposed to take “45 minutes” and an hour and a half later…..I was called in. Everything went well, despite the longer time it took. The Doctor came in and said Ethan’s coronary artery’s looked “beautiful”. Also, we will know more in a couple days about his rejection status. 

Because Ethan was set for dialysis when we got back to the hotel, he avoided an IV and fluids. Literally the only pokes he got were from the camera/biopsy lines fed into his leg vessels.  He did not get any sedation.

As soon as he was done, he was back on his phone and was able to eat.

One of Ethan’s nurses is from Hilton, NY and went to Hilton High School when I was there. She, of course, was younger and graduated 3 years after I did. Such a small world. Since I am 25, it would make her 22.😂

We listened as our nurse tried to explain to the lady next to us that because she was a half hour late, her daughter’s procedure would be delayed because they took another patient in her time slot.

This woman was pissed and just couldn’t understand that she wouldn’t be taken in right away. She wanted to leave and not wait in the patient waiting area and the nurse politely explained that if she wasn’t here when the teams came around, it would delay her procedure even more.

This woman argued with almost every member of the team that she shouldn’t have to wait. This woman arriving late affected not only her kids procedure, it pushed the medical team behind, which likely threw their lunch schedules off, all the nurses lunch schedules off, as well as it likely lengthened the medical teams day.

This woman even went as far as asking if they could just remove the child that was in their current procedure so that her kid could start theirs. The medical team promptly let her know that her request was not an option. It was a painful conversation to listen too. While things happen, delays happen, and people can be late for circumstances out of their control, don’t give these medical professionals crap because you can’t be seen because you were late. That just isn’t cool. I was annoyed for the staff that had to explain it multiple times to  this woman. Unbelievable!

Ethan laid flat for 4 hours. He did great until the third hour. By the third hour, his back was hurting and he was frustrated with the echo lady. His heart echos are quite uncomfortable. The echo lady had to repeat and re-repeat multiple shots. Ethan started to get upset. I had some of the nurses come in to get him more comfortable with pillows and blankets, without making his groin bleed.

He was able to hold it together and visited with his cardiology team. They were pleased and will be in contact with our results in a few days.

We then snuck up to 9Tower. We saw lots of familiar faces. Ethan had a smile from ear to ear. He was talking about his car, what he’s been up to and I caught up with everyone’s lives. It was very uplifting. I want them to take care of me on 9 Tower too, instead of shipping me to the adult hospital. 

We came back to the hotel and I went to the front desk to pick up the  bags of dialysate that were shipped for Ethan’s dialysis. When I checked yesterday, it had not arrived. When I checked today….it had not arrived.

Swirling panic took over as I was quickly forming plan B. We are going to have to go to a local dialysis center and hopefully his center can send over the prescription. I called our dialysis nurse. He picked up and likely sensed my panic. I asked him to call the company and run a tracer on the boxes. He took on the challenge. 

The man behind the counter asked the manager if the boxes arrived. She said no. I showed them about how big they were and said there should be three of them. I remained pleasant, because if they weren’t delivered, it wasn’t their fault.

It was a long several minutes and then my dialysis nurse called back. The boxes were received by an employee and I verified that person worked for the hotel. She did. So now we just had to find the boxes. After a couple minutes….they were found. Talk about heart flutters. I was so panicked I thought I developed a panic arrhythmia.

We ordered Chinese for dinner. Ethan picked. He could have whatever he wanted after getting through today. He had great satisfaction eating his dinner.

We had a quiet evening and will be heading home in the morning. What a long couple of days. However, our bright side is we LOVED seeing all the familiar faces.