10/25/23

 We were up bright and early to get to the hospital by 7:00 am. We are a well oiled machine. Uber was scheduled last night. We know the drill.

We got to the hospital and we were delightfully surprised with one of Ethan’s old 9Tower nurses as his nurse today. He was the nurse that had a calm and soothing voice. He was kind and gentle when he was Ethan’s nurse in 9 Tower. He was a gift today.

They came in and got Ethan all ready for his procedure. His doctor came in and let him know the drill. They took Ethan and I ran over to the donor center for my blood draw. That went well and I found my little tucked away nook that I escape to.

There is a bathroom there, a one person bathroom that some guy went in, he blessed me with a symphony of bowel distress noises. While he was in there another guy showed up and was asking me if I was in line. NO WAY! I wouldn’t use that bathroom after whatever massacre was going on in there.

I politely said “no” and this man happily waited for the bathroom to become available. The first man walked out quickly and the second man walked in. He walked into the plumage of fecal bacteria cloud. He used the bathroom and came right out, without washing his hands. I get that it was likely barely survivable in there but Ugh! In a place where there are sick and frail children, this man felt it was acceptable to just walk around with his soiled hands touching everything for the rest of the day. Wiping his filthy crotch funk all over. GROSS!

Unfortunately, I am sure this happens all the time and we really never know how much groin bacteria we come into contact with on a daily basis. Barf!

Picture yourself in a quiet room. Picture a nice relaxing area where you are calm, your heart rate has slowed and you have a slow and relaxed breathing. Now picture the exact opposite. This chaotic environment is littered with screaming and screeching babies that sounded like their limbs were being torn off slowly one by one. The monitors were alarming with loud DING….DING…DING…over and over and over again. For HOURS. That is what Ethan and I listened to as they controlled his bleeding and monitored him after his procedure. My blood pressure was high just listening to it.

Those damn alarms. They are so jarring. My stomach tightens and I feel nauseous when I hear them. PTSD at it’s finest. The alarms have ruined me for repetitive noises. I just can’t handle it anymore. I go on high alert and be on immediately annoyed.

We saw the nephrologist as Ethan recovered and things looked good there. I got a call from my donor office and they said my labs looked great and I was released from Donor follow up.

We went to the EKG room. That is usually quick.We then went up to the dreaded echo. Ethan remained in good spirits the entire day. This is where he usually runs out of patience.

He was blessed with an amazing echo lady. She was quick and not painful at all for him. There were no repeat images. He maintained his cool. I took some video of Ethan’s (Nicole’s) heart. I hemmed and hawed about whether Nicole’s family would want to see this or not. I ultimately decided that I would. I told them to let me know if it was upsetting to see these updates.  They seemed to be receptive of the video I sent of Nicole’s heart beating away. Ethan and Nicole are quite the team. She is his engine and keeps him going.

We were then off to the next appointment with the cardiologist. Ethan’s numbers looked great today. Pressures were normal. Measurements were normal. The doctor we saw today was the first doctor that we originally evaluated Ethan’s case.

He was describing Ethan’s disaster of a hospital stay to his fellow. We had not met her before. He admitted that the reason for Ethan’s disaster of a hospital stay was because his pulmonary hypertension was not re-evaluated right before his heart transplant. They went off of numbers taken about 5 months prior to transplant and they had gotten significantly worse. It wasn’t new news to us. But had they repeated that test, Ethan likely wouldn’t have been eligible for transplant. Life had a funny way of working out. Although Ethan took the brunt of that bad decision, he also gained another chance at life.

We discussed Ethan being able to transfer to the adult center. We need a few people to sign off on this for it to be so-able. We need the heart and kidney team and the psychologist. So far Ethan passed their test today of naming off his meds, the dose and what they are for. We will hear back in a week or so what the next steps are.

As we were leaving, we ran into one of Ethan’s other nurse’s from 9-Tower. She was another favorite. We chatted with her for a bit. We then started our trek back to Rochester.

Traffic was wretched as we tried to leave NJ. Picture 20 miles per hour for a good 15-20 miles in bumper to bumper traffic. It wasn’t even rush hour.

We drove the 6 long hours home. My butt is so sore from sitting. My sciatic is screaming. We arrived home and unpacked the van. I gave ethan a big hug and told him I was proud of him today! We had our best visit yet today.