❤️ 1/12/2022

Round two: Heart Biopsy today

We arrived at the hospital and checked in to get Ethan’s bloodwork. I arranged ahead of time for nephrology and cardiology to put their lab orders in all for today so Ethan wouldn’t need to get bloodwork again tomorrow for our nephrology appointment.

I asked the check in lady if I could review the labs to make sure all the orders were put in. The nephrology orders were missing. We left the check in area, went up to the 11 th floor, nephrology and asked for the orders to be put in. This extra step cost us some time so now we were running late. As we were back checking in to get our papers from the lab, one of Ethan’s 9 Tower doctors walked by, stopped and came in to say hello.  Ethan didn’t remember him, but I sure do. I even told Ethan that he really liked Nintendo and had a Mario brothers ringtone on his phone.

We went to the lab. It was hotter than hell in there. I had to wait outside it was so hot. Ethan got his labs (all of them) and we went to the floor they do biopsies.

As we were checking in, I received a call asking where we were. “We are checking in now.” I told her.

We went right back, no waiting. They told us that Ethan was going to have his biopsy through his neck. This will be the first time because he has always had his dialysis catheter there.

This is a good thing because usually it is through his leg. If they go through the leg, Ethan has to lay flat for 2 hours and leaves with a big obnoxious bandage. When the go through his neck, when he is done, he can leave.

Ethan was so excited they could go through his neck. His cath doctor is a really cool guy. They set up a tv so Ethan could watch everything they were doing. He explains everything to Ethan which teaches him as well as passes the time. Of course, Ethan did it without sedation. 

While Ethan was in getting his biopsy, I snuck off to a remote location to stay away from people. While I was there I ran into one of Ethan’s old nurses that asked all about him. While I was talking to her, Ethan’s old dietician came in and she was asking all about us as well. It was funny because when they saw me, each one had a look of horror and asked “why are you here? Is Ethan ok?”

I had a sandwich waiting for Ethan as soon as he was done. Ethan ate the sandwich while the discharge papers were finishing up.

We then headed up to cardiology for his exam, ekg and echo. His EKG guy is the guy that came everyday when he was in 9 Tower. He is such a nice man. He was telling us stories about the craziest thing he has seen on the subway. Those are my favorite types of stories.

There was a different echo lady than the one Ethan has had the past couple times. Normally the other lady is robotic, expressionless and it hurts when she does the echo.

Today, the echo lady was “not bad” in Ethan’s words. I am pleased with that. Ethan was in good spirits….which means I was also in good spirits.

We met with one of Ethan’s cardiologists. He’s a cool guy. We talked about how medically difficult Ethan had been. He said he remembered one night sitting outside his room trying to figure out what to do with Ethan. The next day, Ethan went on ECMO for the second time. 

He also said that Ethan’s numbers were all NORMAL. I asked if we can switch to quarterly biopsy’s. His cardiologist felt with his progress, this will be fine. I also asked about weaning one of his lung medications. We made a plan for that as well.  I told him I didn’t want to do it now, I wanted to wait until closer to the next biopsy. That way if Ethan struggles, we will get the lung pressure numbers before he has a real problem. The doctor thought this was a great idea.

As we were leaving we got into the elevator and ran into yet another nurse Ethan had. She was so excited to see him. He doesn’t remember her at all, so I was telling him about the days when she worked with him. She was always next to us and would come in to boost or help with Ethan. Two days she was his nurse. It was right after his second cardiac arrest. He was on the verge of another cardiac arrest and this nurse said we couldn’t even look at him that is how fragile he was. 

We got back to the apartment and Ethan worked on his school work. Tomorrow is meeting with the surgeon and nephrologist. Then we get a break for a few days.