6/21/23

 I realized this morning that all my crazy bug bites are actually poison ivy. So that’s great. No wonder I want to scratch my skin off until I am bleeding. Happy Wednesday. At least it explains why my eye is a little swollen.

We got an early start to the hospital this morning to tackle the George Washington Bridge. Hurry up and wait. I can’t imagine having to do this day in and day out. How do my fellow humans not lose their mind in this traffic? Also how do they maneuver with their cars so close to one another. Merging is nerve racking. The cars are separated by a paper thin space.

The windows were open and it smelled like tires and gasoline. There was a constant hum of engines with the thuds of tires hitting something they shouldn’t. Then there is always that person in the distance that despite everyone doing their best to deal with this awful traffic, they lay on the horn. There have been ZERO studies published that say HORN HONKING is an effective tool to arrive at your destination faster. Dumbass!

We got to our room and admitted. They were taking Ethan’s vitals and they said “does he always have high blood pressure?” Oh here we go…..I asked her to try again with a larger cuff and he came back normal! Yay! We don’t need to add that to the list of Ethan’s medical issues! This seems to happen each time and we somewhat expect it. Cuff size matters.

Ethan’s doctor doing the biopsy was the head of the Cath Lab. This guy must do these in his sleep because he was speedy quick. Ethan does these without any medication, or sedation etc. they grab the tissue they need and take the measurements of his lungs. We will get the results tomorrow.

We then saw nephrology. It was nice to see Ethan’s doctor. She is quite pleased with his progress. I am pleased my kidney is doing a kick ass job in his body and along with Ethan being diligent with his water intake and diet, his kidney levels are all in the normal range! Excellent!

We were then off to get the echo, the worst part of the visit. We arrived about 9:40. They told us our appointment wasn’t until noon. NOON! I paused and collected myself. Our normal scheduling lady retired and I gave the new scheduling lady explicit instructions about how this goes down for us. I was upset that I wasn’t heard. 

I quickly wrote an email to Ethan’s doctor letting her know we were there today (we were seeing a different doctor because she was on ICU duty today) and that the situation was that they scheduled us at noon for echo and 3:30 for a visit with cardiology. I asked if there was anyway that we could do a video visit as this would put us on the road likely close to 5 by the time we got back over the bridge and then home by 11:00pm -12:00 am ugh! I don’t stay up that late.

Within 5 minutes, she popped her head into the waiting room. She was marching. MARCHING! This is a woman that has complained in the past that her staff tricks her into taking the stairs because she doesn’t like exercise. They engage her into a conversation and steer her towards the stairs before she realizes what is going on. I love this about her.

She marched in, made eye contact with us, and threw us a head nod to acknowledge us. I hopped onto a work meeting out in the hall (because why would I take the day off?) and she came back. She spoke to the doctor we were seeing and let us know we absolutely would be seen sooner than 3:30 for the appointment and before noon for the echo. BEST. DOCTOR. EVER!!!!

She is the best. I told Ethan that he will NEVER get that kind of care on the adult side. She is on team Ethan all the way. She really makes him feel special and cares about his situation.

Not only was the echo started early, but the lady doing it knew her crap. She was efficient, she didn’t hurt Ethan at all and didn’t have to repeat any images. She didn’t make him hold his breath and forget to tell him he could breath. She was done in 40 minutes and usually they take about an hour. We took her name and thanked her profusely. We will be submitting a note of praise on her behalf! 

We saw the cardiology team (team of 3) today and learned that all of Ethan’s measurements look great. His lung pressures are stable even after discontinuing the medication that helped stabilize lung pressure (signifying that his lungs have healed well). Yay!

We now wait for the biopsy results for rejection as well as the levels of Ethan’s rejection medication to make sure that is accurate.

We were in the car heading back home by 12:45pm, a world record for us! The drive was uneventful, just the way I like it. Our butts hurt by the time we got home though. Way too much sitting!

I still had a few hours of work to do when I got home, which I still had time to hang out with Avery and take the dogs for a walk.

This day went incredibly well and I hope the biopsy results match. Kudos to the staff at CHONY!

They were pleased with Ethan (Nicole’s) Ekg.

They shared this diagram of Ethan’s heart and where they made the incisions to remove his heart and replace it with Nicole’s heart. It is kind of neat to get a visual.