2/22/23

Our day started out in the area that Ethan gets his biopsy done. We get in there and they start doing routine vitals. His oxygen level was good. His weight is steady. Then they moved to Ethan’s blood pressure. 

Nurse “is his blood pressure normally high?”

Me: “No. How high is it?” He hasn’t had high blood pressure since after his heart transplant when all of the poop hit the fan.

Nurse: “158/98”

Me: ……..”He’s normally spot on…..” my brain started spinning….what else could cause it to be high? We haven’t had any real changes. In animals, sometimes it can be high if the wrong size cuff is used.

“Is the cuff too small?” I asked. Why is it high? What is wrong?

The nurse agreed to try the next size up blood pressure cuff.  Blood pressure came back within the normal range. Phew! I joked with Ethan that his guns have gotten way to big for their cuffs.

He had his biopsy. I reached out to our Butt Nurse. She normally didn’t work on Wednesdays but she was there. I met her in the family lounge and we visited for a while. I got the call that Ethan was done. Butt Nurse decided she wanted to surprise Ethan. So she was going to go down with me to see him. 

Just then….the door to the bathroom in the family lounge opened and the person inside entered the room like Kramer from Seinfeld. I glanced up from all the noise. Who did I see? PT CAR GUY!!!!!!

We chatted briefly and he decided to join us to say Hello to Ethan. I think Ethan LOVED it. He ended up giving Butt Nurse the biggest hug! She loved it. Ethan and PT Car Guy chatted cars for a bit. 

We then said our goodbyes and headed over to Cardiology for our appointment, echo and EKG. We waited and WAITED…..then we finally got the ekg done….and then placed in the room for the echo which is never quick. They got all the way to the view with the neck. The most painful view. The lady was telling Ethan to not breathe….for little minutes at a time and was kind of getting pissy with him.

Finally she went and consulted with the doctor on the view. While she stepped out, Ethan’s nephrologist came in and did her portion of the visit. She was pleased at his progress and he is doing great from her stand point. She did want him to give a urine sample. She went off to get the supplies for that collection.

The echo lady came back in….she needed more views of the neck. Ugh! After about 10 painful minutes she left again. The nephrologist came back and gave Ethan supplies. She told us where to drop it off and bid us farewell.

The echo lady had to come back in and she had a friend. The friend gave the echo lady a quick tutorial. They did more neck shots and started asking questions about Ethan’s coatctation repair from when he was a baby.  Hmmmm…..this isn’t good. What do they see?

They don’t normally ask about that. I didn’t want to ask any questions because Ethan was mad as fire and was threatening to skip his exam with the cardiologist saying he has wasted enough time there and he was “done”. Totally understandable. They were kind of torturing him at this point.

The ladies left, and the one returned. She told us they finally got the shot they needed and told us we could go to the next room. Ethan was muttering swear words under his breath and was teetering with the idea of just leaving. Come on kid we had such a good morning.  Then, another 9 Tower nurse popped in and said Hi! 

She talked him down and he happily shared what he was doing with his car. These people continue being angels. Ethan gave her a big hug! I was so thankful for her.

Ethan was able to get through the visit with the cardiologist. We saw the cardiologist that came to let us know they found the perfect heart for him in No ember 2020, Nicole’s heart.

The Doctor told us that Nicole’s heart is safe and sound in Ethan’s chest. He has provided a safe and thriving environment for Nicole’s heart to continue living. They both need each other at this point. 

The doctor also let us know the reason for the repeat echo views of the neck is because they saw a clot. Are you kidding me???? Upon his further review and the different angles and repeat shots, they determined it was not a clot. Yay!

He said that Ethan’s numbers were normal. Yay! The numbers looked great and they will let us know if he can finally stop taking his lung blood pressure medication.

We finally got back to the hotel to grab Avery and our van to leave around 1:30. Now…onto the 6 hour drive home. The weather was not overly cooperative. Cars were spinning off the road due to it being so slippery. It took forever to get home because we had to drive so carefully.

As we drove farther north in New York, you couldn’t see the lines on the roads. Avery drove a solid 3 hours. She did great. I took over. I couldn’t see the lines in the road. The plows had not been out on the thruway AT ALL! My headlights suck so I was driving with my high beams on, on the expressway. I was so glad when we pulled into the driveway. It was almost 8:30 pm…what a long day!!!!

Ethan’s EKG!