8/25/21

Our heart catheter/biopsy appointment time was moved from 9 am to 7 am. Ethan got some numbing cream from where they make the incision.  Last time Ethan went in, the doctor didn’t really talk to him and let him know what he was going to do next. We communicated that this was important to Ethan. The doctor we spoke with had never worked with Ethan before and he asked Ethan if he wanted to watch.

They brought in another TV screen so Ethan could watch what was going on as they fed the catheter up the vein in his leg. Ethan got to watch the clamps chomping on a little piece of tissue of his heart. He thought it was pretty cool. “That was the best cath I have ever had.” He told me.

He had to lay flat for 2 hours. In those two hours, his cardiologist and cardiology NP came by to have a visit/exam, he had a full echo, ekg, meeting with the nutritionist to sign off on transplant and met with the heart cath doctor. 

We walked back to the hotel, packed up and left. Ethan’s incision was a bit sore. As we drove it remained sore. Partially through the trip Ethan started vomiting. He vomited in a bag thankfully but then was feeling rough for the rest of the trip. I sat in the back with him for moral support. Paul looked like our Uber driver.

We tried doing a dialysis treatment while in NYC but I forgot a cartridge, which is crucial for treatment, so we were unable to it. I forgave myself because there are so many things I am juggling right now. Normally I would beat myself up over this, but in this game of dodgeball, I can’t dwell because I have to be ready for the next hit.

We quickly formed a new plan which is what we do these days. The new plan was to do it as soon as we got home. It’s kind of freeing to live like this. There isn’t enough time to second guess any decision. You make the decision with confidence and keep moving.

This will lead to a very late evening with the promise of a long workday on Thursday. Ugh! My lunch break (one of many zooms coming up) will be spent on zoom trying to get the sign off for transplant. Tomorrow’s department is getting the blessing of the pulmonary hypertension team. We need to be certain his lungs are managed well enough to not cause a problem.

After the long ride home, we immediately started dialysis hoping to finish before 11. I am so glad this is a temporary lifestyle. I will have to work extra hard to have a sunny personality tomorrow. 

As I was preparing the dialysis machine, Paul comes running in side yelling for me. He was panicked. “I just got attacked by bees!” He yelled out. I came flying down the stairs immediately pissed off that something was attacking my family.  “How many stings?” I asked.

Luckily there were only two….but these were yellow jackets (yellow Jack-holes) so they freakin hurt. I picked out the stinger imbedded in his skin. I gave him some Benedryl, Aleve and ice to hold on the stings. I then prepared for battle. Avery helped by getting him some water to swallow the pills.

I put long sleeves, long pants and went out with two cans of bee spray. I was sweating all over the place with this darn heat. The bees had their nest in the ground. I told them if they minded their business that this wouldn’t have to happen.  I sprayed the hole and killed a bunch of them but need to go out after dark and use the power and duster to get the dust in the hole. I can’t have the kids or dogs getting stung too. 

Dialysis felt like a thousand hours long. It was a long day and to sit for more hours was a bit torturous. But we did it. Ethan fell asleep half way through. He was so tired. Tomorrow is his first day of college.