8/22/21

Ethan had dialysis today. He weighed in at the most he has weighed since the beginning of the year. 110#. We are hoping he can keep this trend up. 

He is feeling anxious and crabby as we prepare another trip to NYC. We will be meeting with his surgeon, my surgeon and he will also have his heart biopsy. We will be there a couple days.  

Anxious and crabby aren’t really the words to describe his attitude. Luckily I know that he really struggles with these trips. That knowledge is so valuable. Ethan becomes belligerent and down right pissy when these trips come about. I can’t really blame him.

I have learned to not engage. We weather the storm the best we can. Is it because of all he went through? Is it because he is a teenage boy? Is it both? It’s probably both. We never know if he is going to just grunt and mumble or fly off the handle over something minuscule. It’s all part of the emotional rollercoaster we juggle. 6 hours in the car with that isn’t the most ideal.

Today the blood pressure machine was acting up. This caused Ethan to really react. When I asked him why he was acting the way he was, it came out that he was frustrated and anxious to go to NYC. He also did not like that he has to have his biopsy, lay flat for two hours, sit in a car for 6 hours and start his first day of college the very next day.

The biopsy isn’t overly terrible. Basically they inject him with lidocaine and make a small incision. They feed a small tube through his vein (near his groin) and feed it into his heart. They then take a small piece of his heart and send that to the lab to look for rejection at a microscopic level.  After they get what they need, Ethan has to lay flat for two hours. This seems to be the worst of it for him. He hates that part the most. This is crucial to making sure Ethan’s medications are appropriately dosed.

Last time we learned that Ethan does better when he knows what is coming next. We now know to communicate this with the doctor doing his procedure. Knowledge is power.

As today comes to an end, I am glad we had a fun weekend. Yesterday Paul and I were able to ride jet ski’s on the lake. It was so fun. At one point I signaled to Paul to look at the rainbow. We both stopped in the middle of Lake Ontario to enjoy the rainbow. Paul snapped a picture of me. When Paul shared the photo to our family group chat, I remarked that I was the pot of gold at the end of the rainbow (I really enjoy fluffing my own ego and sometimes am over the top about it….). We all got a good laugh. Just call me “Pot of gold Patti”.