6/7/22

 Today Ethan had a neurology appointment. We are in phase one of converting some of his care over to Rochester Doctors. 

Ethan was super negative about everything we talked about in the car. Health care, politics, his progress, college, everything. I was growing tired of pointing out all the bright spots within his negative statement. He was sucking my soul down to the depths of hell. I became short with him and was annoyed.

We arrived at the appointment and at that point I had stopped talking, as a coping skill to deal with his negativity. 

The doctor quickly came in. She did a series of tests on him. She could tell his tacro was unregulated STILL because of his excessive tremors. Other than that, he is doing well. We discussed his seizure medication. It has a side effect of grumpiness, depression and fatigue. Ethan has to be on it another 2 years before even considering taking him off.

I expressed my concerns of him having another seizure while trying to wean him off. In about two years we will revisit the benefits vs. the risks to discontinue it.

I spoke with the hematologist today and she said we have reached the milestone of discontinuing the Coumadin. We will now start aspirin therapy. This is great news considering that he has his heart biopsy next month and there is a song and dance to keep Ethan safe during biopsy when on Coumadin. It involves discontinuing Coumadin for 5 days and “bridging the anticoagulation” with a shorter acting anti-coagulate. Usually it is in the form of injections, which burn.

On the way home, Ethan talked about feeling relieved. He apologized for being so negative earlier. He said that he gets so wound up for these appointments and that he has been anxious all day. While I can’t imagine what it is like from his point of view, I can totally understand from a parent point of view. I have been having anxiety for Ethan’s appointments ever since the first heart issue, when he was 9 months old.

When the appointments come up, I am uneasy for the entire day or so beforehand. Worry, worry, worry. Stomached in knots. Ugh!

I am glad to say that this appointment went smooth. We are relieved. Keep moving forward.