11/20/24

 I have been feeling a bit stressed with Ethan’s medication change. The new ADHD medication can cause increased blood pressure and increased pulse which can be hard on the heart. 

Pair that with Ethan’s lab work from Saturday, with his potassium coming back in the danger zone. His potassium was in the zone that increases his chance of a cardiac event by 62%. He was started on a potassium binder which we picked up and started today. It is a powder that you mix with a drink. It is similar to drinking wet sand. There is no pill form of this medication either. It is a drink. Barf!

It works quickly but it is still one more thing that could go wrong. 

His kidney values came back the worst they have ever been. He was taken off the one medication that was supposed to help with that. His kidney function is at 50 % and will likely not improve. His body seems to be handling ok for right now.

He does have to go back for blood work but we may need to expedite that before his insurance runs out on November 30 th. Since there is no opportunity to set up coverage ahead of time (this still baffles me) he will have a lapse for a little bit before the new coverage kicks in. We just have to cross our fingers and hope for the best.

Ethan seems to be embracing the changes with minimal refusal so that is a blessing.

Ethan’s nephrologist’s recommendation is to drink more. He is already drinking 2-3 liters per day. His decline in kidney function seems to be due to an autoimmune response that we have know about for about a year and some change. His nephrologist is not being proactive which is frustrating.

Tomorrow marks the 4 year anniversary of his new heart. I am proud of his progress. The trauma of that experience is quietly present in our everyday lives. It has forever changed me and the way I process things. Not in a bad way. It was a learning experience I wish I never had to go through but it brought on huge growth in myself as a person. I can only speak for myself, but I know it has affected our family in multiple ways. Again, not always for the worse.

I think of our donor and her family. As we celebrate 4 more years with Ethan, they have missed their daughter, sister, friend etc. for four years. 

My bright side today was seeing Sarah. There was at one point where I was laughing so hard I couldn’t breathe. That is such a treasured gift.

As I lay down this evening, I think back to what that night was like 4 years ago. The waiting. Listening to the second hand on the clock without answers. Getting a visit from the surgeon letting me know that Ethan had suffered a cardiac arrest. That wasn’t on the agenda.

I think of my naive self just thinking it was going to be a week or two’s hospital stay. Boy was I wrong on that.

We now refer to things as pre transplant, post transplant. We make stroke jokes. Occasionally Ethan can’t remember things from his childhood. We chalk it up to the stroke and heavy drugs he was on.

Now this kid is working a full time job and moving forward with occasional roadblocks that we navigate as the present themselves.

I see Ethan at a healthy weight. I see him responsible for his medications, going to therapy and gaining control of his mental health. I am so proud of how far he has come. I hope to put many more of these anniversary years under our belt.

Cheers! Life is not perfect, but the wealth is measured with those you share it with.