5/21

Working hard to achieve the goal of home dialysis. Literally the only thing I won’t like about it is that our nurse won’t be with us. We are moving right along in our training.

Ethan’s tongue is still bugging him but the mouthwash helps. He has now taken to vomiting from excess saliva in his mouth. So that’s fun. Poor kid.

After dialysis I grabbed a quick bite to eat, handed Ethan over to his sister’s s care and went to work.

After work I popped by the pharmacy to pick up a new medication they are starting him on. This will take the place of one of his forever drugs that prevents rejection. It turns out that Ethan’s blood levels aren’t within the therapeutic range after weeks of adjusting the dose. This puts Ethan at risk for rejection. 

Of course we can’t get the medication because the insurance company is giving us a hard time. It just means more time that Ethan is not therapeutic and more phone calls for me to make in all my spare time.

I also had someone from Strong call to schedule Ethan’s next echo in Rochester. At our appointment yesterday, we were told we are alternating with Rochester and NYC each month for our check ups. This month was Rochester, next month it is NYC, then in July, Rochester. We have been doing the middle of the month consistently for the echo’s since December so it only makes sense to follow this trend.

When I spoke with the lady today, you can imagine my surprise when she said that our appointment would be less than 2 weeks from Ethan’s appointment in NYC. So I asked her to double check that date. She told me that it is the only date the doctor discussed for us to come in. I insisted in a polite way she check into it more. She said she would “send and email” about it to the doctor. I thanked her and also am sending an email to the doctor. More things to keep track of. I also am supposed to be setting up an appointment to talk to someone about medicade. I wish this was a paying job.

As much as there were annoyances today, I did feel good about picking up groceries and then sitting out on ur patio with the dogs, Avery and her rabbit. Ethan spent time inside where it was cooler. He was eating. He ate so much. Eating is a bright spot!