9/22/21

 

Ahhhhhh a day off. I of course started my day off with coffee. I then drafted a letter, listed all of Ethan’s doctors complete with addresses and phone numbers. Made some more copies of medical records and it took me all of only a little over 2 hours. 

I had to drop off some water and dialysate samples to the office across town. This is how they make sure that Ethan’s dialysis treatments are most effective.

I picked Ethan up from his college lab.  When we arrived home, we started dialysis. While on dialysis, we had a zoom call with Ethan’s hematologist.

Ethan’s neutrophils  are dipping low. The neutrophils are like the soldiers of the immune system. This puts Ethan at risk for picking up more infections. The normal range for neutrophils is 1.8 -5.4. Ethan is measuring in at 1.2. If he dips to 0.5, a fever or infection becomes life threatening because there are no “soldiers” to fight the infection battle. His immune system needs a draft.

Ethan’s hematologist is thinking it could be a side effect of one of the medications he is taking. One of his immune suppressant levels was running high, which would make sense why his soldiers are not present. The medication makes them go to sleep and not do what they need to do. His immune system prevents more from being made because that is what the medication does.

We are in the process of getting that under control, again, had we been approved for that medication way back when, we likely wouldn’t be having this problem. But as the insurance company has dictated, not only does Ethan require additional medication at a cost to them, he also requires more frequent blood draws on their dime as well as  more follow up appointments at their expense. It seems like the doctor that denied us has cost the insurance company thousands of dollars at this point as well as countless hours of missed wages for me and trauma for Ethan. Smooth move ex-lax. 

I am a little salty about it, but it does make me feel better that their decision has cost them thousands of dollars at this point. No bad decision comes without consequence.

I guess I can guarantee that the other medication would work better. It was the first choice so I assume it would. So I guess it’s not fair to just assume, but I do it anyway. Personality flaw. Ha!

The rest of the evening went well. It is getting harder to make plans into late fall not knowing where we will be. But we will do what we can. We have lots of things to look forward to.