9/2/21

I woke up this morning and got ready for work. I had some time before our first phone meeting. I have a stack of paperwork waiting to be completed and retiring to the social security administration. I tried to start it last night but it was after 7:00 and really my brain becomes significantly less effective after like 5 or 6. The words were blending together and I just stopped.

This morning I got it done and signed. It is ready to be mailed and I feel good about that. 

We had our 7:30 appointment and it was not really that helpful. I sat home and waited for my 8:30 zoom appointment, losing time away from work, and at 8:35 got a call from the office saying the doctor was caught in traffic and it was rescheduled to 12:30. 

Annoying, but not really anyone’s fault. With the ridiculous weather they are having, it is no wonder why she was late. I couldn’t even really be upset. I was glad she was still able to meet as she is another box we have to check off to get Ethan the green light for transplant.

I went into work and then when it became time, rushed home for the 12:30 zoom appointment. It was with the hematologist in NYC. Apparently, Ethan had some bloodwork done in June that was never followed up on.  He had some values that had changed from his early dialysis days. We learned that they were concerned about one of his clotting factors.  Not overly concerned but concerned enough to start him back on aspirin because they are worried about his increased risk for blood clots after transplant. We made a tentative after transplant plan. This will be a bridge we will cross if we have to.

As I told Ethan about the increased risks….he said, I have had blood clots in my heart, my neck and my head. I am not really worried about blood clots. I laughed at his whimsical approach to it.

I have learned that you can make a plan but life really dictates what is going to happen.  All we can do is ask questions, educate ourselves, and to be an asset to our medical team by doing what is best medically for Ethan.

Then as my life has been these days, went back to work, then came home to do dialysis, feed the dogs, and go to bed…..with our fan in the window blowing in the beautifully cool air.