8/24/21

 Swirling and twirling thoughts made my sleep last night less than stellar. How do I expedite Medicaid and Medicare? Can you speed up the government agencies? Impossible.  I can’t qualify for paid family leave until November. We can’t do the transplant until my birth control has been removed for 6 weeks. Need to schedule that appointment. My work is going through a transition in November with a change in ownership. How will this factor into the safety of my job? How do people do this without going broke? What about Ethan’s college classes? We have to move again. So that was my night last night.

The room we are in is small. It felt even smaller with the walls closing in. We all need to have these freak out, woah is me moments. In addition to the appointment we attended today, I was mulling. On the back burner I was formulating a plan. Tuning and fine tuning….and more fine tuning.  Throw in a little bit of closing your eyes and jumping….and just knowing things will work out. As with other situations I will not bow down to my hell. Sometimes my thoughts are my own hell.

Since I didn’t sleep, I showered and got ready for the day. I made a breakfast and coffee run around 7:30 am. Paul and Ethan were still asleep. Coffee helps me gain the strength to fight hell. Also, walking helps my thinking. 

We met with our transplant nephrologist. We were going through the different departments that we still needed to touch base with. Nutrition, neurology, endocrine, social work, urology, pulmonary hypertension team….geez I thought we were almost done. Ethan’s surgeon also wanted an ultrasound done on some more of Ethan’s vessels. So I asked to squeeze in what we could. It included an ultrasound. Ethan was pissed.

Ethan did get to see his PT car guy. They got to visit for about 15 minutes. On Ethans trip down to see him, he ran into his occupational therapist that he was so fond of. Ethan was so excited. Take the good with the bad right?

So as we waited for insurance to approve the emergency ultrasound they were squeezing in, Ethan crabbed about how he didn’t want to be there and he didn’t want to have any more tests done. Completely understandable. It didn’t help that we were both exhausted. 

Ethan slept on the aerobed. Our room wasn’t big enough for us to fully inflate the aerobed so we was squeezed in and not overly comfortable. Pair that with lots of walking and this kid is tired. Tired and now crabby.

We talked about insurance not approving this but they quickly came through. Imaging was done on both leg vessels as well as a dominos vessels. They were looking for clots and making sure the vessels looked good.

We had a relaxing afternoon. I took a nap.

We spent almost 5 hours at the restaurant this evening. We met some of our cherished 9Tower friends for dinner. It was wonderful to see them. Ethan really had a special night. We all did as we relived what a pain in the ass he was for them. Each and everyone will hold a special place in our hearts. It was a wonderful evening. This is the face of  a kid that is truly thankful for all of the people involved with his recovery.