8/26/21

Today was long. I had many phone calls and emails to field as it seems the scramble is on to get this kid on the surgical schedule. 

First, his biopsy was negative for any signs of rejection. Yeah!!!!!! 

I had a meeting for clearance with the pulmonary hypertension team at 2:00. I rearranged my work schedule so that I could take this meeting at home with Ethan. (He has to be present for them to talk to me because he is 18).

I pulled in my driveway at 1:59. Ran in the house and logged into the zoom meeting. I hadn’t had anything to eat at all and was a bit starving. I ate while I waited……and waited and waited. After 30 minutes, my lunch time was up and I had to go back to work. I sent a note to Ethan’s transplant coordinator letting her know that the meeting was a flip and that we would need to reschedule.

I arrived back at work and my phone rang. It was the pulmonary hypertension team asking if I could do the meeting. Ugh! I specifically allotted time so minimize my hours taken away from work and now I had to clock out or risk having to wait for this meeting to get clearance for transplant.

Ethan’s doctor apologized profusely. It was that moment that my irritation turned to forgiveness. We are all human. We all make mistakes. Our mistakes sometimes cause inconvenience to others. Life happens

I am glad I took the call. As it turns out, Ethan’s numbers look good and his doctor decided to discontinue one of his pulmonary hypertension medications. WOW! It is one of his pain in the ass drugs too. I have to call a pharmacy out of state to have it ordered. I have about 5 minutes of questions I have to go through to have them decide to refill it. Then I have to count the pills I have left, go over all of his medications with the pharmacist to make sure they’re are no adverse affects. Then after another 5 minutes….we had medications on the way. One less phone call makes my day.

I scheduled my appointment to have my IUD removed. Transplant can’t happen for 6 weeks  after that. 

I scheduled Ethan’s annual heart cath in October. This sounds like it is going to be a real pain in the neck. We won’t be leaving to go home the day of the cath. Maybe we can avoid some car vomiting.

It was a long day but it was productive.