Half way to the end of mask isolation and being HOME. The thought of 50 more days here makes me want to scream and run to the hills though. While still hoping we can go home sooner, we are extremely thankful for how well Naomi continues to do.
Yesterday, she was dancing and singing around the room and made up a song about wanting to go home or to the beach RIGHT now. It was 10pm so all she got was a trip downstairs to the kitchen for a piece of apple pie. But her song and dance was really funny. I told her to keep practicing for Monday’s appt with the doctor.
Another funny moment was when Naomi was doing splits with one foot on my bed and another on Micayah’s bed. He was working on his computer and she was being really crazy. But I told him that she was fine and he should settle down. His reply was, “I know SHE has platelets now, but my computer does NOT!”
We spent Ash Wednesday all together. We went to the COH chapel for Mass and our Ashes. Then, I needed prescriptions refilled while there. We played UNO and each did our own thing for a while, but it was nice to all be in the same room and together. Did I really just say that?
We got some fantastic news on Tuesday. Naomi was billed over $10,000 for an injection that she received in Oct 2013 when severely neutropenic. It was arranged through Trishia, our case manager at NCCF that the injection would be a no-cost free sample. But since that arrangement was made, Tricia left NCCF. I was not sure how to handle the situation and stuck the bilk on a pile and tried to ignore it. That worked for a few weeks.
Last week, CCCN called to find out about me making larger payments. It was a reminder that the amount due to them is not accurate and needed attention. So, on Monday night, I took some time to start an email that would be CC’d to a group of people among which SOMEONE could help solve this $10,000 dilemma……. Maybe. I honestly was cursing the situation in my head, thought I was wasting my time and woke the next morning having forgotten about it!
By the time I finally got around to checking my email, it was nearly 11am and there were quite a few responses to that email AND it was passed on to some senior billing specialists at CCCN. Our current case manager at NCCF, Chrissy, who I have not even met face-to-face and had to go online to see a photo of her, and deserves a lunch and a hug next time I am in Vegas, found notes documenting Trishia’s arrangement of a free sample injection for Naomi! By the end of the business day on Tuesday, we were informed that the charge was made in error, reversed and Aetna would be refunded the portion they paid. What a Blessing!
Yesterday, we spent some time looking at the spreadsheet I have made of Naomi’s lab results. Her last platelet transfusion was on Day +11. Her last red blood transfusion was on Day +26. Now, at Day +50, I am so thankful that we can consider how we will celebrate the day!
3 thoughts on “Day +50!!!!!!”
Dear Naomi, I hope all of you are doing well and enjoying the time you have together.Me I’m getting back into drawing again. I enjoy it so much. 🙂 Take care Love Uncle Ross
Many prayers for all of you with lots of Love 🙂
Thinking of you, too, Ross. We love you.