I spent 2 1/2 hours today driving hand-delivering 4-page letters to 12 of Q’s healthcare providers.
It wasn’t to complain.
They are all exemplary providers in their specialties. Because her care covers so many issues, I started wondering what they could do if they knew it all. If the liver doc knew about the UTIs. If the pharmacologist knew we’d added a med there’s a new research paper on. If the small percentage of people on drug X get a rare skin complication I want them to consider what is happening with my Q that maybe the dermatologist has seen.
Today wasn’t a day for waiting for one of them to fix one thing. It was to beg them to help my daughter and to ask that they brainstorm, collaborate, come at things differently, together or apart, ask other colleagues, think about more testing, think about med interactions, or even additional conditions that have been missed over the years.
Today they got pictures of her; one of her senior photos and one of her sleeping in an ER bed at midnight with a purple Build-A-Bear Workshop bear beside her.
The only thing I know is that her quality of life is truly suffering and they all needed to know exactly in what tangible ways. How she loses hope sometimes because of all the healthcare struggles. How she doesn’t feel well a lot of the time. And how sometimes it feels unbearable to live this way and unbearable for a parent to watch. I marvel at her daily that she keeps going. She in her 7th week of college in forensics.
Approaching them with a personal letter introducing all the specialities of care she is under along with pictures is the idea I had today. Maybe tomorrow I will have another one.
