The other morning I tasked myself with listing all of Esmé’s current doctors. I have an old list but I needed an updated one. The list only includes doctors she still sees, not the handful I have “fired.” Some we see as often as every few weeks. Most we see every few months. There are one or two on the list we haven’t seen in around a year. Some are local and some are at our children’s hospital–we often have two to a specialty.
She has twenty active doctors. 2-0.
That is just doctors. She also has two homecare nurses, a physical therapist, a speech therapist, and a special ed teacher on the team.
At different times we have had different doctors “spearheading” the team, so to speak. We kind of went from a focus on GI, to neuromuscular, to epileptologist, back to GI. But right now, with her seizures relatively well controlled and her recent fundoplication correction…we seem to be drifting a bit without a captain.
Don’t get me wrong. I am totally ok that there is nothing so pressing that we need to have a captain. But it is weird.
I have thrown myself into researching PCDH19 Related Epilepsy–emailing experts who do research into it, offering my help to the PCDH19 Alliance, coming up with ideas on how to start local fundraising efforts, lining up people to help me with these projects–but I am in a solid holding pattern on most of it right now…waiting for return emails, directives, etc. I am even waiting for one doctor to send me more articles to read that I can’t get myself online…so my research is stalled.
What I need now is a PCDH19 captain, someone who can answer (and is interested in answering) our questions about the obscure and understudied diagnosis we have for Esmé. In a weird way I feel like we are constantly outgrowing our doctors. Increasingly I find I have questions that no one can answer. And I don’t mean this the way it sounds. We have fantastic doctors, some are beyond fantastic and in the realm of mythical creatures they are so good…but they don’t all do nothing but think about Esmé all day (nor should they, I guess). We have questions that sub sub specialists cannot answer with the nuance that I want at this point.
And, as is so typical of our journey so far, even if we found such a captain, we still don’t know if PCDH19 is the explanation for all of Esmé’s health issues…so we might still be looking for someone or something more.
I guess it is our never-ending journey. For the moment I am just going to try to enjoy the stillness.