One of the issues that we've had with neurology has been difficulty with follow up and follow through. It took from September to November to get an initial appointment set up, and there are usually weeks to months between appointments. A new medication will appear to be helping, and then stop, and we call to update them and then...wait. And wait. And then some small adjustment is made, and we are told to keep our already-scheduled (or not-yet-scheduled!) appointment.
When we leave an appointment, we cannot EVER schedule the next one. We have to call the scheduler, and more than half of the time the schedule 'isn't open' for appointments yet in three months, or six weeks, or whatever. They can't match appointments up with the transplant team because those days are seizure days, not headache days. And so on and so on. Add to that the fact that I just feel like they aren't really paying attention? It's been tough.
The problem is that I know from experience that there are no local pediatric neurologists. The nearest to us is more than an hour away an he isn't taking new patients. The clinic at University Hospital is full. Rochester has a headache clinic for adults. So we hung on.
So starting over with someone new was a little scary (Fresh Start). We left Tuesday's appointment without a follow up appointment and the promise that the provider who saw us would be setting up appointments with a headache specialist, a pain management specialist and the pain management program.
I put a reminder in my phone to call in two weeks to check on the status of the appointments. It's what I do. I figure if they haven't called in two weeks, something 'got forgot' as it were. It's what I tell my patients to do.
While we were meeting Larry on Thursday, my phone kept pinging with new email messages. I ignored them - after all, odds were good it was a sale at Wayfair.com or something from Freecycle.
When I checked, though, there were three emails confirming appointments with providers I'd never heard of at the new medical system, all on the same day and location, all back-to-back in the afternoon of June 2nd. I haven't had the chance to check, but I'm guessing that it's neurology, pain management and pain management team - all set up within 48 hours of when we left our appointment, and all for less than a month from our original appointment.
These appointments are at Nemours DuPont Pediatrics in Wilmington, Delaware. It's 200.3 miles according to Mapquest, as opposed to 184.1 for CHOP. We have no need to see nephrology at that time, so we don't need to go the CHOP, but so far they haven't sent any records (gee. what a stunning surprise.) so I might call and see if I can at least get her MRI's on disc to take to the appointment.
It's actually scary to feel.....hope.
DeeDee
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