I’m rallying the kids right now to hurry up
and get out the door – wish me luck. Today is an exciting day. We are making
the one and a half hour trek to the Children’s hospital to go see a sparkly-new
specialist to get her perspective on our son’s undiagnosed disorder.
I don’t want to get my hopes up that
anything new will come of this – but I do want to maximize our chances of
getting the most out of this wonderful doctor. To that end, I went down the
rabbit hole, the vortex, of what we all call The Binder. Woefully incomplete, too
late in starting it, it is where I keep our version of his medical records, his
OT, PT, speech pathology and many, more reportss; whatever I can put in there
is there. I do this because in 13 years of acute and chronic medical caregiving,
I can’t remember it all. It is where I thought I might be able to research a
summary of all his symptoms, his history and his milestones. It is my one best
hope of being able to compile and summarize his life for the new doctor.
I wish it were more complete. In the
beginning – those first several years – I didn’t know I’d need these records. I
didn’t know I’d be here 13 years later, still with no answers. 13 years ago I
had a naïve faith in The System. I had no idea that I’d need to keep my own records.
I had no idea of what a pain it was to track down all that information later.
Hell, I had no idea that I’d need any of that information later. Not for the
first time I wish I had the ability to easily go and find those missing reports
to fill in those blanks.
Seeing someone new means giving her our
history, his history. It’s been a long 13 years with a lot of information. It’s
all there in the records – his milestones, his symptoms. Unfortunately, I have
no easy access to that history. To be honest, we, the family, are the ones who
can tease apart the information and give it context. We are the ones who can
lay it out for the doctor to analyze with her perspective. Together, as a team,
we have a chance for answers. But first we need access. We NEED access. Where
are our accessible electronic health records?
I had no idea that 13 years later I’d be
pinning my hopes (hopes, please get crammed back down there, you have no place
out here), on a new doctor, a new perspective. But I need to get her the best
information I have. I have to rely on the spotty records I have, the best that
I can recall. This isn’t good enough for him. We can do better.
So here’s what I’ve come to after hours of
pouring through the information I do have and writing up the summary I came up
with.
1. Our version of The Binder has a LOT of holes. We are missing more
than I thought and I find that very distressing. I need a plan to fill those
holes.
2. After writing our summary, I realize that we minimize a lot of what our son has gone through. I’m
not sure if that’s good or bad. Maybe a bit of both? We don’t tend to dwell on
the negative, but maybe we should celebrate more how much he/we accomplish in
the face of difficulty.
3. Going through The Binder once in a while is probably a good thing to
lend perspective and ensure quality. Some of those reports – lets just say
ensuring accuracy might be a goal for the future.
4. I don’t want access to
my electronic health records. I need access to our health records. We all know
that it will lead to better care for my son, my family. And I know it will lead
to better care for others.
