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.