In many ways, 2014 was an incredibly blessed year. In other way it was the year medical practices and bureaucracies made me want to beat my head through a wall. The 31st was a beat-my-head-through-the-wall kind of day.
The second-hand wheelchair that Ella’s currently using is functional, but it doesn’t fit her quite right. Chairs are supposed to fit like prosthetics, and that’s difficult to do second-hand. So for the past two months, we’ve been working on the paperwork to get a wheelchair approved through our insurance. We got the pre-approval completed in early December, and were hoping to have it done before noon on the 31st. We hit our out of pocket max back in September, which meant that the co-pay for her chair would be pretty close to nothing if it were in 2014. 2015 would mean a co-pay of around $2,000. That’s a big difference, so we were scrambling to get it done.
By the end of the month, it was looking doubtful that it was going to get done. On the 31st, we found out why.
No one has ever officially diagnosed her as being unable to walk.
I’ll wait here while that sinks in.
Nine months after it all began. Seen months after she took her last step. Close to a dozen different specialists. Not one single one had ever sent in the diagnostic code for unable to walk. Not one.
I’m at a loss to explain how such a thing could happen, and am upset and embarrassed that I never thought to ask about it. What seems like simple logic to me is clearly not simple to any medical professional that we’ve seen. Red tape and egos have once again tripped us up, and I’ve had to tell her that we’re suspending our promise to be done.
She has to have a diagnosis, even if it’s nothing more that unexplained muscle weakness, because without it she can’t get any of the help she will need either now or later in life. Our peace is shattered, and we’re once again preparing to fight the medical establishment.
I just want to grab all the doctors by the shoulders and give them a good shake. It’s incompetence. Pure incompetence. And I keep wondering if they have any idea how much damage they’ve done.
They’ve hurt her prognosis, they’ve destroyed her confidence in medical professionals as people who help, and they’ve wreaked havoc through our family life. I have no answers or explanations for why we have gotten stuck in the incompetence cesspool, but I do know that it stinks down here.
That’s where 2014 ended for us. 2015 begins with us climbing out and going on a hunt for answers.