Tonight's post is one of rage and frustration. Below is a long excerpt of an email Neil and I composed to the company that we've used to purchase a variety of devices including AFO's aka his leg braces or boots as we affectionately call them.
I was actually so mad and angry I started crying in the car on the way home. This is a long, probably pointless read for many of you, but I feel better. I guess I didn't mention that this blog is cathartic for me as I try to balance a full-time job, part-time therapist, patient advocate, Mito cure seeker and most importantly, loving mom.
The past two months have proved to be an excruciatingly painful relationship with TMC Orthopedic.
A little background, my two year old son, William Martin, has been diagnosed with a mitochondrial disorder called Leigh’s Disease. A “side effect” of this is that he has low tone and needs supportive devices such as AFO’s to walk.
Since August 2010, we had a good relationship with your organization. When it came time to get Will a new set of AFO’s we scheduled an appointment on Tuesday, May 24, 2011 at the 1960 location. That meeting was a great visit and Will’s physical therapist also attended to discuss the best options for Will. We left with the intent to get a prescription from Will's doctor for a new, better fitting pair of AFO’s for Will.
Now, two months later, I’m still waiting. And believe me; it’s not for lack of trying to communicate with your staff.
Initially the exchange of information between the doctor, TMC Orthopedic and me appeared ineffective – there was confusion on what was to be ordered and where the prescription was. That was resolved the week of June 13 after countless phone calls on my part to try and track down a prescription that had been sent to your staff.
From June 13 – July 27 (with the exception of the week of June 26) I placed WEEKLY phone calls to your staff, specifically Kendra and Kevin at the 1960 location. Things never seemed to “appear” and call backs that were promised never happened.
Finally, during a call I placed on Wed. July 27, “magically” the order appeared in your system. It was dated July 12. More than two weeks prior. And remember, I’ve been calling and asking about this order every week.
Kevin was the one who magically found the order, understood my disappointment in the delay and offered to have Will’s AFO’s overnight shipped to the 1960 location. We agreed on a Monday, Aug. 1 at 5 p.m. appointment. Kevin told me if there was a problem, he would call me and even confirmed my cell phone number. While my frustration level was still high, I was relieved this problem was getting solved and appreciated that Kevin offered to have the AFOs overnight shipped.
Assuming he had done his job, I drove from downtown Houston to your 1960 location to get the AFOs. Upon a 10 minute wait at arrival, Kevin came out and told me that the AFOs had not arrived and that he couldn’t reach his procurement contact and had no idea when they might arrive.
To recap, this has taken more than TWO MONTHS to order a pair of AFOs. For more than TWO WEEKS this order sat in your 1960 office inbox while my son’s toes were protruding over the edge of his current AFOs.
The letter goes on about our request for a timely response. I of course defined what timely means since they clearly have no concept.
I will try to post something positive tomorrow to make up for my angry rant. Maybe one day I will post a picture of Will's new "boots" - you know, in two months when they finally arrive and his toes are no longer attached to his feet.