A little bit of background with Dylan's plates and screws. In January of 2016 Dylan had the hemiepiphysiodesis which was where they put the screws in growth plates in the front of her femurs. The idea was that she had tight hamstrings and couldn't fully extend her legs and while she currently walked, when she got older and weighed more, her quads would not be able to support her weight. With the screws in place, as her legs grew in the back, and not the front, the hamstrings would gradually stretch.
Long story short - the 'small incisions' to do it were not small, it was a rough recovery and Dylan's never walked alone again except for a few assisted steps. I personally think the surgeons in Salt Lake were a little too eager to do this surgery since it was pioneered there. But that's hind sight, and honestly, frustration, speaking and we were definitely on board at the time so it is what it is.
With her not walking we always questioned whether or not she was in pain because of the surgery or if something was off because of it. We could tell she had the desire to walk, man she loved walking, but just never did it again. A year ago I had an appointment with the Orthopedic surgeon here, Dr. A. and we took x-rays and looked at everything. It was a rough appointment where the doctor basically told me that the amount of extension she needed could never be achieved with this particular surgery. She said it's not the approach that she would have taken for what Dylan needs but she would be willing to ride it out for a little while with a stander and Physical Therapy to see where we go. I left this appointment quite disappointed that this was the route we had taken and that maybe I wasn't given the whole story, or all the options.
Deciding to be a little more aggressive about it and at the advice of her Physical Therapist, who also questioned whether or not something felt off to Dylan, a couple weeks later I spoke specifically to the Physiatrist about what could be done. The Physiatrist looked at the notes from the Orthopedic appointment which basically said "Everything looks great." So nothing, I got no where. The Physiatrist is relying on the consultation with the Orthopedic doctor for their information and the Ortho is saying things look good.
And this is where we've been for a year. Until now.
Over the last month or two I have been struggling because what little walking Dylan was doing prior to the school year ending she lost entirely over the summer. She's no longer pulling to stand, taking steps, and the degree that she can straighten her legs is getting even less. She got de-moted in physical therapy from twice a week to once a week because she wasn't showing measurable improvement. In addition, she's showing signs of puberty which means these stupid (I'm allowed to say they are stupid now right?) screws and the idea behind them would no longer work anyway.
I'm kind of fired up by the time we get to this spinal defects clinic a couple weeks ago because I don't want to bust our buns getting her to make 'measurable improvements' if they were just going to go in and remove the screws and she would have another surgery to set her back. I am kind of at the point of saying 'go in, take the screws out, do what you think we need to do, but can we get on the healing process to get this behind us?'
Dr. A is out on Maternity leave so I will be seeing the same Ortho I saw in clinic last year. (I had seen her and then followed up with Dr. A in an 'in office' appointment, I don't know why...) Let's call her Dr. N even though I only know her by her first name, which is kind of funny, I like her... she's casual, she's great. I express my frustration and what I was thinking and she puts in the orders for Dylan to get new x-rays close to our house to be done at our convenience. I waited until after a PT appt for Dylan, which was last Wednesday and we went in and got them done.
I know I've taken a long time to get here but STICK WITH ME. After we did the x-rays I took Dylan to school, walked in the door to my house and Dr. N is calling me. She told me she reviewed the x-rays with the Chief Surgeon, Dr. L and they have decided that the screws are far too large for the job. He said there is the possibility that they are causing discomfort for Dylan especially if her muscle is having to stretch over the screws which it looks like is the case. In addition because of her lack of walking her femurs are showing ostepenia, a loss of bone density compared to last year's x-ray. Dr. L said he would like to make an appointment so I can meet with him specifically and discuss the options we have.
ARE YOU KIDDING ME? No really... ARE YOU FREAKING KIDDING ME?! She's not walking and struggling and her hamstrings and extension is tighter because of this and a: not only did it happen in the first place, but b: we had an opportunity to address this a year ago and I was told things were fine. (Or at least that's what it said in the notes...) She might be uncomfortable?!
What does this look like for us now? I am meeting with Dr. L in two weeks where you bet I will address the concerns that I have had. On Monday I meet with the Physiatrist and Dylan's PCP at the Medically Complex children's clinic. Hopefully we will be able to get some answers, find a solutions, and be able to get things moving again in the next couple of weeks.
We are blessed that Dr. A went on maternity leave. I will ask to not have her be Dylan's primary Otho. Honestly, if everything looked fine to her and/or she wasn't familiar with the procedure, it still doesn't explain the discrepancy between what we spoke about and what she noted in Dylan's file. That's an even larger concern to me.
We are blessed that even though Dylan might be uncomfortable she still has the desire to walk and stand. Even though it's progressively gotten more difficult for her, she still tries. I think I might have given up a long time ago myself. We just need to pray that she will continue to have the desire so when her body is in the position to cooperate, she will be able to make improvements.
I remember her old PT Mike telling me that she has that drive and that's something that you can't teach kids, please please please, let her continue to have that. If she does I truly believe that she will walk again. And honestly, we don't really care if she walks... she never really walked where we wanted her to walk anyway, it's just that SHE loved to walk! It made her happy.
So that's my little update, I may or may not have more information on Monday after meeting with the Physiatrist but I definitely will have more information in two weeks after meeting with the surgeon.
