As I mentioned in a previous post, I was less than impressed with the Orthopaedic doctor we saw at the scoliosis clinic… and as a result, I’ve been less than enthusiastic about the back brace he commanded that Lil Z must wear. I was surprised by how quickly we got an appointment to do a mold of Lil Z’s back (especially as it required her to be put under general anaesthesia, which meant time in the operating theatre). However, no one really told me what to expect after the mold was made and I was quite happy for them to take their time making her brace.
Two weeks ago, however, the clinic that made the brace contacted me to book an appointment for it to be fitted. Again, I was seriously lacking enthusiasm.
Add to that the fact that poor Lil Z always seems to have the worst possible timing. Her puppy arrived and she ended up in hospital the next day. Her back brace arrived and the day before the fitting, she broke her leg… again.
And yes, I did say another break. We couldn’t believe it either. And the doctors in the Emergency Department almost didn’t believe it at all… If there is a positive side to Lil Z having three leg fractures now, it would be that we know the signs and that gives me the confidence to insist that something is wrong – even when it is incredibly difficult to put your finger on what, or where. It may sound bizarre, but one of the biggest signs is that Lil Z gets clammy hands. When I decided to take Lil Z to the hospital, I phoned QB and told him Z had clammy hands, to which he immediately responded “oh no, not another break!”
That Lil Z has broken various bones in her legs three times in her three short years – and none of those times can we identify anything that could have caused the break – worries me hugely. But I will save that discussion until after we’ve met with the specialists next week and have a better idea of what it all means and what we can do to prevent it happening again.
Lil Z’s broken leg immobilized in a cast made me feel even worse about the back brace. One of my greatest concerns about the brace from the start has been the discomfort factor. They’re hot, restrictive, uncomfortable and can cause pressure sores – and they’re meant to be worn 23 hours a day.
I know the scoliosis is a serious issue that can cause severe medical problems, including compromising her heart and lungs, as well as hindering her development. But at the same time, I have worked hard to get Lil Z happy, beginning to engage in the world around her, and sleeping through the night (which is essential for her development and my sanity). If a brace reverses these things, it essentially gives her a poorer quality of life. And that to me is as serious as the potential risks from scoliosis.
So, it was with a heavy heart that I took Lil Z to be fitted for her brace – known technically as a Thoraco-Lumbo-Sacral-Orthosis (TLSO). But I was actually in for a bit of a surprise.
The doctor who made her brace and fitted her in it was lovely. Totally unlike the scoliosis doctor. And he knew what he was doing. Apparently Lil Z’s brace was the 6,232nd TLSO he has made in his career – so the man has a bit of experience. He showed us how to put it on and take it off, and he marked how tight and where each velcro loop goes on the back of the brace (which looked a bit crazy at the time, but makes perfect sense now).
And the brace wasn’t so bad either. It doesn’t come up as high as some of the others I’ve seen. And it has a hole for her feeding tube (I’d been told apocryphal stories of having to remove the brace every time I needed to access her mickey button). And it was a lovely shade of “cupcake icing pink”.
Even more surprising is the fact that Lil Z doesn’t seem to mind wearing it. At all. The doctor recommended building her time in the brace up gradually. However, a week and a half on from the fitting, Lil Z can do a 20 hour stretch in it without any problems. She goes to sleep in it easily and it doesn’t seem to bother her at all during the night. And it is certainly not affecting her quality of life during the day, either.
This is such a massive relief, especially since the doctor thinks that the brace is really going to help Lil Z’s spinal curve. If Lil Z is lucky, she will spend the rest of her life in the TLSO. If she develops as the scoliosis doctor expects she will, she’ll wear the TLSO until she stops growing, at which point they will do surgery to insert metal rods into her back. And if she’s unlucky, the brace won’t work and she will have to get the spinal surgery earlier – and then probably again later to adjust it as she grows. So, unless things go badly wrong, Lil Z will be wearing her brace for a long time, and its good to know that doesn’t seem to be a problem for her.
Of course, new equipment (if you can call a brace ‘equipment’?) always comes with its own challenges, but these seem to be mainly for me, not Lil Z. For example, picking Lil Z up when she’s wearing the brace is definitely harder, not to mention between the brace and the cast, she’s now at least a kilo heavier. And the doctor suggested she wear a singlet under the brace, but then it is impossible to access her mickey button – so I’ve been cutting holes in all her singlets… The only real problem for Lil Z seems to be that the brace might cut into her legs a bit when she is sitting. But it is hard to tell when she has a cast on her left leg from toes to hip, so I’ll wait til the cast if off before I start lobbying for changes to her TLSO.
I always like to be right. But after several months of worry about Lil Z’s back brace, now that it has arrived, I’m quite pleased that in this case at least, I was wrong.