The Daughter Chronicles

Sunday, December 22, 2013

Mia's medical mayhem!

So just when I was going to sit down and write about Mia's follow-up visit to her orthopedic surgeon, something else happened. It's never dull with Mia, unfortunately!

After Mia's hip surgeries, she had to see the orthopedic surgeon every so often for X-rays so he could make sure everything was well. Last October, they told me I could wait a year to see him, but when I called for an appointment in November, they told me I should have been back in six months. THEY LIE!!!! Oh well. So a few weeks ago, I took her on her standard pilgrimage to Phoenix Children's Hospital to see the doctor. We have been concerned about her high muscle tone and what we should do moving forward, because we want to make sure that she's still able to stretch her legs even if she doesn't stand that often. If you don't stretch, your muscles get shorter and eventually, you can't stretch them even if you want to. As much as Mia sits all day, we still want her to be able to stand in a stander every once in a while, but it's still very hard to stretch her legs and we wanted the doctor to take a look at that.

He took X-rays of her legs, but when he came in to see her, he thought it would be a good idea to X-ray her back, too. Everyone who works with her has been concerned about scoliosis for some time, so we've been keeping an eye on it. It had been a while since her back had been X-rayed, though, so the doctor sent her back to the imaging room! It turns out he was wise to do so - her back was at 45 degrees, which I guess is bad? It sounds bad, doesn't it? (Hey, it's called the Cobb angle! What do you know?) He wasn't as concerned with her leg muscles, because a lot of that comes from the scoliosis. I do need to call her physiatrist and talk to her about her Baclofen amount - that's the medication that relaxes her muscles. Her physiatrist has talked about a Baclofen pump, which releases it steadily into her body, but I'm not sure if she weighs enough for one. Her orthopedic surgeon also mentioned that the pump is as big as a hockey puck and it's attached to her gut, so it actually makes scoliosis worse because kids sit oddly when they have one. So I'll have to ask the physiatrist about increasing her dosage and seeing if that makes a difference. The orthopedic surgeon also mentioned that her neurosurgeon (she has a LOT of doctors!) could perform a rhizotomy, which would destroy some of the nerve roots to lessen the spasticity of her muscles. But that's something we'll have to discuss with him!

The scoliosis, though, concerned her orthopedic surgeon. He mentioned that she's too short to get rods in her back, and I'm not sure if we would do that anyway, because it sounds awful. For now, he suggested a soft back brace, which will at least slow the degradation down for a while. I've made an appointment with the guy who fashioned her AFOs and her hand splint, so in January, she'll be heading off to get more body armor. Soon she'll be Robocop and all our crime prevention problems will be solved! Until someone comes up with a way to replace bones and tendons with robotic parts, Mia is going to have issues. I also called the people who made her wheelchair, because you can modify a chair to help alleviate scoliosis. I'm not sure if they'll be able to modify this one or if she'll need a whole new chair, but we'll see. I'm sure it will be the latter, because of course it will.

All that news was annoying enough. Then, this past Friday, I compounded the problem. I was getting Mia ready for school and I sat her up in bed to brush her hair. When I do that, she always pulls her legs up because it's more comfortable (that whole stretching thing, you know). This makes her unstable, as you might imagine, and it's always hard to brush her hair when she's swaying so much (even though she holds onto the railing on the side of the bed). On this morning, she was more unstable than usual, and so I did something stupid: I put my hand on her left thigh, right above her knee, and pushed down a little to stretch her leg. I've done it before, and usually there's no problem. However, this time she screeched really loudly, and I knew something was wrong. She calmed down, and I figured it was just an unusually tight muscle spasm and she'd be fine. I got her to school and told the nurse that she wasn't feeling great. The nurse called before they sent her home and said she was still screeching when they got her out of her chair and tried to change her. So when she got home, I put her in bed and let her relax. We could tell that she was still uncomfortable, but we figured we'd let her sleep on it, and if it was just an aching muscle, it might feel better in the morning.

On Saturday it wasn't much better - a little, but not much - so I took her to the emergency room at Phoenix Children's (it's not the closest hospital, but since they have all her records, we take her there if time isn't a big constraint). They X-rayed her and found ... a broken tibia! Yay! Yes, I actually broke the top of her shinbone, at the back of her knee. As you might imagine, I'm feeling quite awful right now. I mentioned when she went to the endocrinologist that he was surprised she hadn't fractured a bone yet because her bone density was so low, and of course, a few months later, she fractures a bone. We've been working on getting her off the medication that caused her low density, but it hasn't been long enough for her bones to recover. So she fractured a bone. Oh joy.

They put a cast on it and told me that she needs to see the orthopedic doctor in a week, because it might be healed by then. Or it might take another week. Either way, she's still unhappy, but at least her knee is immobilized and presumably it's healing. The good news is, of course, that it's Christmas break, so she's not going back to school until the 6th of January. That means she can just lie around in bed or sit in her chair, and we don't have to move her too much. She can chillax and heal without worrying about going to school and moving around too much. I hope that by Monday the 6th she's either out of her cast or almost ready to get out of it. That would be nice.

Logically, I know that it was probably a matter of time before she had a fracture. That doesn't relieve my guilt at all. I feel terrible, even though I had done what I did many times before and I didn't push her leg very hard - I know that her leg doesn't stretch very well, so I don't push down on it very hard at all. I just wanted to stabilize her a bit while I brushed her hair, and she got unlucky (I know, Mia's unlucky - how shocking). I'm very upset about it.

We're getting her onto different medication that won't mess up her bones as much, and we're hoping that over the next year or so her bones can get stronger (bones don't get stronger forever, so we're hoping they get stronger quickly in the next year before they slowly start to get weaker). In the meantime, we're hoping this fracture heals quickly and well.

Man, I feel bad for Mia. She's too awesome to have to deal with this!

2 Comments:

  • sounds like you are doing a great job. With all the medications and issues, I am sure you are more than careful and should not feel bad, easier said than done I know. Sounds like you are an amazing Dad :)

    By Anonymous Anonymous, at 22/12/13 2:33 PM  

  • I was afraid your story was going there. Knowing intellectually it wasn't your fault is probably scant comfort! As I say not often enough, you're a great dad.

    By Blogger Roger Owen Green, at 23/12/13 8:11 AM  

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