Turning the corner?
Her surgery was on 8 April, and all went well. It was far shorter than I thought it would be - the doctor told us it would be about four hours, but I didn't know if that was from when she disappeared to when she was finished or when he opened her up to when she was finished, because she went back with the anesthesiologist at 8 o'clock (in the morning) and the doctor didn't start until a little after 9, and he was done two hours later. He was pleased with the surgery, as he said he got her a lot straighter than he thought he would be able to get her - her back was curved so much that he said there was little chance of making it completely straight, but he wanted to get it within acceptable parameters, and I guess it was better than he thought. She had to spend a few days in the hospital, of course, but they're keen to get her out of there, so we were hoping it wouldn't be a long stay. She managed to get discharged the following Monday (the 13th), and she settled down in her hospital bed in her bedroom for a while.
She was okay for a few weeks, but then she got a mild fever, which is always annoying. It never got too high, and it often came down, but it persisted. I took her to the ER on 30 April, because it rose that night and, of course, her pediatrician was unavailable. Krys noticed that along her spine, it seemed a bit spongy, too, which was probably not ideal. The night at the ER was pretty awful - we waited for almost three hours in the waiting room, and I told them I was going to leave because she could just as easily sleep at home and I could call the doctor in the morning. I don't know if that spurred them into action (the nurse I spoke to was very sympathetic, but she said they kept having higher priority emergencies come in, which, fair enough, but then I could just go home, right?), but soon after that, we got into a room. Mia slept fitfully through the night, but I was awake the entire time, and then took blood and ran tests and concluded that they had no idea what was causing the fever. They asked if I wanted to admit her, but I said I would just take her home, as she had an appointment with the surgeon the next week and if the fever got worse, I'd just bring her back to the ER. So that was that.
I did see the surgeon the next week, and he told me that she had some fluid build-up along the spine, which was not abnormal, and it usually caused a fever.
They're still not sure how the staph infection got in her - it could have happened during the first surgery, even though they try hard to sterilize everything. They don't think it was very much, because it took so long to grow and wasn't even noticeable when the surgeon looked at her a few days earlier - in fact, she really didn't have any outward signs of it even that Saturday, except for the fever.
Her doctor put her on an aggressive antibiotic regimen, as she had a PICC line in her arm for six weeks, and we gave her antibiotics three times a day, waking her up every night between about 9.30 and 10.30 to do so (we didn't try to wake her, but she usually did). We had to make sure there wasn't any air in the saline we gave her, because, you know, that could kill her. Good times! She didn't love it, but she dealt with it. She also had to take an oral antibiotic - Rifampin - that we gave to her through her G-tube which came in capsule form, so I empty it into water and then put it through the tube. The powder in the capsule is red, and it stains everything. It's quite annoying. Her PICC line is out, though, and we've moved on to a different oral antibiotic, which we'll give her for at least six months. The doctor originally said six months, but the last time I spoke to him, he said a year, so I guess I'll find out in a few months when we go in for a follow appointment. And, because it's Mia, she got a yeast infection, presumably from the antibiotic.
She saw the doctor on the 11th of June, and he took her stitches out, and her back looks pretty good (I mean, she has a long scar up it, but the skin is closed and it's not red or inflamed at all). We're finally able to give her a good bath (we couldn't get the PICC line wet at all, so even though she had her stitches out, she was still wearing a garbage bag over her arm), and she seems perfectly fine with not being woken up in the middle of the night. She is sitting more often and longer every day, even though she's still not ready to sit all day. We're still keeping her fancy chair in her bedroom, because we have to transfer her back to her bed so often, but she's getting better. So that's nice.
She didn't get to go back to school because of the infection, but she was out of the hospital on the last day, so I took her to her "promotion" ceremony. She sat very well, and everyone was very happy to see her. She's been going to that school for five years, so a lot of people have gotten to know her well, and they were happy they got a chance to say goodbye. She's been well enough to go to her special needs summer camp, although they've had to give her lots of breaks in the bean bag because her back gets tired. Obviously, we're hoping that by mid-August, when school starts, she'll be recovered enough to sit most of the day. She finally started physical therapy again, as she hadn't been cleared for that, but now she is.
Mia has been forced to be fairly tough throughout her life, unfortunately, and she's been pretty good through all this. Her hips hurt her, I think, probably because she's been lying down so much and hasn't had a chance to stretch them, but we hope that will change now that she's cleared for therapy. She doesn't really mind the hospital except for the people coming in at all hours of the night and prodding at her, and even that just makes her whine a little. She's still our happy girl, and I think the surgery will help her immensely, as she's already sitting so much straighter and we hope this will help with her standing. Her PT put her in a stander last week and she didn't have any problems with it. She still whines a lot, but, I mean, wouldn't you?
Here's the most recent photograph of her back - it looks really good:
And here are her X-rays from before her surgery and after. The first two are from before, and the next two are from after. The difference is pretty dramatic. Note in the last one, how much hardware is actually inside her. Yikes.
I was amazed when I saw how much better her spine looks. Technology, right?
So that's the latest update on Mia. We always keep our fingers crossed that she won't have to go back to the hospital, so we're doing it now!