The Daughter Chronicles

Monday, June 29, 2015

Turning the corner?

I haven't posted in two months because Mia's back surgery stuff has taken up so much of my time, and it's been dominating the news in our household, too, so it's just been hard to sit down and write when something new always comes up.
I've been updating a bit on Facebook, but now that she seems to be out of the woods at least a little, I thought it would be good to write a bit more in-depth here.

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.
The doctor told us to get her up as often as possible, so we tried to do that, too. I was hoping she could go back to school in May, because it was the last month of her time at her elementary school, and I knew everyone would want to see her before she moved on to junior high.

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.
He took a look at her back, which seemed fine. It wasn't red, and when a bit of fluid oozed out of a small open wound, he noted that it was clear with a bit of red mixed in, which meant it was just the fluid with some blood in it. He said it would have been a lot darker had it been infected. He said that the fluid would seep out through the skin over the course of some days, but to keep an eye on it. That sounded good to me. I took her home and kept an eye on her. The following Saturday (the 9th), it started to leak out. Quite a lot, actually, getting all over her bed and shirt, so I put her in the bathtub to let the rest seep out and clean her off. Krys was off in Pennsylvania dealing with what turned out to be an overblown medical emergency with her mother, so dealing with Mia by myself was oodles of fun. I got her out of the bath and noticed that protruding through one of the open wounds in her back was what looked like a bubble of pus. Well, that was what I was supposed to be looking for, so off we went to the ER once again. After they ran tests, the determined that it wasn't exactly pus, but subcutaneous fat, which often sticks out through wounds. Had I known that, I probably wouldn't have taken her to the hospital, but it was good I did, because they also determined that she had a staph infection. Which meant ... more surgery!

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.
So I guess we caught it early, which was nice, but it still meant they had to open her up again. So on Saturday evening, they operated on her again, and this time, they left her back open. They put what I assume was a plastic sheath right beneath the skin and placed a vacuum beneath that to clean her out, but they still left the skin open, and it was one of the most horrible things I've ever seen. They left her open until Tuesday, when they closed her back up. She was able to leave the hospital on Friday, the 15th, and she hasn't had to go back since. Huzzah!

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.
We've been treating that for a few weeks and it looks much better, but we're hoping now that she's switched antibiotics, it will go away. We shall see.

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.
She wasn't able to go in the pool because of her PICC line, but I hope she can go in this week (the PT was getting her pool redone, but it should be finished). She really digs the pool.

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!