On 26 January 2009, Mia had hip surgery. Boy, that wasn't any fun at all.
We first learned that she needed hip surgery back in the fall. Her horse therapist had been worried that she was going to develop scoliosis, so she suggested we go see an orthopedic surgeon. We made an appointment with a doctor who works at Phoenix Children's Hospital and took her in. He checked out her back and said the chances of her developing scoliosis were very slim, but he was concerned about her hips (so was her horse therapist, but not as much as she was worried about her back). He took an X-ray that day and confirmed it: her hips were pretty screwed up. Joy!
The problem was this: When she was in her accident, she was only seven months old. Therefore, her bones weren't completely grown and were still relatively soft. The accident caused very high muscle tone throughout her body (which means, if you're new around these parts, that her muscles are very stiff and don't move well), which in turned kept the leg bones from growing properly. The top of the leg bone is supposed to gradually turn into the pelvic socket, but hers didn't. Well, it did in the left leg (to a certain extent) but not in the right. So her left leg bone was in the socket, but the angle at which it entered the socket wasn't optimal, while her right leg bone was halfway out of the socket. The doctor said that she didn't need surgery right away, but he didn't want to wait too long, because the right leg was going to pop out sooner or later (probably sooner). So she needed more surgery! Yay!
Then began the frustrating process of getting the surgery scheduled. One would think that this wouldn't be a big deal, but it was. The doctor's nurse mentioned that she wasn't sure if she could get Mia in before March, because PCH (Phoenix Children's Hospital) was overwhelmed in the winter months with cases of kids with RSV
. I thought this was rather odd. Can't they quarantine part of the hospital so kids who need to go in for other reasons don't run a risk of contracting RSV? I guess not. So she wasn't sure when she could schedule Mia for surgery. She told us she'd let us know.
If you know anything about doctors, nurses, or hospitals, you know it's not that easy. November passed. December began. No news from the nurse about when her surgery was scheduled. On 18 December Mia got botox injections. We hadn't been giving them to her for a while, because throughout 2007, it seemed that it wasn't helping as much and when it wore off, she wasn't as stiff as she had been. So we wanted to see how she would do without botox. By the summer, she was getting stiffer, so we took her to her neurosurgeon to schedule more injections (he also suggested we go see the orthopedic surgeon to get her hips checked out). We wondered if she needed to wait until after surgery before getting the injections, but he said it would be fine to get them before. While we were at the hospital, I tried to find out when her surgery was, but I failed. I called the nurse a few times and heard nothing back. Finally, in December (the week of Christmas, I think), the hospital called and told me that Mia had to come in on 22 January for bloodwork. I asked when her surgery was, and that's how I found out it was on the 26th. God forbid the nurse call and tell me anything about it!
So we had a date. We knew she'd miss at least two weeks of school, unfortunately, but at least we now knew when those two (or more) weeks would be. The weekend before her bloodwork appointment, she got sick. Whenever she throws up, we have to watch her carefully because it could portend a shunt malfunction. It never has, but we still have to be aware of that. She got sick on Saturday, and on Sunday, she didn't throw up, but she was logy all day and we began to worry. Krys took her to the ER and they rehydrated her (she was desperately lacking in fluids) and gave her a CT scan. Her neurosurgeon took a look at the CT scans and said she should probably come in so her could check her out. Luckily, I got an appointment the same day as her bloodwork, so that was handy. By that time (Thursday) she had been fine fine three days, so I wasn't worried anymore, but it's always nice to get a doctor's opinion.
We went to the hospital for her bloodwork. When I got there, they wouldn't let Norah in. "RSV," said the attendant. No kids under 12 were allowed in. Now, it would have been nice if someone had told me that, as Krys could have stayed home with the other one while I took Mia. I told them that I didn't know about the restriction (yes, the nurse mentioned it, but as Mia's surgery was scheduled for that time, I figured there wasn't an issue) and that as Mia had surgery in a few days, I just couldn't leave. I told the door guard that she could take Mia back to get her bloodwork and I would stay outside with Norah. She didn't think that was funny, but I wasn't trying to be a dick, I was just pointing out that Mia needed to get her blood drawn and that I had a child who needed to stay with me. I also pointed out that Mia isn't 12 yet, but she said that Mia was the patient, so it was okay. I wanted to point out that Mia wasn't staying in the hospital that day, so it was just as bad for her to go in as it was Norah, but I didn't. Finally she gave me two masks and allowed us to go in. Neither child was happy to wear the mask, needless to say. Norah bawled for a while until she calmed down, but I had to get another mask because her first was covered with snot. Mia didn't cry, but she did try to pull it off at every opportunity. I had to hold her right hand the entire time, which made it hard to do anything else. So much fun! Finally they took her blood (as usual, I had to wait 45 minutes to get in so they could perform a procedure that takes, literally, less than a minute) and we were off to the neurosurgeon's! He told me that when you drain the fluid out of the brain, the brain eventually expands to fill the skull completely (I guess this happens to everyone, whether they have fluid or not). Mia's brain, he thinks, still has a few places into which it can expand, and those spots showed up on the CT scan, but it's nothing serious. Basically, her shunt is pretty much not working anymore, but she doesn't need it to work. He's just going to leave it in, because it's major surgery to take it out (it's between her skull and her brain, after all, and would mean cutting her head open again
), and as long as it doesn't get infected, she'll be fine. That was kind of weird, because I hadn't considered that she didn't need it anymore. But it's nice to know.
Then it was Monday, 26 January, and I had to take Mia to the hospital. Her surgery was scheduled for 7.30 in the morning, so I had to be at the hospital at 6. Yeah, that wasn't happening. I always try to get there when they say, but I don't kill myself, because they're always so slow. So I got there about 6.25, which I think is pretty good. The anesthesiologist told me that she was going to try to give Mia an epidural, because it works much better than a standard narcotic given through IV. Some kids don't take the epidural terribly well, so she said they might have to give her the IV, but she was hoping she wouldn't have to. Luckily, Mia had no trouble with the epidural at all, so that was handy. She went into surgery about on time (ten minutes late, I think) and then I had nothing to do but wait. I had plenty of reading material, though! The nurse came out periodically to update me on her progress (all was well) and about 11.15, the doctor came out and said she was all done. He was very please with how it turned out - nothing went wrong at all. She was, of course, still doped up, and he said they would leave the epidural in for at least 36 hours (it was more like 48, as it turned out). But she was done with the really hard part, at least.
She stayed in the recovery room for many hours, because they couldn't find a room for her. That confounded RSV was filling up the rooms (and, obviously, they couldn't put her in a room with a kid who had it)! It didn't really matter, as she was out for most of the day. I sat next to her, got up, wandered around, went to the bathroom, sat with her for a while, ate some food, wandered around, sat with her for a while ... and so on. We decided that Krys would spend the nights with her while I would take the days. That didn't work out too well, as we'll see, but that was the original plan. We didn't know how long she would be in the hospital - they wouldn't send her home until she could eat without throwing up, and they also wanted to make sure she was fine without the epidural. So we were hoping for Wednesday, as we didn't think they were taking the epidural out until at least Tuesday night. At some point during Monday, the "pain management" team showed up. The doctor said he wouldn't be surprised if she spent the entire week in the hospital - surgeons, he said, are often overly optimistic about when kids can go home. We didn't really care - we wanted her home, of course, but not if she was going to be miserable.
Krys showed up around 6.30 in the evening. As she was with Norah, we had to meet at the entrance to the hospital and switch the kid. I took Norah home and she went back to Mia. Mia was still in the recovery room, but she got an actual room soon after Krys arrived. I spoke to her later, and she said Mia wasn't terribly happy. She was asking Mommy to hug her constantly and would simply grab Krys and refuse to let go. She didn't want to sleep (not surprisingly, as she had been unconscious all day) and she wanted to sit on Mommy. She was, of course, in no condition to do this. She has braces on her legs to keep them straight, bandages all over them, and a large foam block in between her legs to keep them slightly abducted. It does not look comfortable at all, I'll tell you that much:
She's also not allowed to sit up for a while, which also annoys the heck out of her. The bones in her hip need to heal, after all, and can't take the stress of a torso pushing down on them. We've been keeping her torso at about a 35-degree angle, and she's not happy about it. So sitting with "Mama" is obviously not going to happen anytime soon. Krys, of course, is extremely upset about this, at no time more so than that first night, when Mia was still feeling crappy because of what she'd been through. So Krys's night wasn't all that groovy. I slept well, of course!
The next day I called her early, as I was going to drive to the hospital after Norah's swimming lesson at 10.30. She told me that she wasn't spending the night in the hospital on Tuesday because she got very little sleep, not only because of the annoying child next to her but because she had to sleep on a reclining chair, and that's no fun. So she said she'd spend the day and I could come and relieve her at night, and that's how we'd do things until Mia came home. No problem, says I. When I got to the hospital around 5.30 at night, Krys told me Mia had a crappy day, as she continued to whine about hugging and/or sitting with Mommy. Of course, the minute I got there, she was fine. She had started eating goldfish crackers through the course of the day, but she still wasn't drinking. They had her on an IV for fluids, and we figured that was why she wasn't drinking, but we were also surprised because we figured her throat was really dry. Krys had brushed her teeth, but her mouth was still pretty yucky from eating only dry goldfish crackers all day. I gave her some more goldfish crackers and tried to get her to drink, with no success. But she slept fine for me, and sleeping in the chair wasn't too awful. It wasn't fun, of course, but I managed.
One of the big problems with the room was Mia's roommate. I never actually saw him, but he was less than a year old, and apparently his hips had been dislocated at birth and he was getting them fixed. It wasn't that he was that bad, but as he was so young, they couldn't give him any good solid drugs for his pain, so he would often wake up screaming, which of course woke Mia up and made her cry. This was, according to Krys, particularly bad on Monday night, but on Tuesday night the kid still woke up quite often. Luckily, Mia seemed to have grown used to it, so even though she woke up, she quickly went back to sleep. I felt bad for the kid, but I wondered why they would pair up a baby who can't get drugs with an older kid who could. Put babies together - they can have a screaming contest! The kid didn't bother me too much, but it was a bit annoying.
She started drinking a tiny bit on Wednesday morning, and she was still eating goldfish crackers and Froot Loops, so I was happy with her progress. At about 11.30 in the morning on Wednesday, they shut down her epidural, so we had to watch her for signs of pain over the next few hours. That would be important, because if the pain was still too much to bear, they'd have to turn the epidural back on (they left it in for just such a contingency). They were giving her acetaminophen with codeine, as a painkiller, and as the afternoon wore on, that seemed to work fairly well. I was convinced that she could leave, if not on Wednesday night, at least on Thursday morning. More fool me, I guess.
Krys showed up on Wednesday night, and Mia took a turn for the worse. Of course, "worse" simply means she started whining for Mommy again. As I've often pointed out, Krys is the "exotic parent," meaning she's away most of the time at work, so the kids behave less well around her because they're always clamoring for her attention. So Wednesday night and Thursday weren't great for her. Again, I thought she could come home on Thursday, but they decided she needed some time. Finally, late in the afternoon, they said she could go home. By that time, of course, it was getting late, and we decided that she could stay one more night. We weren't all that prepared for her at home, and it would have been extremely late by the time she got home, so we figured it would be fine for her to go home on Friday morning. I think it was just so Krys could get another night in the bed by herself, but she wasn't admitting that!
She had a good night on Friday. They moved her into a different room for some reason, and her roommate was a ten-year-old girl, so she was much better behaved than Mia's previous roomie. In the morning the surgeon came in and asked how she was doing, and then said she was ready to go! Krys stayed at home, because as she couldn't bring Norah in, there was no reason for her to be there. They had ordered a special wheelchair for her, because hers didn't help keep her legs straight, as they needed to be. When it arrived on Wednesday, I had practiced moving her from the bed to the chair, which was no fun whatsoever. It's very hard to keep her from folding up, which she can't do, and she does weigh forty pounds, after all. I couldn't put my arms around her hips, of course, because that was kind of a sensitive area. So I had to slide my arm completely under her leg at about the knees and put my other arm in the middle of her back. When I lift her, the biggest problem is keeping her butt up, because we don't want it falling. I've gotten better at it, but it's still no fun and remains one of the most stressful parts of her day. But I got her in the chair on Friday morning, and we were off! I got out to the car with the help of one of the volunteers who are everywhere at the hospital, and I managed to get her into the back seat. I had taken the car seat out earlier, because it would be difficult to fit her in it, and lowered the back of the seat as far as possible. It was still at a higher angle than they wanted, but I spoke with one of the doctors and she said for the ride home, sitting further up than was optimal wasn't a big deal. The ride home is only 20-25 minutes and wouldn't put too much stress on her hips. The biggest problem with putting her in a wider seat is that she often gets lazy and starts listing to her left. The car seat prevents that. The minute I got her in the car, she started to tilt. But we got home without incident.
Here's what the doctor actually did: He cut the leg bone at the spot where it turns to go into the hip socket. He told us that the angle at which it enters the pelvic bone ought to be about 135 degrees. Hers was closer to 160 degrees, meaning her leg bone was almost straight. That's why the right side was almost popping out. So he needed to cut the bone and reposition the part that fits in the socket. He did that on both sides
, hence her severe pain (he's cutting bone, people!). On the right side, he needed to chisel away some bone from elsewhere on her pelvis and add it to the socket to make it more concave so that the right leg bone wouldn't pop out again. The left side was apparently okay, so he didn't need to do it there. Then, as an added bonus, he cut one of the tendons in her groin. Why would he do this, you might ask? Well, as I mentioned above, she has very high muscle tone. This probably contributed to the hip problem beyond just keeping the bones from growing the correct way. One of the problems she has with walking is that her adducter muscles in her legs - the ones that pull your legs inward - are too strong, and so she scissors her legs when she walks. She's getting better at not doing it, but it's still a struggle for her to overcome the muscles that are pulling on her leg. So the doctor snipped the Sartorius muscle
, which not only pulls the leg inward but also rotates it. What this means is that she'll have one less muscle pulling on her leg, and even if her leg does drift toward midline, it will stay straight instead of her foot pointing inward. As there are still five muscles working her leg, it won't cause any problems, and we hope it will alleviate the pull on her legs a bit. Her PT said they might even snip another one down the line if this doesn't work well enough, but obviously they didn't want to go too far right now. I didn't snag her X-rays, but this is a fairly general before-and-after drawing of her hips (excuse my lack of artistic prowess):
(Those are plates and pins in the "after" picture. I'm not sure where the pins really are, but the plates are placed correctly, if I recall. This is why she's not wearing a cast from her waist down, which would have made her experience a thousand times worse.)
So she was home. The biggest thing that freaked us out, beside moving her from the chair to the bed and vice versa, was changing her. We aren't allowed to take anything off her legs, so we have to reach between the foam block and her crotch to get the diaper through. In the hospital, they had a catheter in her, but once they took that out, it was clearly a two-person job to change her. They would roll her back and forth and get it under her that way, and we do that when there are two of us at home, but it's still difficult. When I'm home alone, it's a bit more of a challenge. What I've done is undo her diaper (when she's in bed) and lift her sideways to get it out from under her. Then I lay the new diaper next to her and lift her onto it. She doesn't like it, but it gets the job done. When she's in her chair, I simply undo the diaper and lift her off the chair and place her on the new diaper in the bed. It's absolutely no fun changing her diaper, but the "good" news is that she doesn't appear to have any interest in a bowel movement, so we haven't had to contend with that yet.
Then, of course, there's the fact that she can't do anything. She was limited before, but now she's really stuck. She's watching a lot of television, naturally. She has a few toys that she can play with while lying down, but she gets bored with them pretty quickly. She's obsessed even more than usual with The Wiggles
, so we've been watching a lot of those DVDs. She also sleeps a lot, although not as much as I'd like! She has been taking good naps but still getting up relatively early (seven in the morning or so). She's more bored than anything, which is a shame. Part of the problem, of course, is that she can't read, so she's stuck with the television (of course, if she could read she wouldn't have brain damage and if she didn't have brain damage she probably wouldn't have bad hips, but that's neither here nor there). She's also not eating or drinking as much as we'd like. She'll eat a little bit, but I think eating while almost flat on her back annoys her (as it would anyone), so she gives up quickly. She does eat consistently, though, even if it's only a few nuts or Froot Loops or popcorn. She's drinking more each day, which is also nice, but still not as much as we'd like. As for her pain - she seems to be doing okay with it. They gave us a prescription for the acetominophen with codeine, and that helps, but we've also been giving her ibuprofen on top of it (which the doctor said was fine). The prescription calls for us to give it every 3-4 hours, but even when she first got home, she didn't seem to need it that often. Today, for instance, I gave it to her when she woke up (around 7.30), and then I gave her Children's Motrin at about 11. It's about noon as I type this, and she's fine. I'm going to put her down for a nap soon, and I probably won't give her the prescription meds when I do so. We probably won't give it to her until it's close to bedtime, and we'll probably give her the ibuprofen in the afternoon sometime, if she needs it. The codeine, obviously, helps her sleep, so that's why we give it to her at bedtime. But her pain seems minimal, although it flares up at time, like when we move her around a lot (as I mentioned above).
Her therapists have all been to see her. Her speech therapist, obviously, can still work with her rather well, and even her OT can do some stuff with her because she's all about manual dexterity! But her PT has been by, too, so he can check up on her and make sure we're doing everything we can to make her comfortable. He also knows a ton, so he's been checking her bandages and telling us how to recognize if something's wrong. Her follow-up appointment isn't until Wednesday the 11th, which we thought somewhat strange. When I spoke to the doctor's nurse about our fears of infection (she has stiched-up wounds in her groin, after all, and urine getting in there would be nasty), she said that if we thought her bandages needed to be changed, we could do it ourselves. I didn't say, "That's not going to happen," but if we notice anything askew about her bandages, we're calling the doctor. I'm not messing with them!
We hope that she can go back to school on Monday. The doctor never said she couldn't go, implying that it was up to her pain and whether it would allow her to. I think her pain will be fine, but we're worried about her coming home on the bus. The bus, obviously, is a bit bumpier than your usual vehicle, and we don't want to mess her up just when she's healing. I called the doctor again just to check to make sure that she'd be fine going to school, but I think she will be. They know how to take care of her, so that's not that big a deal, and the only question I have is if she's okay taking the bus. If she has to miss a little bit more school before we see the doctor on the 11th, that's fine, but, as I mentioned, she's pretty bored, so going back to school would help her out with that.
According to the doctor, she won't be fully healed for two months, and I think he said he's going to leave the stitches in for six months (I could be wrong about that; I'm going to ask him next week). She obviously can't do any physical therapy until at least the end of March, which is a shame, because she probably won't get to ride her horses until October or November (whenever the weather gets cool again). However, she does love the pool, so if she has to go straight into the water (depending on when the weather gets too hot for the horses and whether she's cleared for therapy in April or May), she won't mind. When she does get back to therapy, we hope this will help her walk better. Her biggest problem has always been stability (well, that and balance), and this should make her hips more stable. It should also make it less painful to walk, as well as keep her legs from scissoring. Recently she has been walking much better, and we're hoping that it continues when she doesn't have to strain against her own body so much. That would be nice.
So that's the latest on Mia's health problems. She's doing very well, and the operation was a big success. At the very least, we won't have to worry about her leg bone popping out of the hip. So there's that. And this will, we hope, have a positive impact on our continuing efforts to get her to walk relatively independently. That would be nice.
(Please forgive the pictures. Our digital camera broke I used a disposable one. Our house really isn't that dark!)