The Daughter Chronicles

Monday, January 16, 2012

Mia's g-tube is fully functional!

Yes, this past Friday, Mia went down to Phoenix Children's Hospital and the surgeon sliced her open, placed a valve that leads directly to her stomach, and called it a day! Then we attached a tube, and the fun feeding began!

Her surgery went perfectly well. She was in there less than an hour, but of course she had to stay overnight in the hospital. They gave her Pedialyte during the night, just to make sure everything was going well and to keep her hydrated, then in the morning they had a dilemma. No one had spoken to the nurses about what she was allowed to have. I spent Friday with her, and then Krys went in early in the morning (it was quite difficult convincing Krys she didn't need to spend the night in the hospital, but Mia didn't care if she was there or not), so I missed a lot of this. Krys said that a dietitian showed up and determined how much she would need based on her weight and age, but there was also some discussion about whether she could actually eat solid foods or not. I'm a bit baffled why her gastroenterologist was not looped in on this; I have to call her tomorrow, and I'm not certain if it was my job to get something in place before this. We'll see.

We also had to wait for a pump for the tube. We have done this before, back when she first got out of the hospital and had a tube going to her stomach through her nose, but we assumed we would be getting a fancier model almost nine years later. No one had actually ordered anything for her, which was somewhat vexing. She wanted to leave, obviously, and after a while, she was perfectly able to leave, but we didn't have her equipment. I'm not sure if any of you have ever been admitted to the hospital, but it's frankly astonishing how hard it is to leave the hospital once you've been admitted. We knew this from three years ago, when it took something like 24 hours to get her out after her hip surgery, and this time we thought we were ready. Well, we got her out a bit sooner, but it still dragged on because the pump took a while to arrive, and then we had to wait for a representative of the company that provided it to show us how to work it. It turned out we didn't need to wait; it's fairly easy to operate. Sigh.

So Mia finally got out around six o'clock at night, after sitting in her bed for over 24 hours. She wasn't happy, but at least she was home. Since she's come home she's had some issues - she had surgery, after all, so she's very sensitive and in some pain. We're hoping she can go back to school tomorrow - she seems okay for long stretches, and we think that ibuprofen is sufficient to deal with her pain. Yesterday we gave her some stuff through the tube - we have our high-calorie, high-fiber drink that she used to actually, you know, drink - and she was fine with that, but this morning she threw up a bit at breakfast. Later we did give her some more, and she was fine with that, so I assume there will be an adjustment period. As her surgeon said, the good thing about Mia is that she can still eat regularly, so we can gradually get her used to it and not fear that she's going to starve. I'm calling the doctor tomorrow to get some advice on a plan of action.

Feeding her is remarkably easy - we just put the tube in, hook it up to the pump, and set the speed for the feeding. We slowed it down today after she threw up, and she had no problem with it. Giving her medication through the tube is easy, too, which is nice. She hasn't messed with it yet, although she has told us a few times that she wants it "off." There's some dried blood around it that we've wiped off a couple of times, and I guess for the next couple of weeks there's a danger of some oozing (blood and stomach acid, as far as I know), but that's normal and as long as you clean it off, it shouldn't be a problem. She also has an incision in her belly button because they put a tube through there during the surgery to keep the area clean. Krys has had an incision in her navel before and she says that's what's probably hurting Mia the most. Not fun!

We're going to try to do all her feeding at home, mainly because if she has the option at school, she will soon learn to take it instead of actually eating. We'll see if we have the time to get everything in her at home - we'd like to do the entire thing at night, but then we have to worry about reflux and vomiting and whatnot - but that's something we'll worry about later. Right now, we're just trying to get some into her, get her used to it, and get her healed. It's never fun to get your belly cut open!

Anyway, I have pictures!

Here's Mia in her hospital bed. She doesn't, as you can tell, look happy:

Here's the valve. Note the incision on her belly button.

Here's the tube attached to the valve:

So it's a brave new world here in the Burgas household. Should be groovy. I'll keep everyone posted!

Sunday, January 01, 2012

2011 wasn't very good; maybe 2012 will be better!

I figured out that Mia had four good months this past year. The first four were terrible - after gaining some weight at the end of 2010, she simply decided to stop eating a few days into the new year, and this lasted through April. Then she went to the rehab clinic in Pennsylvania, and she got better. Her eating got better, but then in August her muscle tone started to get worse and worse, to the point where she can't stand up anymore even though in July she was walking (with help, of course, but she knew what to do and her legs were straight). Even though her tone was getting worse, she was still eating, until November, when she stopped eating again. So she wasn't able to stretch her legs AND she was losing weight. Fun times!

So 2011 wasn't that good. We're taking steps to remedy it in 2012. On 13 January she's getting a G-tube installed in her stomach to help with her eating issues. We've basically had enough of fighting her, and the tube will alleviate some of that. Her gastroenterologist told us that we could still feed her by mouth and this would just pick up the slack, so we'll try that. The frustrating thing is that there's no reason why she can't eat - she just doesn't. We really hope that we can get her weight up to something respectable, because we think it affects so much else in her life - she's so tired a lot, and she doesn't work at therapy as well as she could, and we think it's because she has very little energy. Stay tuned - I'll be writing more about the G-tube soon enough.

Meanwhile, on 20 January she'll be getting a new splint for her hand. This will help keep her wrist straight so that she doesn't develop arthritis in her wrist. Fun! The orthotic guy who has designed all her splints thinks he can make a very good one, something that goes past her elbow so, if we want to, we can lock her elbow wherever we want it. This is handy because when she sits in her wheelchair, she still tries to lean to the left. If we can put her splint on and lock her elbow at a 90-degree angle, she'll be forced to sit up. She eats much better when she sits up, too. It will also help with moving her chair - we can lock it so that her arm can't bend past a certain point, and then she can use it to move the left wheel of her chair. We hope.

We're still thinking about options for her high tone. She's doing pretty well on her baclofen, which relaxes her muscles, but it's not relaxing them as much as we'd like. We're probably going to have to surgically remove some of her muscles in her legs, because they're all pulling too hard and removing one will ease the pull. Plus, we're probably going to have to put her legs (or at least her left leg) in a big splint that will keep it straight. When we pick up her wrist splint on the 20th, I'm going to talk to the orthotic guy about that. We'll need something that we can put her in when her legs are bent and that will push her legs straight. It's extremely difficult right now to stretch her out, believe you me. Having a splint to help would be very nice.

So we're trying different things. If she doesn't get her legs straight fairly soon, she'll suffer a contracture, which means the muscle will be permanently short and it will be impossible for her to straighten her leg. Nobody wants that! Plus, we don't want her to, you know, starve herself to death. So we're hoping we start 2012 on a better note than these past few months, as they haven't been fun. We'd love to have a healthy and strong daughter as the year progresses!