Yes, I'm back with more of Mia's weight problems, unfortunately
I have a nice post to write about Norah and her accomplishments, but I need to film her doing stuff, so that will have to wait a bit. In the meantime, Mia is still having weight issues, but now they're even worse. Good times!
I mentioned last time that she weighed 47.7 pounds fully clothed, which meant she had lost some weight from January, when she weighed 47.2 pounds with only a hospital gown on. Well, last week I got her weighed with her clothes on ... and she weighed 45.8 pounds. Yeah, that wasn't good. I told the nurse to put us on a waiting list for the doctor in case she had a cancellation, because the first appointment I could get with her wad 14 April, and I certainly didn't want to wait that long. Yesterday they called me and said she had an opening, so I hustled on over.
This time they took all her clothes off ... and she weighed 43.8 pounds (plus she grew two inches, so she's up to 50 now). So since January she's lost 3.6 pounds, which is really, really terrible. She's getting worse, too - we can barely get her to drink one Kid Essentials a day, which is only 350 calories, and often she doesn't even drink all of that. The people at school are having the same problems. Mia has entrenched, and nothing at all gets her to drink. The doctor was just as concerned as we were, and we both agreed it was probably time to stick a g-tube in her ... a "gastric feeding tube," for the laymen. Yay!
A g-tube means surgery - she needs to go in, the surgeon makes an incision into her stomach, and they place a valve on her skin through which we feed the tube into her stomach. The valve looks like the thing on a kiddie pool toy, with a plastic cap that snaps into place over the aperture. She doesn't need the tube in all the time, just when we want to get fluids into her. Her doctor is very worried about her weight loss, so I made an appointment with a pediatric surgeon ... but it's not until 23 March, so I have to wait a week-and-a-half to set up the surgery, which I hope can be done soon after that initial consultation.
The biggest fear I've had about a g-tube is that Mia will become dependent on it and give up eating solid foods altogether. That's still a concern, but I'd rather she not starve herself to death, so it's kind of gone by the boards for now. We can send her to school and they can feed her normally, and when she gets home we can try to get as much in as possible. If that doesn't work (as it hasn't been for over a month), we can hook her up before she goes to bed and pump some calories into her. My concern is that she'll bother it a lot, and she could conceivable rip it out, although it would hurt like hell. Given Mia's obstinacy, I wouldn't put it past her. I'm sure she'll get used to it, but until she does, we'll have to be careful.
Krys is worried because it's surgery (the procedure takes 5-10 minutes, but she'll still be anesthetized, which is always a bit scary), but we are pretty much out of options. Her speech therapist tells us that there are aggressive inpatient behavioral therapies that we can try, but none are in this area, so she and I would have to go to another part of the country for a month or two while Mia lives in a clinic and I go insane from boredom. Plus, who knows if it would work or if we'd be able to continue it after she got out. Plus, who knows how long it takes to get into one of those places, and we don't have a lot of time. Maybe we'll try it later in her life if she's still having problems, but right now, her more pressing need is nutrition, stat!
So I'm sure in two or three weeks she'll have more surgery and yet another thing implanted in her body. She already claims she doesn't want to go to the hospital, to which I reply, "Well, you've had every opportunity to avoid it." Naturally, this fazes her not one bit.
Next week is Spring Break, so I can work on her a lot, but I doubt if it will do much to help the problem. I just hope I can keep her from losing more weight in the next 10 days or so before we see the doctor. it's the challenge!
Boy, I wish I had good news. Norah's doing well! How's that?
I mentioned last time that she weighed 47.7 pounds fully clothed, which meant she had lost some weight from January, when she weighed 47.2 pounds with only a hospital gown on. Well, last week I got her weighed with her clothes on ... and she weighed 45.8 pounds. Yeah, that wasn't good. I told the nurse to put us on a waiting list for the doctor in case she had a cancellation, because the first appointment I could get with her wad 14 April, and I certainly didn't want to wait that long. Yesterday they called me and said she had an opening, so I hustled on over.
This time they took all her clothes off ... and she weighed 43.8 pounds (plus she grew two inches, so she's up to 50 now). So since January she's lost 3.6 pounds, which is really, really terrible. She's getting worse, too - we can barely get her to drink one Kid Essentials a day, which is only 350 calories, and often she doesn't even drink all of that. The people at school are having the same problems. Mia has entrenched, and nothing at all gets her to drink. The doctor was just as concerned as we were, and we both agreed it was probably time to stick a g-tube in her ... a "gastric feeding tube," for the laymen. Yay!
A g-tube means surgery - she needs to go in, the surgeon makes an incision into her stomach, and they place a valve on her skin through which we feed the tube into her stomach. The valve looks like the thing on a kiddie pool toy, with a plastic cap that snaps into place over the aperture. She doesn't need the tube in all the time, just when we want to get fluids into her. Her doctor is very worried about her weight loss, so I made an appointment with a pediatric surgeon ... but it's not until 23 March, so I have to wait a week-and-a-half to set up the surgery, which I hope can be done soon after that initial consultation.
The biggest fear I've had about a g-tube is that Mia will become dependent on it and give up eating solid foods altogether. That's still a concern, but I'd rather she not starve herself to death, so it's kind of gone by the boards for now. We can send her to school and they can feed her normally, and when she gets home we can try to get as much in as possible. If that doesn't work (as it hasn't been for over a month), we can hook her up before she goes to bed and pump some calories into her. My concern is that she'll bother it a lot, and she could conceivable rip it out, although it would hurt like hell. Given Mia's obstinacy, I wouldn't put it past her. I'm sure she'll get used to it, but until she does, we'll have to be careful.
Krys is worried because it's surgery (the procedure takes 5-10 minutes, but she'll still be anesthetized, which is always a bit scary), but we are pretty much out of options. Her speech therapist tells us that there are aggressive inpatient behavioral therapies that we can try, but none are in this area, so she and I would have to go to another part of the country for a month or two while Mia lives in a clinic and I go insane from boredom. Plus, who knows if it would work or if we'd be able to continue it after she got out. Plus, who knows how long it takes to get into one of those places, and we don't have a lot of time. Maybe we'll try it later in her life if she's still having problems, but right now, her more pressing need is nutrition, stat!
So I'm sure in two or three weeks she'll have more surgery and yet another thing implanted in her body. She already claims she doesn't want to go to the hospital, to which I reply, "Well, you've had every opportunity to avoid it." Naturally, this fazes her not one bit.
Next week is Spring Break, so I can work on her a lot, but I doubt if it will do much to help the problem. I just hope I can keep her from losing more weight in the next 10 days or so before we see the doctor. it's the challenge!
Boy, I wish I had good news. Norah's doing well! How's that?
posted by Greg at
4:35 PM
2 Comments:
I never know what to say except that I feel for you and your family. Yeah, better dependent on the g-tube that getting no nutrition at all.
By
Roger Owen Green, at 12/3/11 4:24 AM
Thank you, sir. Her speech therapist was here last night and we were STILL debating it! We're still going to get the g-tube, but we're also still looking into inpatient therapies, as even if we get her weight back up, her eating stubbornness just won't go away!
By
Greg, at 12/3/11 7:59 AM
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