He needs it. I get it. J's oral intake isn't enough to sustain him. Between the texture aversions, pickiness, food allergies and just plain general disinterest in food, he's not gaining enough weight. This is where the g-tube comes in.
We got the tube placed when J was 18 months old. Jackson is hooked up to the pump every night to (fingers crossed) get 500 ml of formula. Ever since the powers that be at the hospital and VNA decided that the AMT mini was a "much better option" (read: cheaper) than the MIC-key button, my life has been all kinds of hell. I wonder if there was parent input into this decision? The nurse who did the inital swap between the MIC-key and AMT, extolled the virtues of the AMT like it was a shiny new Chevrolet. "Ooooo, look! The balloon is apple shaped and not round like that nasty old MIC-key."
Imagine stripping a bed (and child) up to three times a night. Imagine all that laundry and lack of sleep, which makes all that laundry so much more fun. Also imagine, a whiney, sleepy child, who has been dragged out of bed to be stripped, redressed, retubed. And, even without the disconnect, imagine how much a tubed kiddo can pee, so even with night diapers and diaper cover, the bed still needs to be stripped at least once per day.
Almost every night since we got the new, amazing, waaay better new button, Jackson has been unhooked from the pump multiple times a night...which means the bed gets fed more than Jackson. As far as I can tell, the bed's weight is right on target.
And then there are those who mean well (I hope), but just don't get it:
"Oh, if he gets hungry enough, he'll eat on his own."
"Gee, I wish I had to tube to feed me, ha, ha, ha."
"He really doesn't just grab food off the table and eat it? He must be so hungry?"
"Oh my gosh and golly, I know just what you are going through, I can't get my son to eat broccoli for anything." Riiiiight.
"Can't he just have a teeny, tiny bit of ice cream? All the other kids are." (Sure, if you want to administer the Epi and call 911, go for it.)
So, yes, I'm going to talk to GI and the VNA. Maybe there's some magical step I'm missing, even though last night I pinned that tube to J's jammies within an inch of it's life and it was STILL unhooked this morning.
I want my MIC-key back.
*end scene*
2 comments:
Ugh. That sounds awful! Why did they change it if the other system was working out? I know you said it's cheaper, but isn't it EVEN cheaper to leave the old system in place and not get a new one? Or is using it an ongoing cost?
Whatever it is, hope the issue is resolved soon.
Thanks! It's been a nightmare. I think I'm going to call the company and see what they have to say. It's an ongoing cost because we change the button every few months and we use 10 extensions a month plus 30 bags. All are now from the new company.
Post a Comment