So maybe it's not weekly but it sure as hell is starting to feel like it.
Makily's button came out AGAIN.
I don't even get surprised anymore.
This time it was even more of a mess because we just had it sized and she went down to an 18fr.
Of course the ONLY spare I had was a 20 fr because that was what she had been in.
Insurance paid for the 18fr early because it was sized down.
So I had no spare.
BANG HEAD AGAINST WALL NOW.
So I go through my stash of buttons, I don't even have a "holy yet sterilized" 18 fr.
We decide in our panic to try and put the 20 fr BRAND NEW button that we had in.
It was BRAND NEW out of the package....remember that.
I take out the button our of the package, and as always I test the balloon.
Why do I test a balloon on a BRAND new button you might ask?
Because I don't trust the suckers.
Would you believe that this button RIGHT out of the package HAD A HOLE IN THE BALLOON?
If I didn't see it for myself, I wouldn't believe it.
So I go back through my stash and I do find ONE button that is a 20 fr that the balloon is actually still good on.
Allen being the awesome Daddy he is decides he will try to put this one in.
(usually I do all the button changing around here and he assists, I was proud of him that he volunteered to do it). I even warned him that this was a size up from what was in her tummy and he still said he would do it.
Well he tried and it was too big, would not go in.
My poor Makily. :-(
We gave up and just put back in the holy 18fr and taped it in her tummy.
Nice.
Obviously Makily can't go to school with a taped button in her tummy so she had to stay home yesterday.
Allen called Kendall Clark and expressed his disgust with our ongoing problem (again I was so proud because usually I am the one b*tching.....me b*tch?.....never.....LOLOL). They apologized again and they are overnighting a new one to us. I should get it today. That means that Makily is missing school again today because of this. This is the second time now that she has had to miss two days of school because of all these stupid button fiasco's.
I am calling AMT today. Someone that works for them actually suggested me calling them on one of my other blog entries. I figure what can we possibly lose in at least trying this brand of button. God knows if the balloons hold up better then it will be worth whatever amount we have to spend on the thing.
I am still not desperate enough to try that BARD button with the long obturator thingie.
Hopefully we won't have to resort to that.
Tuesday, February 24, 2009
Our weekly occurance...
Posted by Patyrish at 2/24/2009 08:31:00 AM
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10 comments:
I have nightmares because of your button stories. I can't believe we have yet to have a problem in two years. I have been preparing myself for the day such instance happens. I can't imagine such a situation. It is truly unbelievable. Maybe a new brand is the answer.
Maybe it's too big?
My son is 11 and he has always used a 14fr 1.2 cm mickey, and we've never, had issues like this.
Poor girlie.
Jen, thanks honey. We seem to be in the minority with this. I don't know of anyone else that has the constant button popping issues like we do. I was told by gastro that kendall clark recently had a REALLY bad batch of buttons and so I think we have just been REALLY unlucky and gotten them EACH TIME. That and Makily is just abnormally abnormal? LOL
DESJ,
We just had it sized less than a month ago and the gastro went DOWN to the 18fr. She was in a 20. he did say that a 20 was LARGE for a kid her size. We ended up with such a large button to begin with because of all the constant leaking and stoma issues. This has really been a problem for Makily since she was about three or four months old after her Nissen/pyloroplasty/G tube revision surgery. It was like a month later that we started with this problem. No one can explain why.
I know the BARD button is horrible looking but I have to tell you, when we made the switch from the Mickey to the BARD- it NEVER came out again. I was so mad at myself for not doing it sooner. Luke's button was coming out at least 3 times a month, sometimes more. And his started after the stupid Nissen Fundoplication surgery too- it was fine for 6 months before that! Finally after 16 months of that crap, we switched to the BARD button. He had the same BARD button for the next 2 years until he was able to take all his nutrients by mouth. For us, it was such a relief. You know how hard it is to get help for your own child with this issue, now imagine how hard it was to get help for a FOSTER kid with this issue! He was on state medicaid and it took at least 15 phone calls to various doctors, specialists, social workers, GAL's, supervisors and medicaid ass monkeys EVERY. SINGLE. TIME. he needed a new Mickey. It gives me the shakes just remembering it.
So don't discount the BARD totally. It's ugly and sometimes it leaks a little around the edges but it was a lifesaver for us.
crap man. Total crap.
Im sorry to be out of the loop on this, but would you mind telling me why its so important to rush and get a new button in so quickly? I dont know this stuff.
Once upon a time, we considered tube feeding Katy, but we were lucky enough to get her to eat at last. What a hassle, trish.
Michele,
Makily's stoma (the hole the button goes into) closes up quickly. The longer the button or tube is out.....the more it closes.
She has had instances where we have had to have it dilated. They LITERALLY take metal rods and cram them into the stoma to stretch it out to it's normal size. THAT IS A NIGHTMARE. In fact the last time they did that to her I just about punched the doctor. She gets the most panicked look of terror on her face and cries so hard.
Also for some reason when we have ANY issue with Makily's g tube site, it can start leaking...I can manage the leaking to a certain point...once it's out of control though IT'S BAD and the skin on her tummy gets so broken down it looks like a chemical burn. When she was nine months old it was so bad, the leaking wouldnt stop and so they had to let it heal, put an NJ tube in and then re-do the button three months later.
An NJ tube is a headache and a half.
I tried to email you about a month ago. I live in the UK and have a little girl with a button. She had the Nisses and Gastrostomy ops in Oct 2005 and we had no problems for 3 years but since last Nov we are going through a button every 2 weeks. It so frustrating and I can totally relate to the taping the button down thing. We were recently advised to put less water in the balloon and the latest button has lasted for 2 weeks and 3 days!!! We used to have 5ml in it and now only have 3ml. Don't know if you have tried this or not but thought I'd just mention it. we met our surgeon today to discuss this and if this continues he has advised we go for a Peg.
I dont think you are as minority as you think...I worked with a boy who had THIS SAME isssue and also, I KNOW a couple of parents that have this SAME ISSUE...its time for the Kindall Clark to go back to the drawing board...I know alot of kids do fine, but this is not the only horror story I have heard...the BARD does look horrible, but maybe it will be a more long term solution...I dont know obviously you know more about this than I do, but geeze...somethings gotta give...
Hi!
Just to let you know, we were never offered anything but the BARD. I like how it lays flat and we have never had to have it replaced. Its been in since September.
Then again, I wonder sometime if they should have named it "Murphy Syndrome" because what can go wrong seems to at one time or another.
just fyi, we have had good luck with josie's bard. albeit she was sedated when they originially put it in. we were offered to switch to the mic-key but after seeing your experiences my answer is a HUGE NO! hope you find a good solution soon. so sorry that you are having ongoing problems. rachel
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