Leaky Bard!

Ainsley's Mom · #1 06-28-2007, 07:03 PM

That sounds like a swear word doesn't it? Well in a way it is. Ha, ha. OK you guys said you'd give me advice once we got the g-tube. How do you keep the extention from unplugging? I've feed the bed twice today! The hospital showed me to use slit gauze, tape it together and tape to the slit-gauze. PLEASE tell me there's an easier way? (And don't be tellin' me about the Mickey! ha, ha. We can't get one for at least 3 months.)

Thanks,
Susan

P.S. To clarify I'm referring to the 90. extension. We run her continous at night (55 per hr) and 85cc boluses every 1 1/2-2 hours at a rate of 230 (over about 20 minutes).

suzanne2545 · #2 06-28-2007, 07:13 PM

She's not on continuous, right? We used the extension all of once and then stopped. Too much hassle. The only reason we were told to use it was that pinching or crimping the actual tube would wear it out faster- that was a risk we were willing to take after putting that silly extension on.

Suzanne

aydens mom · #3 06-28-2007, 07:19 PM

Ayden has a bard for about2 years now(mickey kept breaking every 3 weeks)just use lots of tape !!!

Lifeisgood · #4 06-29-2007, 07:03 AM

So, I have to ask, why do you have to wait 3 months for a mickey? Is it because it is new g-tube? I am thinking that we need to switch Harlie's g-tube out (she's got a peg now and everytime we go to our local hospital they always say they've never seen one before). I was thinking we should go with a mickey. Based on the posts - I should definitely avoid a bards considering Harlie is on continuous feeds all the time, huh?

Thanks for the info and good luck. Sorry I don't have any help for you!
Christy

Ainsley's Mom · #5 06-29-2007, 12:16 PM

Christy,
I think most people only get a PEG temporarily and move to a button when possible. Children's in Seattle only places a Bard surgically. After 3 months you can have it replaced with a Mickey if you're having problems (failure of the inner valve, etc.). I believe their theory is that not changing out the buttons allows for tighter healing of the stoma and therefore less leaking down the road. These are the pros and cons of each type of button.

Bard- Can't be pulled out. They've seen only 2 cases where an older kid was able to pull and pull and get the thing out. It's very flush to the tummy and squishy so pretty comfortable to lay on. Requires going in to the clinic if it needs to be replaced which they will not even do until after 3 months. Extension will disconnect if pulled. Good because it won't pull the button out. Bad because it comes out all the time.

Mickey- Can be replaced by the parent at home if you have problems with your buttons (leaking, plugging etc.) Extension locks in place. I presume you'd have less problems with it disconnecting but if they pull really hard I suppose it's possible it could come out. But since you can replace it yourself, no problem, right?

Help me out here gals, is there anything I'm forgetting?

Thanks,
Susan

suzanne2545 · #6 06-29-2007, 04:07 PM

Jeez. Our tube is totallly different. I have no idea what it is called but it is a tube with big red thing at the end and totally annoying. We are having it out on July 23rd and I can't wait.

Suzanne

Mom2TwinsPlus1 · #7 06-29-2007, 04:15 PM

We were told Emma couldn't get a mickey right away because her stomach was too small (she was 4.5 lbs) so they did a big yellow tube with a removeable red stopper in the end. I didn't have any issues keeping the extensions in. But Emma wasn't really active. I did however loop the tube and tape it to her stomach one time with paper tape. That way if it was tugged on she couldn't pull it out

cariaad · #8 06-29-2007, 04:37 PM

We got a knock off brand of MICkey with the initial surgery. It was called a Corflo Cubby and I hated it, it was a balloon like a MICkey but lots bigger on the outside. Before our 3 week post surgery visit I insisted the doctor have a MICkey in the office and show us how to change it. We couldnt even order the correct supplies for the Corflo, it was a nightmare. No one had ever heard of it. The company rep had fobbed a bunch off on the hospital to trial and we were one of the (not so) lucky ones to get one. I really like the Mickey, we change it about every other month. Had a problem with it breaking when it was new, but i think we weren't getting the proper inflation. It takes getting the knack of it. If they had tried to give us the foley with the stopper thing it would have been a no-go. Fortunately we have a progressive ped. surgeon who thinks those a re outdate and unsafe. He wont place them.

Alli was FFT, IUGR and SGA but didn't get it til areoun 16 months when she caught rsv anbd just couldn't nipple enough without exhausting herself. I dont think I see a GJ tube in our futeure because i won't do a 24 hour feed unless there is a serious reason, it is just too hard on a kid like Alli. Even taking Adderall for the ADHD, she runs 90 miles an hour form morning til night.

Anyway, Im finding lots of good info and hope everyone else is, too

Mom2TwinsPlus1 · #9 06-29-2007, 06:28 PM

Quote:

Originally Posted by cariaad

. If they had tried to give us the foley with the stopper thing it would have been a no-go. Fortunately we have a progressive ped. surgeon who thinks those a re outdate and unsafe. He wont place them.

Hey Deb just curious who did her surgery. Someone from the city I assume and was curious if I knew who they were. David Tuggle from Children's did Emma's. They really wanted to do a mickey but when they got in there the said the ballon to hold it in took up her whole tiny little tummy pretty much and there would be no room for her food.

Ainsley's Mom · #10 06-29-2007, 04:51 PM

Suzanne,
It sounds like Parker has a PEG. Is he getting a button, or getting it out completely?

Susan