Re: G-tube replacement frequency ?

[Guest guest]

Darla,

will be seven in March. She has had a g-tube since about 15 months. I

have found that the need to replace buttons depends a lot upon both the kid

and the brand of button you use.

Mic-Key buttons are, well, not the highest quality. We needed to replace these

every couple of weeks. (I also found that the tubing left a lot to be desired

if

you use the pump at night). We tried just about every button out there for a

while and finally used the Mini. has had lots of problems with rejecting

the button--tons of granulation tissue and infections that had to be controlled

by cutting out the stoma and replacing it with a new one. For several years we

replaced buttons every few months.

Over the last year, the pH in 's tummy has gone down--a lot. We changed

meds to Nexium. It helped a little bit. 's buttons broke. We had

catastrophic button failures every week. The dumb thing would break and the

button would come out in her sleep. It was terrible. Our GI doc finally

suggested changing to a Nutriport. It is a bit more expensive for each piece

but this one lasted about six months. That is a bit less expensive than

changing them every week. Insurance pays for no more than one a month.

http://www.appliedmedical.net/amtminibut.htm

A Kendall Nutriport looks a lot like a Mini or a Mickey. We ordered some

cheap pH paper online (the kind meant for school kids) and tested 's

gastric pH. If you're taking prevacid, nexium, zantac, etc, the pH should be 4

or above. If you order the paper, be sure to get the kind that goes down to 1. I

think the stuff we purchased cost about $5, including shipping.

I don't think that replacing buttons every month or two is unreasonable at all.

Do you change them at home?

[Guest guest]

HI Darla, Matt has the mickey g-tube, when he was very young and his

reflux was severe and not under control, we changed his tube, very

often it could be anywhere from 4 weeks to 3 months, and usually it

was the balloon had a hole, and the gunk stuck to his tube was

gross. AS his reflux became under control with medication, we only

change his tube every 3 to 4 months. And the tube is in better

condition than when he was younger. And we only fill his tube with

5 cc's of water, as this is what was told to us by his GI, and i

checked his Mickey G-tube kit and per the instruction booklet that

comes with the kit recommends 5 cc's of water. I know as children

get older also the tube sight area can stretch with growth of the

child, and therefore might need a bigger size tube, so it will stay

in place. Matt is still using a 14 3.0 French size tube and it is

looser than when he was younger but his Doc feels that it still

stays in place and does not come out if you give a little tug and

therefore does not need the next size tube yet. I hope this helps.

And if i dont post before the holidays again I hope your family

along with all the other families here have a Very Happy Holiday!!

Barb

[Guest guest]

HI Darla, Matt has the mickey g-tube, when he was very young and his

reflux was severe and not under control, we changed his tube, very

often it could be anywhere from 4 weeks to 3 months, and usually it

was the balloon had a hole, and the gunk stuck to his tube was

gross. AS his reflux became under control with medication, we only

change his tube every 3 to 4 months. And the tube is in better

condition than when he was younger. And we only fill his tube with

5 cc's of water, as this is what was told to us by his GI, and i

checked his Mickey G-tube kit and per the instruction booklet that

comes with the kit recommends 5 cc's of water. I know as children

get older also the tube sight area can stretch with growth of the

child, and therefore might need a bigger size tube, so it will stay

in place. Matt is still using a 14 3.0 French size tube and it is

looser than when he was younger but his Doc feels that it still

stays in place and does not come out if you give a little tug and

therefore does not need the next size tube yet. I hope this helps.

And if i dont post before the holidays again I hope your family

along with all the other families here have a Very Happy Holiday!!

Barb

[Guest guest]

Grace is actually on the other side of this. Her current one has been in for 6 months now! Her GI was amazed it has lasted so long.

We were told much different about the balloon though. Our GI suggested to always use 5 cc's. We make sure we always use the same amount so when we try to deflate (or check the balloon) we can be certain it is correct. We have never had a problem with any of her buttons falling out or clogging. Actually she has only had two buttons since being switched from a "big" g tube. (Her last one was changed because it was too small for her.)

She also uses the Mic Key button. Her size is a 16 french 2.5 cm if that makes any difference.

I am now just thinking of changing her button, just because I know it has to fall out one of these days. (Better to catch it at home and not when we are out.)

Best wishes

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[Guest guest]

Grace is actually on the other side of this. Her current one has been in for 6 months now! Her GI was amazed it has lasted so long.

We were told much different about the balloon though. Our GI suggested to always use 5 cc's. We make sure we always use the same amount so when we try to deflate (or check the balloon) we can be certain it is correct. We have never had a problem with any of her buttons falling out or clogging. Actually she has only had two buttons since being switched from a "big" g tube. (Her last one was changed because it was too small for her.)

She also uses the Mic Key button. Her size is a 16 french 2.5 cm if that makes any difference.

I am now just thinking of changing her button, just because I know it has to fall out one of these days. (Better to catch it at home and not when we are out.)

Best wishes

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[Guest guest]

I have heard that one mic-key every month or two is normal. I was

told to fill the balloon with 6cc of sterile water never tap (due to

chemicals that will eat away at the balloon). That should help the

balloon last longer too. You may be over filling causing the the

balloon to overstretch and eventually break. Maybe this will help!!

Good luck, Dawn

[Guest guest]

I have heard that one mic-key every month or two is normal. I was

told to fill the balloon with 6cc of sterile water never tap (due to

chemicals that will eat away at the balloon). That should help the

balloon last longer too. You may be over filling causing the the

balloon to overstretch and eventually break. Maybe this will help!!

Good luck, Dawn

[Guest guest]

Darla, What size are your girls' Mic-Key's? I imagine they must be close to Chelsea's size; 2.5cm, 18fr. I have had almost nil in the way of problems with her gtube. I change it every 3 to 4 mos, and usually by that time, the valve is starting to leak, but not bad. I only put 5cc's of H2O in the balloon, I was told that was the max amount to use. I checked it weekly at first, but now I don't bother unless it seems low. It usually loses a cc or so over time, but that really never causes any problems either. There is also very little leakage from the stoma, usually just a little mucous that I clean up daily.

I would try using less H2O in the balloons. A good gage to see if it is fitting properly, is you should be able to slide a dime in between the tube and her skin when she is laying flat on her back. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Darla, What size are your girls' Mic-Key's? I imagine they must be close to Chelsea's size; 2.5cm, 18fr. I have had almost nil in the way of problems with her gtube. I change it every 3 to 4 mos, and usually by that time, the valve is starting to leak, but not bad. I only put 5cc's of H2O in the balloon, I was told that was the max amount to use. I checked it weekly at first, but now I don't bother unless it seems low. It usually loses a cc or so over time, but that really never causes any problems either. There is also very little leakage from the stoma, usually just a little mucous that I clean up daily.

I would try using less H2O in the balloons. A good gage to see if it is fitting properly, is you should be able to slide a dime in between the tube and her skin when she is laying flat on her back. HTH

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)