Re: - G-tube replacement frequency ?

[Guest guest]

I do change them myself so not a problem there, it is just that I call

Mayo to get new ones and sometimes barely seem to get one only to have to

turn around and purchase another one or two.

I am interested in your g-tube. I wonder if it might be a better one

to try. I may speak to their GI about it at their next visit. Thanks for

the information.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: G-tube replacement frequency ?

>

>

> 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?

>

>

>

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

I do change them myself so not a problem there, it is just that I call

Mayo to get new ones and sometimes barely seem to get one only to have to

turn around and purchase another one or two.

I am interested in your g-tube. I wonder if it might be a better one

to try. I may speak to their GI about it at their next visit. Thanks for

the information.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: G-tube replacement frequency ?

>

>

> 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?

>

>

>

>

>

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>