Re: Barb- G-tube replacement frequency ?

[Guest guest]

I saw the package saying to use 5 cc. at first but then to add 1-2cc. if

there was any leakage from the site. I have 7 cc. in hers right now and

have always used about that. The girls' usually come out real gross looking

too, dark brown colored. It often made me wonder if there was internal

bleeding issues going on.

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 ?

>

>

> 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

>

>

>

>

>

>

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

>

[Guest guest]

I saw the package saying to use 5 cc. at first but then to add 1-2cc. if

there was any leakage from the site. I have 7 cc. in hers right now and

have always used about that. The girls' usually come out real gross looking

too, dark brown colored. It often made me wonder if there was internal

bleeding issues going on.

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 ?

>

>

> 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

>

>

>

>

>

>

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

>