Re: e-G-tube replacement frequency ?

[Guest guest]

I know Zipporrah's is a good fit, but I think we may need to go to a larger

size as she uses the same size as Zipporrah does. The docs haven't thought

she needed a bigger one, but I think it is tight fitting. The funny thing

is that Asenath's ALWAYS last much longer than Zipporrah's have. I have had

one of Asenath's last close to a year before. They both use a smaller size

than yours does. They use the 14 French 2.0 cm. mic-key button. I like the

smaller size of the 14 French verses the 16/18 French, but I think Asenath

needs a longer one, maybe a 2.5 cm. From different people who have

responded, plus different research sites I have been to, it sounds like

Asenath's change rate is pretty good and Zipporrah's isn't great but not too

horrible. Thanks for your info.

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, 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]

I know Zipporrah's is a good fit, but I think we may need to go to a larger

size as she uses the same size as Zipporrah does. The docs haven't thought

she needed a bigger one, but I think it is tight fitting. The funny thing

is that Asenath's ALWAYS last much longer than Zipporrah's have. I have had

one of Asenath's last close to a year before. They both use a smaller size

than yours does. They use the 14 French 2.0 cm. mic-key button. I like the

smaller size of the 14 French verses the 16/18 French, but I think Asenath

needs a longer one, maybe a 2.5 cm. From different people who have

responded, plus different research sites I have been to, it sounds like

Asenath's change rate is pretty good and Zipporrah's isn't great but not too

horrible. Thanks for your info.

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, 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)

>