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Permanent J tube

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Yes, my son Zak has both, a G-tube button on his left and a J-tube button on

his right. We use the J-button for drip feedings all night long and the

G-button for his water and medications. Having 2 buttons is a blessing as now

he no longer vomits his formula up and when we bolus his meds and water down

the G side, they are absorbed immediately.

Talk to your pediatric surgeon about both, I'm so glad I did.

Debra

Trynton & Zakarya's mother

************************************** See what's free at http://www.aol.com.

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Hi everyone. We are having alot of problems with my daughters G/J tube

(she has both and its pretty much a makeshift apparatus). They have

suggested we consider a permanent J tube. Anyone have any experiences

with J tubes, temp or perm? Thanks for the feedback.

- M.

mother to Anabelle, 16 months

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I echo what Debra is saying, we have a j tube in via the gastrostomy site,

and yes its a annoying that each

time they pop you need a radiograph to pass the new one, which means we can

no longer do this ourselves, but like Zak we are now

waiting for surgery this summer to do a separate J mickey for night time

pump feeds and keep the gastrostomy for venting and meds.

Amelie has stayed out of hospital all winter thanks to J feeding its the

best thing we ever did, I dont think her team ever expected her

to stay home and its been a year!!

good luck Lesley

mum to Amelie

>

> Yes, my son Zak has both, a G-tube button on his left and a J-tube

> button on

> his right. We use the J-button for drip feedings all night long and the

> G-button for his water and medications. Having 2 buttons is a blessing as

> now

> he no longer vomits his formula up and when we bolus his meds and water

> down

> the G side, they are absorbed immediately.

>

> Talk to your pediatric surgeon about both, I'm so glad I did.

>

> Debra

> Trynton & Zakarya's mother

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

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Thank you so much for the feedback. We are going to talk to her

surgeon next week about this option. Wanted to ask though, what is the

age of your children? Did any of them have the fundoplication (not

sure how its spelled) done? and is there any movement towards

attempting to feed by stomach or mouth in the near future once the

perm one is in? We have started giving Anabelle some feeds in her G &

were told if we do the perm J we won't be feeding at all by G or

mouth. We also recognize that she needs to stop having all these

interruptions with her feeds because her slow weight gain is an issue

(11.5 pounds, unrepaired TOF). These decisions are so difficult to

make and I appreciate everyone sharing their story.

- M.

mother to Anabelle, 16 months.

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u mite not b at all but at first look at me im 21 had a jtube and now ive

got bak gtube and am eating bits by mouth NEVER give up

>

> Thank you so much for the feedback. We are going to talk to her

> surgeon next week about this option. Wanted to ask though, what is the

> age of your children? Did any of them have the fundoplication (not

> sure how its spelled) done? and is there any movement towards

> attempting to feed by stomach or mouth in the near future once the

> perm one is in? We have started giving Anabelle some feeds in her G &

> were told if we do the perm J we won't be feeding at all by G or

> mouth. We also recognize that she needs to stop having all these

> interruptions with her feeds because her slow weight gain is an issue

> (11.5 pounds, unrepaired TOF). These decisions are so difficult to

> make and I appreciate everyone sharing their story.

> - M.

> mother to Anabelle, 16 months.

>

>

>

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Thanks for the encouragement. Doctors make things seem so hopeless

sometimes.

- M.

> >

> > Thank you so much for the feedback. We are going to talk to her

> > surgeon next week about this option. Wanted to ask though, what

is the

> > age of your children? Did any of them have the fundoplication

(not

> > sure how its spelled) done? and is there any movement towards

> > attempting to feed by stomach or mouth in the near future once

the

> > perm one is in? We have started giving Anabelle some feeds in

her G &

> > were told if we do the perm J we won't be feeding at all by G or

> > mouth. We also recognize that she needs to stop having all these

> > interruptions with her feeds because her slow weight gain is an

issue

> > (11.5 pounds, unrepaired TOF). These decisions are so difficult

to

> > make and I appreciate everyone sharing their story.

> > - M.

> > mother to Anabelle, 16 months.

> >

> >

> >

>

>

>

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lol do they evder sometimes i think they like to tell us wat could happen

>

> Thanks for the encouragement. Doctors make things seem so hopeless

> sometimes.

> - M.

>

>

>

> > >

> > > Thank you so much for the feedback. We are going to talk to her

> > > surgeon next week about this option. Wanted to ask though, what

> is the

> > > age of your children? Did any of them have the fundoplication

> (not

> > > sure how its spelled) done? and is there any movement towards

> > > attempting to feed by stomach or mouth in the near future once

> the

> > > perm one is in? We have started giving Anabelle some feeds in

> her G &

> > > were told if we do the perm J we won't be feeding at all by G or

> > > mouth. We also recognize that she needs to stop having all these

> > > interruptions with her feeds because her slow weight gain is an

> issue

> > > (11.5 pounds, unrepaired TOF). These decisions are so difficult

> to

> > > make and I appreciate everyone sharing their story.

> > > - M.

> > > mother to Anabelle, 16 months.

> > >

> > >

> > >

> >

> >

> >

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-Hi, my name is and my daughter's name is Alissa. Alissa is 24

monthes and is currently G-Tube fed although she was jtube fed when she

was 9 monthes old. She has never had a fundoplication. ( There are no

gueguarantees with fundoplications... if thats the route you take make

sure you got a top notch surgeon.Its a pretty extensive surgery).

For us... the J tube was my saving grace.... Alissa was vomiting and

refluxing soo much that I was soo scared of her aspirating I couldn't

watch anymore... Those were the most difficult times for me. Once she

got her J tube in...no more vomiting! Yepee!! We still continued to

feed her thich puree's by mouth but it was tricky cause she was on the

pump for 19 hours of the day so she was never hungry but we never gave

up. |Then miraculously ... she passed a feeding study... and outgrew

her vomiting within 3 three monthes which is highly unusual (at least

thats what the doctors told us). She still could not have water by

mouth so I begged the docs to put the gtube back in so we could give

her bolus water feeds so I wouldn't have to keep her on a pump for

hours just for the water.

I know some people did not want to get a jtube for there children

because they didn't want there child on a pump all day.. but for me...

I could n't bare to see her refluxing soo much and with Alissa's high

risk of aspiration I felt that she would have gotten an pneomia and

that would have been it. I hope this helps.

..-- In CHARGE , " mami122006 " wrote:

>

> Thank you so much for the feedback. We are going to talk to her

> surgeon next week about this option. Wanted to ask though, what is

the

> age of your children? Did any of them have the fundoplication (not

> sure how its spelled) done? and is there any movement towards

> attempting to feed by stomach or mouth in the near future once the

> perm one is in? We have started giving Anabelle some feeds in her G &

> were told if we do the perm J we won't be feeding at all by G or

> mouth. We also recognize that she needs to stop having all these

> interruptions with her feeds because her slow weight gain is an issue

> (11.5 pounds, unrepaired TOF). These decisions are so difficult to

> make and I appreciate everyone sharing their story.

> - M.

> mother to Anabelle, 16 months.

>

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