Re: G-tube placement issue

[Guest guest]

Darla,

Our had hers placed the same way most around here have it done. It is

done by putting an endoscope down into the stomach. The light then shines

through the abdominal wall. A hole is then poked from the outside towards the

light.

I don't know why a PEG tube (the long one) would need to be changed

surgically. I would not want one with a disc on the inside. The type with a

balloon is easier. We personally don't like the Mickey because we think that it

is poor quality. But there are many brands of buttons. Ours is a Nutriport. It

lasts months vs the week or less that you can have with other buttons.

Our had a PEG with an inner disc placed first. This was going to be

replaced six weeks after her g-tube insertion. (Docs usually just pull it out in

the office.) Anyway, it got wrapped around her crib and when I picked her up it

stayed in the crib. We both cried for a very long time. It was replaced in the

office with a button with a balloon.

[Guest guest]

Darla,

Our had hers placed the same way most around here have it done. It is

done by putting an endoscope down into the stomach. The light then shines

through the abdominal wall. A hole is then poked from the outside towards the

light.

I don't know why a PEG tube (the long one) would need to be changed

surgically. I would not want one with a disc on the inside. The type with a

balloon is easier. We personally don't like the Mickey because we think that it

is poor quality. But there are many brands of buttons. Ours is a Nutriport. It

lasts months vs the week or less that you can have with other buttons.

Our had a PEG with an inner disc placed first. This was going to be

replaced six weeks after her g-tube insertion. (Docs usually just pull it out in

the office.) Anyway, it got wrapped around her crib and when I picked her up it

stayed in the crib. We both cried for a very long time. It was replaced in the

office with a button with a balloon.

[Guest guest]

At 6months old Elijah had his G-tube placed with an operation.

Because of his reflux he also had a Nissen Fundoplication procedure

done. This is where they wrap the top of the stomach to prevent

anything from coming back up. It works like a one way valve. After

the surgery he had to go in to the Docs office every three months to

have it changed. After a couple of times we just do it oursleves at

home. No problem. He has the Mini button with a ballon.

I also have one of those yucky stories except I didn't see the

balloon pull out when I picked Eli up and I was rocking him for over

an hour. When I changed his diaper I looked at his stomach and to my

freight only a little hole remained. It took a little work but with

Daddy's quick moving we got a new one back in with out a hospital

trip. Wow! I was careful never to do that again and try to tape it

down always.

> I was wondering how many people had their children's g-tubes

placed

> endoscopically rather than through an operation, and for those of

you who

> had the procedure done that way, did you have to have it removed

> endoscopically as well or did the docs just gently pull them out

through the

> opening of the stomach to replace it with a mic-key button or

other type?

> Joey had his placed this way and the docs now want to change it

> endoscopically again with sedation. It just seems a strange way

to do it.

> I LOVED how Asenath and Zipporrah both had their mic-key buttons

placed

> immediately rather than having the long tube for the first several

weeks.

> Unfortunately Joey's long tube was placed in September or October

of last

> year and " fell through the cracks " as they said for changing it to

a mic-key

> button and the last foster parents didn't realize it was supposed

to be

> changed or just didn't care to do so, so now we have to deal with

it when we

> go back to Iowa City (1 1/2 hrs. from here) for his check-up.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

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

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome,

iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

At 6months old Elijah had his G-tube placed with an operation.

Because of his reflux he also had a Nissen Fundoplication procedure

done. This is where they wrap the top of the stomach to prevent

anything from coming back up. It works like a one way valve. After

the surgery he had to go in to the Docs office every three months to

have it changed. After a couple of times we just do it oursleves at

home. No problem. He has the Mini button with a ballon.

I also have one of those yucky stories except I didn't see the

balloon pull out when I picked Eli up and I was rocking him for over

an hour. When I changed his diaper I looked at his stomach and to my

freight only a little hole remained. It took a little work but with

Daddy's quick moving we got a new one back in with out a hospital

trip. Wow! I was careful never to do that again and try to tape it

down always.

> I was wondering how many people had their children's g-tubes

placed

> endoscopically rather than through an operation, and for those of

you who

> had the procedure done that way, did you have to have it removed

> endoscopically as well or did the docs just gently pull them out

through the

> opening of the stomach to replace it with a mic-key button or

other type?

> Joey had his placed this way and the docs now want to change it

> endoscopically again with sedation. It just seems a strange way

to do it.

> I LOVED how Asenath and Zipporrah both had their mic-key buttons

placed

> immediately rather than having the long tube for the first several

weeks.

> Unfortunately Joey's long tube was placed in September or October

of last

> year and " fell through the cracks " as they said for changing it to

a mic-key

> button and the last foster parents didn't realize it was supposed

to be

> changed or just didn't care to do so, so now we have to deal with

it when we

> go back to Iowa City (1 1/2 hrs. from here) for his check-up.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

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

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome,

iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

> > I was wondering how many people had their children's g-

tubes

> placed

> > endoscopically rather than through an operation, and for those

of

> you who

> > had the procedure done that way, did you have to have it removed

> > endoscopically as well or did the docs just gently pull them out

> through the

> > opening of the stomach to replace it with a mic-key button or

> other type?

> > Joey had his placed this way and the docs now want to change it

> > endoscopically again with sedation. It just seems a strange way

> to do it.

> > I LOVED how Asenath and Zipporrah both had their mic-key buttons

> placed

> > immediately rather than having the long tube for the first

several

> weeks.

> > Unfortunately Joey's long tube was placed in September or

October

> of last

> > year and " fell through the cracks " as they said for changing it

to

> a mic-key

> > button and the last foster parents didn't realize it was

supposed

> to be

> > changed or just didn't care to do so, so now we have to deal

with

> it when we

> > go back to Iowa City (1 1/2 hrs. from here) for his check-up.

> >

> > See www.caringbridge.org/ia/mitomomof9 and

> www.heartbeatsformito.org to see

> > a photo look into what Mito looks like

> > Darla: mommy to

> > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures,

G-

> tube,

> > hypotonicity, disautonomy, SID, global delays, asthma, cyclic

> vomiting,

> > bladder issues, wheelchair for distances, eye issues, autistic

> behaviors,

> > gastric emptying issues...

> > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

> SID, GERD,

> > dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

> excessive

> > phlegm, asthma, trach issues, aberrant subclavian artery,

> disautonomy,

> > hypertonicity, migraines, possible seizures, dumping syndrome,

> iron

> > deficiency, ...

> > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8),

Kezia

> (4), &

> > Marquis (3), Joey & (12 months) (some with Mito

symptoms)

[Guest guest]

> > I was wondering how many people had their children's g-

tubes

> placed

> > endoscopically rather than through an operation, and for those

of

> you who

> > had the procedure done that way, did you have to have it removed

> > endoscopically as well or did the docs just gently pull them out

> through the

> > opening of the stomach to replace it with a mic-key button or

> other type?

> > Joey had his placed this way and the docs now want to change it

> > endoscopically again with sedation. It just seems a strange way

> to do it.

> > I LOVED how Asenath and Zipporrah both had their mic-key buttons

> placed

> > immediately rather than having the long tube for the first

several

> weeks.

> > Unfortunately Joey's long tube was placed in September or

October

> of last

> > year and " fell through the cracks " as they said for changing it

to

> a mic-key

> > button and the last foster parents didn't realize it was

supposed

> to be

> > changed or just didn't care to do so, so now we have to deal

with

> it when we

> > go back to Iowa City (1 1/2 hrs. from here) for his check-up.

> >

> > See www.caringbridge.org/ia/mitomomof9 and

> www.heartbeatsformito.org to see

> > a photo look into what Mito looks like

> > Darla: mommy to

> > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures,

G-

> tube,

> > hypotonicity, disautonomy, SID, global delays, asthma, cyclic

> vomiting,

> > bladder issues, wheelchair for distances, eye issues, autistic

> behaviors,

> > gastric emptying issues...

> > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

> SID, GERD,

> > dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

> excessive

> > phlegm, asthma, trach issues, aberrant subclavian artery,

> disautonomy,

> > hypertonicity, migraines, possible seizures, dumping syndrome,

> iron

> > deficiency, ...

> > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8),

Kezia

> (4), &

> > Marquis (3), Joey & (12 months) (some with Mito

symptoms)

[Guest guest]

Darla,

Asher's was changed from a gtube to a mickey without sedation and it was quite

easy. Done at about 4-6 weeks post op. Asher had his g tube put in surgically

b/c he was so distended that the laproscopic procedure would have been too

dangerous.

HTH,

Annne R

[Guest guest]

Darla,

Asher's was changed from a gtube to a mickey without sedation and it was quite

easy. Done at about 4-6 weeks post op. Asher had his g tube put in surgically

b/c he was so distended that the laproscopic procedure would have been too

dangerous.

HTH,

Annne R

[Guest guest]

I don't think they can remove the "big tube" without the endoscope. I think I remember them telling me that there is a plastic stopper on the end of the tube, wich is in the stomach and is much too big to fit out through the stoma.

I would not worry too much about this for Joey. When Grace had her's changed, I don't think she was under for more than 10 min. Even with all the mito protocal she was home by about noon the same day.

Best wishes

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[Guest guest]

I don't think they can remove the "big tube" without the endoscope. I think I remember them telling me that there is a plastic stopper on the end of the tube, wich is in the stomach and is much too big to fit out through the stoma.

I would not worry too much about this for Joey. When Grace had her's changed, I don't think she was under for more than 10 min. Even with all the mito protocal she was home by about noon the same day.

Best wishes

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[Guest guest]

,

There is a dics on the inside of some PEG tubes (the long tube). It is often

changed in the office but it causes pain.

[Guest guest]

,

There is a dics on the inside of some PEG tubes (the long tube). It is often

changed in the office but it causes pain.