Re: Re: G-tube/Nissen Opinions Needed

[Guest guest]

Thanks, Shari! I appreciate the information and glad to hear you had a good

experience with the PEG. I am leaning in the direction of just getting the PEG

at this point, so I am glad to learn it worked well for you.

Thanks again,

________________________________

To: polymicrogyria

Sent: Tue, July 19, 2011 7:44:42 AM

Subject: Re: G-tube/Nissen Opinions Needed

Hi ,

My son Ian has had a G-tube since he left the NICU at 8.5 weeks. He had feeding

issues and that was the only way to get him home. They had placed a PEG tube and

it was wonderful. Luckily his feeding caught up and we now just use it for meds,

of which he has many.

The doc said it could last him years and when I voiced concerns about his

getting pulled on from his movement, to illustrate how strong it was he said we

could hold him from it ;-) Well, Mommy got it caught on the steering wheel of a

little car he was riding in and pulled it right out! That was an extreme case

and I'm so sad I did. We had to get it replaced in the ER with a basic tube,

which is horribly large and gets irritated very easily.

Just last week I saw a new doc who is suggesting we put in a Mickey Button and

we have it ordered. It looks like it will be fine and hopefully, less irritating

than what he has now. My doc always told me that the Peg was wonderful and I do

realize it now. It was always clean, never irritated, etc. But he did have the

tube sticking out of it. Which at this age will become a toy ;-)

Not sure that helped, just wanted to share an experience with the Peg. I'm

hoping the Mickey will be as positive for us.

>

> > Callie has always had feeding issues. She was diagnosed as failure to

> > thrive early this year and then got a ng-tube at the end of March. In the

> > meantime she was diagnosed with eosinophilicesophagitis (EoE) and we

> > discovered she has many food allergies. We were hopeful the feeding tube

> > would be temporary, but now it appears she is going to need it for awhile

> > while we slowly introduce foods and try to determine exactly what she can

> > and can not have. So it is time to move on and get a g-tube.

> >

> > I learned there are two types of g-tubes... PEGs and buttons. The PEG seems

> > to be less convenient since it sticks out, but less involved and risky since

> > it does not involve surgery. The button seems to be more convenient, but

> > more risky initially. I was leaning towards playing it safe and just going

> > with the PEG, but then the surgeon advised Callie seems to be a good

> > candidate for a Nissen procedure to stop her reflux, which she struggles

> > with. If we opt for the Nissen we will get the button because surgery will

> > be required.

> >

> > I wrote about our appointment with the surgeon in more detail on Callie's

> > blog (http://calliebloggie.blogspot.com/2011/07/decisions-decisions.html).

> > Have many of you had the Nissen? Can you please tell me about your

> > experience? Did it stop your child's reflux and did everything go smoothly?

> > Do you have any opinions about a PEG vs. button? I am having trouble

> > making this decision and it would be helpful to hear about other

> > experiences.

> >

> > Thanks so much in advance!

> >

> > Mommy to Callie (20 months, BPP, EoE)

> > http://calliebloggie.blogspot.com/

> >

> >