Jen: Take a look!! Re: What are the ABC's of the g-tube?

[Guest guest]

I hope my emails have not got you feeling down. For the most part,

Colin- has been successful with it. He gained over 10 pounds

within the first two months of being on it although now it seems he

has hit a dry spot. He is a very active child - we do not treat him

any differently than we would someone without RSS. I feel it is very

important for him to get as involved with activities just like his

peers.

Colin- has been able to sleep in all positions with the tube -

even on his tummy if he feels like it.

After the initial use of hydrogen peroxide days after the surgery,

the button spot can pretty much be left alone. I clean it with soap

in the bath to get crust off and then use this cream (the name is at

home) to put around the irritated tissue.

Colin- eats on his own now - as a matter of fact, we skip the

feedings at night sometimes as a treat for his good eating. Our goal

is to get him to want to eat so much on his own that he won't need

the tube. We treat it as a reward.

We explained to our son why he needed it. At the time he was only 18

pounds and I thought he was going to die. I told him it was to help

him gain weight so he could get strong like Buzz Lightyear.

I hope this helps.

M.

(mom to Colin- RSS 4 and Gillian 7 months non-RSS)

> >

> > Dear Friends,

> >

> > Well, next Friday Connor gets the g-tube. Today it just dawned

on

> > me that I have a lot of specific questions that I hope you all

will

> > respond to in the next few days. I have to admit that in the

past

> I

> > always skipped the posts that dealt with g-tubes, pyroplasty

> surgery

> > and the nissen fundoplication. Connor was an " eater " and we

didn't

> > have to learn that. Well, now, I have to play catch up.

> >

> > So, in the Spirit of Letterman (Drum Roll Please!!!), Here

> are

> > my Top 10 Questions on how to rearrange your family's life

around a

> > g-tube fed child.

> >

> > 1. Connor is a belly sleeper. Will he have to change this for

the g-

> > tube to work properly? Will I have to manipulate his crib in any

> way

> > to assist the feed?

> >

> > 2. How long does it usually take for the surgery site to heal?

> >

> > 3. How do you handle infection at the site.

> >

> > 4. How do you handle tissue granulation at the site?

> >

> > 5. Is it Prevacid or Prilosec that you can get in a liquid form

> that

> > can be injected into the tube?

> >

> > 6. If the slow feeds overnight cause a lot of vomiting, would

that

> > indicate that Connor needs a Pyroplasty or the NF procedure?

> >

> > 7. How will the feeds affect his oral feeding? We worked for 2

1/2

> > long years to get Connor's mouth desensitized and get him to

> > lateralize and chew his food. Even though the malocclusion of

his

> > jaw is prohibiting full digestion of his food, AT LEAST WE CAN

GET

> > IT IN HIM! Is he going to lose this function due to a lack of

> > hunger?

> >

> > 8. When do you get to take the tube out? What medical criteria

> > determines that your child is thriving enough without it?

> >

> > 9. What do I tell my son? He's two and a half and very self

> aware.

> > In a few days he's going through a surgery that's going to

change

> > his life for the better (we hope). What do I tell him?

> >

> > 10. As many of you know, Connor lives life at full throtle!

He's

> > all " boy. " I remember a post from Judith about her son popping

out

> > the tube while playing at leaping lizards. Besides not sliding

on

> > your belly, what other things should Connor be careful of.

(I.E.

> > The playgroud, wrestling with Daddy and brothers, karate,

> > gymnastics, etc, etc, etc.) I don't want to put my son in a

bubble,

> > but I know that I don't want to deal with a popped out g-tube

> > either. You know the ole' saying, " An ounce of prevention... "

> >

> > So, that's all for now. I'm sure as I obsess about this for the

> > rest of the day, I'll probably come up with at least another

twenty

> > questions. I would like to thank Maloy in Norfolk and Alison in

> > andria for helping me thus far. Your calmness has been

greatly

> > appreciated (grin).

> >

> > Hugs to All!

> >

> >

> > Mom to Graham 8 ADD; Cameron 5; Connor 2 IUGR RSS Kyphosis,

> > Asymmetry, Periactin, Prevacid, Zantac Nutropin in two weeks; g-

> tube

> > in 6 days.