What are the ABC's of the g-tube? -

[Guest guest]

Hi !!

This is my best attempt at answering all of your questions. If I don't explain

something well enough, feel free to ask for clarification, ok?? Here goes!

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?

I think Connor will determine if it's uncomfortable to sleep on his belly

anymore. generally sleeps on his side, but does occassionally tummy

sleep, and the button doesn't seem to bother him at all.

The only changes that we have for 's crib is that I keep a night stand

next to the crib to set the pump on, and a cup hook above the night stand to

hang the bag from. I don't have an IV pole, that is at his mom's house. And I

try to arrange him so that his head is at the opposite end of the crib, away

from the pump and tubing.

We have an older home, and it can be kind of drafty in his room, so I usually

use blanket sleepers for during the winter. I cut a hole in the crotch

of the sleeper, and string the tubing through the hole, and then connect it to

the button. This way the tubing comes out of the sleeper at the bottom, and NOT

up by his neck.

when I'm using two-piece jammies, I tape the tube just like I do during the day,

pass it between his legs, and up and out the back of the jammie bottoms. Again,

the tubing is away from his neck in case he rolls around a lot.

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

I agree with . It took about a week for 's to heal, too.

had a Foley catheter in the beginning. About 6 weeks after surgery his

catheter was changed to an AMT mini button. The button is MUCH easier!!

3. How do you handle infection at the site.

Again, the same as .

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

just had his first bout with granulation tissue. He also had his first

infection of the stoma at the same time. We used Cefzil (oral antibiotic) for

the infection, and Triamcinolone Acetonide .1%, for the granulation tissue. It

took care of it well, with none of the pain associated with burning the tissue

with Silver Nitrate.

We were also told to pad the tube site with extra 2x2s whenever there is ANY

irritation. The Dr explained that granulation tissue is caused by tube movement

irritating the stoma, and that the extra padding will help minimize tube

movement.

Is it Prevacid or Prilosec that you can get in a liquid form that can be

injected into the tube?

We use the Prevacid Solutab, but won't take it by mouth. We dissolve the

Tab with a baking soda/water mixture (1Tbsp of baking soda to 1/4 c warm water,

mix and suck up 5-6cc in a 10cc syringe with the Tab already in the syringe),

let the Tab dissolve, and shoot it down the tube, followed by a 10cc sterile

water flush.

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

Connor needs a Pyroplasty or the NF procedure?

I believe that the need for a pyloroplasty, or a fundo, should be determined

BEFORE he has surgery. If he is suffering from delayed gastric emptying, or

reflux, before surgery, then these procedures can be done at the same time as

the g-tube placement. If you wait until later, it would involve a second

abdominal surgery.

As far as vomiting and retching go, the majority of it can be controlled with

regular venting. Dr H recommends venting for 15 min every 6 hours, and venting

for 5 min with every gagging/retching episode. This removes air from the tummy,

and is especially necessary if a fundo is done.

Dr H's method is that " ounce of prevention " that you were talking about. The Drs

here told us that we didn't need to vent at all unless his tummy was bloated.

This definitely didn't help his retching, and eventually his fundo came undone.

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?

I think it affects all kids differently. has been conditioned to eat,

BUT has NEVER been an eater, so it that he differs from Connor. Judith's

son, , was an eater when he got his tube, and she can tell you how they

went about setting up a feeding/pump schedule, so that got the maximum

benefit from his g-tube, as well as remaining an eater.

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

your child is thriving enough without it?

Like , I'm not sure about this one, as is still on continuous

feeds. But we've been told that the button should stay in place for a minimum of

6 months with absolutely NO use before we even consider having it removed.

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?

I have no answer for you here. was 8.5 months of age when he got his

tube, and there was no explanation necessary. It was just another medical

procedure that he had to endure.

10. As many of you know, Connor lives life at full throttle! 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... "

is ALL boy too. And he doesn't live in a bubble. You have to be more

careful while Connor has the tube, because the tube has to be replaced by a Dr.

However, once he has the button, you can replace it yourself. I had nightmares

about this before it happened, and the first time I had to re-insert the button

myself, it turned my stomach, BUT you do get over it. It's not nearly as awful

as your imagination leads you to believe it will be! LOL

's connector tube is secured to his diaper at ALL times! I run the tube

from the button, under one diaper tab, then snake it up and under the second

tab, and tape the tube squarely between the two tabs, to the front of his

diaper. He can drag his backpack around behind him, and it won't pull on his

button at all. Same with rolling around at night.

We also keep in " Onesie " type shirts (snap at the crotch) so that the

connector tube doesn't flap around and get " caught " on anything.

If you're going to be at the convention this year, I'd be more than happy to

show you how I do things, maybe give you some different ideas???

I think you'll be surprised at how quickly you all adjust to the changes brought

about by a tube placement. In the beginning, basic tube care and such, will take

a little longer, but once you get into a routine, it's not hard. If I can answer

any other questions, feel free to ask!

Hugs for you all!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm), G-Tube)