PLEASE talk to me about g tubes (aka peg)

[JSerene]

Hi all. Any tips, experiences, etc you can give would be much appreciated. My dd is getting her G tube in 2 days and although we are relieved to get rid of the NG we are all (dd, dh and myself) slightly apprehensive about the G tube.

So - can you really go swimming in a chorine pool? Does it ever leak? Has anyone accidentally pulled it out? Does it stay tender for long? Infections? Skin problems? Funny stories? Anything at all, really, you want to say? ...

Thank you. Jen.

[gsmom]

Originally Posted by JSerene

So - can you really go swimming in a chorine pool? Does it ever leak? Has anyone accidentally pulled it out? Does it stay tender for long? Infections? Skin problems? Funny stories? Anything at all, really, you want to say? ...

.

Yes. Ours doesn't, but some do. Yes, but it's less freaky than it sounds. Ours didn't. Mild infection, however, we've used polymem wound care foam at the slightest sign of any redness and it's gone in a day. Ditto to the previous statement. Someone once told me it's like a really big belly button piercing.

The procedure for us was very short and the discomfort was handled via motrin and tylenol for a day. It's saved Reese's life, but it was a huge decision for us. Good luck.

[Momily]

My son had his PEG tube many years ago (got it 10 years ago, got it out 7 years ago), but I the summer he was 2 we swam in a public chlorinate pool every single day of the summer unless it was raining. I kept it covered with a rash guard mostly so I didn't have to deal with lifeguards questioning me. His tube site never looked better, the chlorine kept it clean. Did a little get in his stomach? Undoubtedly, but he swallowed way more than that. As my doctor said "A gtube site/ and stomach are not sterile, they're only as clean as what a child puts in their mouth. If you think about what a typical toddler (or mine) puts in their mouth you'll realize that kids are designed to handle a fair amount of stuff.

As far as other stuff -- we had major leaking when it first got put in, but that's rare, we had occasional leaking after that, but just drizzles, like if he was full from a feed and you made him laugh. He did have one infection, and that was hard, but for the most part no trouble. We actually kept his PEG in for a long time because I didn't want to deal with it getting pulled out. Most people make a different choice and switch to a button which can get pulled out -- they'll show you how to pop it back in. For my son, it was tender a couple of weeks, but we went from 100% oral to 100% g-tube overnight, and that was really hard from a regulatory point of view (he wanted a bottle so badly those first months), which made it hard to sort out if he was upset by that or by the actual tube site.

We had far fewer g-tube problems than I anticipated. He never had an NG so I can't compare but people I know say the g-tube is so much easier and that they never regretted the switch.

[bandgeek]

DD is 2 years old and has her gtube since just after birth (they placed it at 3 weeks). Her soreness lasted about a week, maybe a week and a half, but it was manageable pain, I think. She'd only wince if you actually *pushed* on it. Tapping it or bumping it didn't seem to bother her.

The PEG never got pulled out, although I did accidentally tug on it pretty hard once. She did get one minor infection when she was about 3 months, I *think* just before she got it switched to a mic-key. No big deal, cleared up with topical antibiotics.

The mic-key got pulled out quite a few times but it's no big deal to just pop it back in. Now that she has a mic-key GJ we're a lot more careful because it means a trip to radiology to get it placed again if it gets pulled out.

I've taken DD in the bath and pool, but never anywhere with chlorine, although I can't imagine that would be a problem. If anything, it might help keep the site cleaner.

It leaks a tiny bit, but not formula, just a bit of gooey ooze. We put a cloth gtube pad around her site. I make them but if you google it you'll find places to buy them.

I don't know what developmental stage your DD is at, but she may like a gtube baby. I made one for my son and he gets a kick out of taking care of a baby just like his sister.

So here's a funny story for you:

My friends all have little boys. So my son mostly plays with boys. When I had DD, she needed a tube of course. Then a met a lady who's DD had the same problems and she also has a tube. DS at that point knew 2 little girls with tubes (and all the boys did not have one). He was about 3, maybe 3 1/2 and one day out of the blue he said, "Mama, boys have penises and girls have feeding tubes". Later, one of my friends had a little girl (happy and healthy) and when we went to meet her, he looked her all up and down and said, "Mama, where's her feeding tube?!"

[MotherWhimsey]

We haven't had much of an issue with the tube either. It was our easiest surgery and he didn't have too much pain. He had a long tube for a month then we switched to the Mic-key button. He pulled that sucker out many many times, but it is really easy to pop right back in. We had to switch to a GJ and have been very careful and it has only been pulled out once.

Really, once you adjust to it, G tubes are very simple. If you will be using a pump, get a Zevex. Call around till you find a HHC company that carries them. It is well worth it. We got sent home from the hospital with a crappy huge monster of a pump and it was miserable till we got a zevex a month later.

Chlorinated water is fine and can actually dry the site out and help with granulation tissue. Granulation is pretty normal at first with the long tube and ours went away permenantly after a few months with the button. He has a long tube now and we haven't had a problem with gran tissue at all. He doesn't usually ooze or anything (stoma buggers happen sometimes). He had one phase where he blew a ton of formula out his stoma, but it's because 1 it was not the tube that worked best for him and 2 his stomach doesn't move much. So he'd blow formula out of his stoma instead of puking. But day to day, we have no ooze or leakage or anything.

Just give yourself grace. It's a learning process but it will all work out eventually. Buttons will probably pop out or malfunction and you'll have to replace it. It's intimidating the first time but after a while it's just so normal and easy that it's no big deal.

[coreybreeze]

Oh man, if you've been dealing with an NG for very long, you are going to find life with a g-tube MUCH simpler. And if you can stomach placing an NG, you can pop in a mic-key no problem.

Here's a tip for you: ask your ped for a few foley catheters. I'm not familiar with a "peg", but with a mic-key, the size will be printed on it (12 Fr, 14 Fr etc...Fr stands for "french" btw). If your kid gets a 12Fr, ask for a 10Fr and an 8Fr foley catheter to take home. That way if you ever get stuck without a tube, you can stick a foley in until you can get one. We have lost a few in the middle of the night and had the stoma begin to close. Living 2 hours from the ER, we were happy to have a smaller size foley to stop it from closing even further.

Its a little bit of a learning curve, but you're going to be just fine!

I second the previous posters recommendation for zevex if you're going to be using a pump. I thought the Kangaroo Joey one was a POS.

[anj_rn]

We had a g-tube place when DD was 4 months old, we changed to the mickey 1 month later. She pulled her tube out, and has pulled out the mickey a couple of times. I have always just popped it back in without a problem. DDs goes right into her tummy, so she gets blenderized food and breast milk through her tube.

We do not have problems with leakage, but one of the sutures holding the tube in place became infected. Once we removed the suture, it healed fine. We can not do the pool because of her trach, but would do it without a problem.

[pixiekisses]

Originally Posted by JSerene

So - can you really go swimming in a chorine pool? Does it ever leak? Has anyone accidentally pulled it out? Does it stay tender for long? Infections? Skin problems? Funny stories? Anything at all, really, you want to say?

It'll be a relief to get rid of that NG, that's for sure. A g-tube (or PEG) is so much easier to deal with.
My little miss cotton ball button has had her g-tube for about 4 years now. A gj-tube since this summer. (Both is mic-key versions.)
It doesn't leak on a regular basis or anything. We use a cloth pad around it a lot, it just seems to keep it from getting red sometimes.
We have had a few incidents with leaks, but nothing regular, as I said.
The PEG didn't get pulled out, we switched to a mic-key button shortly after the PEG placement (a week or so). That will probably vary from hospital to hospital, what the routines are. The g-tube got pulled out a few times, but it's just a simple pop in again so (we always have backup g-tubes, even now). The gj-tube has never been pulled out, yet, and that's good. It takes a hospital trip to put it back in. But we keep extra g-tubes just in case, 'coz then we'd pop a g-tube in on the way to the hospital, the site can close freakishly quickly.
Never had infections, and never had serious skin problems. (Some redness at times, but nothing big, and the cloth pads are good for that as I mentioned.)
It wasn't very sore when she got it, just a few days. But you obv. can't pull on it or anything right after surgery.

We use extensions and syringes that can be screwed together, that works so well. No syringes that pops out of the extension and causes leaks or messes.

We have a g-tube baby like bandgeek, all of the kiddos thinks that's cool to play with (well, not the 11 yo. so much).
We actually got one from the mic-key dealer that came to the hospital with some info stuff on the mic-key.

Good luck!

Originally Posted by bandgeek

My friends all have little boys. So my son mostly plays with boys. When I had DD, she needed a tube of course. Then a met a lady who's DD had the same problems and she also has a tube. DS at that point knew 2 little girls with tubes (and all the boys did not have one). He was about 3, maybe 3 1/2 and one day out of the blue he said, "Mama, boys have penises and girls have feeding tubes". Later, one of my friends had a little girl (happy and healthy) and when we went to meet her, he looked her all up and down and said, "Mama, where's her feeding tube?!"

[Momily]

Originally Posted by bandgeek

My friends all have little boys. So my son mostly plays with boys. When I had DD, she needed a tube of course. Then a met a lady who's DD had the same problems and she also has a tube. DS at that point knew 2 little girls with tubes (and all the boys did not have one). He was about 3, maybe 3 1/2 and one day out of the blue he said, "Mama, boys have penises and girls have feeding tubes". Later, one of my friends had a little girl (happy and healthy) and when we went to meet her, he looked her all up and down and said, "Mama, where's her feeding tube?!"

What a cute story!

My son had only ever seen naked women, he'd also only noticed little boys because the girls at daycare sit own to pee so their "parts" are less visible -- I'm a single mom so he's only been in the woman's locker room at the pool. One day he said to me "Mommy, when I grow big enough to wear a bra, will I still have a penis?" I love the way their minds work at this age.

[mtm]

this is a timely thread for us, my dd has her gtube consult in early Feb. Where did you get your gtube babies, my dd is 21 months old and baby obsessed right now.

[MotherWhimsey]

we made ours with stuffed animals and dolls. We have 3 or 4, and one even has a GJ tube. We just took expired or lightly used tubes and cut a hole into the doll and then popped that sucker in. In stuffed animals I take a clear plastic string and sew the button on (it's fairly easy to poke a needle through the silicone part).

We have a stuffed monkey that has gone through all Linden's surgeries with him (well, except the first few when he was a tiny baby). He has a tube and a line, dafo's, and goes to the hospital whenever Linden does. Child life has been really good on working with him with his monkey and it's been a real help to work through the anxiety.

How old is your dd?

[Kathryn]

Lily has had a g-tube (mic-key) since 4 months, has never had a PEG tube and has had a gj-tube (mic-key) for 14 months.
Her button got pulled out a lot (triplet siblings) when it was just a g-tube and that was easy to just pop back in. Now that it's a gj, we are super careful because it would mean an 1 1/2 hour drive to the hospital to get it re-placed.

She does have some bile leakage from around the stoma, but it's not too bad and we just clean it up with wipes. That is a recent thing though (like last 6-8 months or so), she never used to have leakage. She had granulation tissue until we got a longer tube that supplied more air to her stoma. No infections at all.

The surgery wasn't that bad as we didn't do the fundoplication along with it. She needed pain medication for a couple of days and then tylenol was fine.