Posted By Posting
Jun 30, 2011
kml723
Jessica (Jedd's mom) PEG to button
HI Jessica, I just had a few questions for you regarding my son's G tube. He's had a PEG for 6 months and we are looking to change it to a Mickey but had some questions...

When you give meds, I believe you had mentioned you can give them directly into the mickey rather than hooking up tubing-is this true and can you also give a feed like so?? With the PEG, if he's asleep it's just so easy to attach the tubing to his PEG tube without waking him and if he had a mickey then I'd have to undress him to get to the button and therefore risk waking him up. You know what I mean?

I was also wondering how you dress the kiddos (strange question I know) but with a PEG we have Liam wearing onesies (he's a year old) to help keep him from pulling on it. My worry with a mickey is that he could pull at the button and if for whatever reason it's not fully inflated-he could pull it out. Has that ever happened to you?

How does the extension tubing work? Is it easy? A hassle? Does it kink easily?

Any trouble with granulation tissue? Liam gets some with his PEG but it's (so far) been fairly manageable.

Also, in a previous post I think you mentioned that solids seemed to worsen Jedd's reflux? We had been doing 1 oral feed with Liam a day which was going really well and then we tried 2 oral feeds and about a week after that he had a pretty good flare up with his reflux (his vomiting returned some) and I don't know if it's related to an increase in solids-which I know isn't the conventional thinking and that one usually thinks that solids help reflux-or it may be teething related. He used to eat a 4 oz jar plus 2 T oatmeal mixed and now he eats half that and just plays with the rest. Granted, he still gets the calories he needs thru the tube so maybe hunger isn't an issue but his nutritionist seems to think he should still be able to eat like he used to. Your experiences?? Thoughts??

Thank you so much in advance, Kathy

Jun 30, 2011
bellysmom
hi this is isabellas mom we have had a mickey for about 4 1/2 years we had a nissen placed with gtube then j then gj and too many other trials of ng and nj starting at 15 months at we are almost seven now. the mickey is so much better i do give reglan and seizure meds without extension because they are liquids and she aspirates but i always flush with a few mls of water I do gravity feeds with the extension and a 60 ml syringe. i always taped the extension to the underneath of bells shirt and then to her pants and then taped extension to bag because of leaks. it was a hassle at first and a big production but then it just becomes routine. the other option is to have all set up and just plug in extension to mickey when its time. there is a med port in the extension warning always make sure ports are closed before you prime. there is alsoa venting tube with each mickey we still need to vent periodically which helps her a lot . the extension can kink which is why im a taping queen because of occlusion. we all hear that beep even when its not beeping. as for granulation which we had a lot then a little then a lot we switched between ilex, bactroban, and kenalog creams. as for feeds we couldnt do gravity feeds for a long time and still can only do about 6ozs at a time. you may try smaller more frequent feeds by mouth even for just the sole purpose of not developing oral aversion
Jun 30, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
First off, make sure they sedate or have them do G.A. for the switch. Some hospitals will actually yank the old tube and then put in the MicKey, mean isn't it!! Jedd's was a straight insertion so we never had a long tube.

Ok meds, yes you can do meds straight into the button. We used a slip tip BD brand syringe and it fit. NONE Of the other syringes we used would fit. It has to be a slip tip and be that brand. There may be another brand out there that will fit, but that's what our HHC carried.

Oh and the oral slip tips from pharmacies will not fit.

I just gave them med then flushed the MicKey. We used about 3CCs of water, some Moms will use 10.

As far as giving a feed straight through the button, you can and I have...LOL I used to tube with a 10Cc syringe of baby food into his tube during the day. I had to push really really hard but, for the first time in his life, he started to GAIN weight!!! The local feeding clinic thought I was nuts, other Moms thought I was normal!! It enabled me to boost his food and the food was thicker so we saw much less vomiting.

If Jedd was about to fall asleep an I knew I needed to bolus him, I would just attach the extension and then tape it up and out of the way just far enough for me to be able to still get to it.

I would attach it, then give the line some slack, and then tape it to his belly and then tape it towards the back. It used to hang out some but Jedd never bothered with it.

If I didn't need to feed him during nap, I never had the extension on.

As far as pulling out the button, Jedd only did that once. He liked sleeping with just his pull up on and he yanked it out at nap and we didn't catch it until we woke him up. We rushed him to the ER since I could not for the life of me get a new on it. I even tried to stick something inside the MicKey to make it stiff and I could not find anything that would fit.

The ER had NO idea what to do with us, the resident that is...he kept telling me we were going to need to go to the OR to get a new one placed. I kept telling him NO we would not. By that time they had a foley (half the size of his G tube though) placed in the stoma to keep it open some.

I kept telling him that we needed to stretch him stoma and then get the new tube back in. He kept telling me I was wrong....how dare he tell me that...LMBO!!

He ended up calling the surgeon on call *on a sunday afternoon no less* who told him exactly what I told him. He looked as if the on call surgeon had skinned him alive too. I didn't spare the laughs at him.....LOL I just had to laugh and grin at him.

They sent us home, no feeds allowed, which would have been fine IMHO and we had an early morning apt with the surgeon's NP.

She used a wooden hospital Q tip and inserted it inside the MicKey and the we lubed Jedd's site up really well and the tube really well and with straight steady direct pressure, about 20 seconds and LOTS of Jedd screaming later, IN the tube went with a POP!! NO damage at all, worked like a charm.

The extension tubing works great. Make sure you get some "Secure Lok Right Angle Bolus" extensions. They have NO med port and if you get it in a 24 inches, they work GREAT for night feeds. There won't be any accidental feeding of the bed with those suckers. they are awesome.

We didn't see any kinking with them once I learned how to tape it well. I used to attach the extension, then give it slack and tape it once to Jedd's belly. Then, I gave it some more slack and then taped it to his upper thigh and ran it out the end of his footed jammies.

Of course, you have to feed the extension through the PJs first or it won't work. I just used scissors to cut a very small hole at both ankles so that I could do this. The hole never "ran" in the wash and you can't even tell there is a hole there. I made them as small as possible.

When Jedd was tube feeding we used footed Pjs exclusively to help. 2 pieces were out for us, it was just too much of a risk that Jedd would yank it out.

Once I mastered taping with enough slack, I never had *no flow* alarms from the pump for kinks.

Jun 30, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
As far as Granulation Tissue (GT) We only saw that when his tube was "new". We used a steroid cream and gave it plenty of air, we didn't ever use split gauze. It can trap moisture and cause the GT to grow worse.

To lessen GT try to stabilize the extension as much as possible. The more the tube and extension get pulled on, the more the tissue will grow.

Jedd's issue were also worse because he had a dissolvable stitch that decided to navigate it's way into his Stoma tract irritating the tract.

His GT was soo bad that I asked if they could switch his tube out to a new one earlier then the 2 month wait after having it placed. I wanted them to be able to use silver nitrate on his tract if needed, then put the new tube in.

Sure enough, a black thread like thing was in his tract and sure enough it was an internal stitch that didn't dissolve and made its way out.

I think that was the root of his GT issues because after that it was fantastic!!

Solids really did bother Jedd at the early ages. Like when I first tried them orally at 16 weeks old. The only thing that really didn't bother him and he would actually eat, was green beans. Soon, he stopped taking those.

Around 14 months old I started putting food in his tube and he had issues with tomato based stuff and food with apple in it. Any baby food that he those on the label I tried to avoid and he was happy.

So, yes, food really can bother them.

Have you increased tube feeds and that may be why Liam doesn't want them?

With Jedd once he started to take food orally, I tried to cut back on his tube feeds. It was a hard balance and one that took years, literally.

If I could get him to take 1 ounce an hour orally for 3 hours straight, then I did't tube feed. That meant quite literally, I was giving him formula orally 1 ounce per hour every hour of the day from 8:00 until around 8:00 at night and then his night feed started at 8:30 and went till 6:30 a.m. and we got up and did it all over again.

After tolerating that for a while, I move him to 2 ounce feeds every two hours, then to 3 ounce feeds every three hours and so forth...it was a L-O-N-G process to say the least.

Jun 30, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Oh and I also used to crush a half of tablet of a multivitamin with the end of a butter knife and then undo a syringe. I would then carefully pour the powder into the syringe and put the plunger back in.

Then I would pull up about 8ccs of water into the 10cc syringe and then pull up the 2ccs with air, then shake it up. Make sure to put your finger on the end, until I looked pretty good.

I could then put his multivitamin into his button. Worked like a charm.

You may be able to do Prevacid this way, if he uses that med.

Check with your
doctor first!