Posted By Posting
Mar 21, 2011
jean9
gtube care & pacifier/binkis
Hello again. My dd Libby had her MicKey gtube placed in Nov. and we've found with the drainage, etc. she does better with a split gauze square. I've attempted to sew my own "button buddes" (cloth pads for site), but they won't come totally clean in the laundry. Does anyone have safe suggestions? How do you launder them? Do you have to soak them first? In what? Also, while Libby's almost 4 she still uses a binki when sleeping and riding in vehicles. And now with bolus tube feeding as well. She really seems to need the sucking to keep swallowing and 'keep things moving in the right direction.' She has GER and will vomit more frequently without the binki use. So, what I'm asking is... Any suggestions on other (less babyish) "sucking options" to try to switch to? Many professionals have encouraged pacifier use with tube feeding... THANKS!
Mar 22, 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
We didn't have any drainage with Jedd's G tube at all. Are you sure it's really drainage and not just from having gauze on it all the time. Most of the G tube kids I know do best with a dry site with nothing on it at all.

For us, any gauze on it would tug at the site and cause the stoma to try and heal which is that drainage I think you are talking about.....I think. We never had anything "leak" from Jedd's site though....so I'm slightly stumped.

most of the time if you are having leaking it's due to the tube being the wrong size. Does it seem really loose? Since you have a MicKey, has the anti reflux valve blown yet? That can cause the site to be really moist.

The Moms I do know that use G tube pads just wash them like you would diapers or just in the regular wash, it depends on how and what they are made of.

As far as the pacifier, as long as she isn't taking anything orally and all her formula is going into the tube, I'd continue with it. It provides stimulation she otherwise is not getting. Do you have any oral stimulation tools you can use? For example, they make Nuk Brushes she can chew on as well as Chewy Tubes and Ps and Qs tubes, some of them are even scented. They also make vibrating oral stim toys too!!! Jedd loved those kinds!!

His ultimate favorite was the Z-Vibe!!! It is a fantastic oral motor stim tool!!! It's pricey though, just to warn you. Early Intervention bought us tons of stuff!!!

Mar 22, 2011
jean9
thanks jeddsmommy
thanks for replying. i realize my issues aren't as serious as some others...

anyhow, there's drainage from around the stoma even without gauze. It's not a ton, but enough to get dry and crusty all around it and get on her clothes. There's gran. tissue leftover just underneath the button, but it is no longer growing.

Yes the anti reflux valve is blown. Our 1st button did within 1 month and this 2nd one maybe sooner, but we're just letting it be. It only leaks after a bolus feeding when you remove the extension.

Don't think it's too loose.

She does eat and drink orally. So we expect that at start of meal, and then when she slows down/stops orally, we switch to bolus to make up the calories. She gets her binky then.

Mar 22, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am no help with the gtube but since she is taking the bink when you are bolusing, could you do a sucker instead. I know.. I know.. sugar but hey, no bink and extra calories. After you get her off the binks during buloses then you could work on the other times. Just a thought..
Mar 23, 2011
bellysmom
gtube care
Hi! We had major drainage for awhile we are vetrans with it now going on about 5 years. I can suggest Ilex cream and the other is Triamcinolone cream or Bactroban cream. When gtube was first placed she had drainage so bad it gave her 2nd degree burns pretty mich her entire belly. We had to ng then nj so on so on. Major issues but if a gtube could look pretty hers sure does. Unfortunately it was time. Air does wonders and a blowdryer. Sometimes you may have to go back to g with a yport or jg. We had to do all of the above to give her time to heal. Does your daughter have DGE because that may play a role also. Good luck!!!! As for the pacifier let her go she needs comfrt somewhere. Just had a thought have u tried to slow the feeds?
Check with your
doctor first!