for oral eaters w/trach or recent decan

[angelbaby]

just curious, not that we are getting decan anytime soon, and we have oral eating issues, so we really don't eat orally, mostly a few bites of puree here and there as of late, he wants to eat, but it is hard to tell how safe it is, we have had nurmerous swallow studies, but my real question is how many of your kids eat orally and do they eat w/ the passy or capped? we only eat capped, so if/ when we ever became decan and we were eating i am thinking we need still put something there to plug the hole for pressure reasons and not sure how sanitary him putting his finger there would be, so what do some you guys do? just wondering.....

mom to 4 yr old CHargEr, trach, gbutton, fundo

[faywrayy]

Kate eats orally, and is still trached. She can eat without the PMV or with it. We don't have a cap...yet. She's only had one swallow study, which she passed. To our knowledge, she's never aspirated formula, and I've never seen food come through the trach either.

Mind you, oral eating continues to be a challenge, but it's mainly behavioral now...

[mylesmom]

Myles eats everything orally. He's 8.5 months and we are eating solids but that is a challenge. He is suspicious of anything other than a bottle that goes in his mouth (everything except what HE puts in himself).......I think it's because of all the meds he's been given by mouth and everything else he'sbeen through. He eats great by bottle, no problems at all!

[Hope]

Shelby's always been an oral eater, at least since she came home at about 5 months old. With the trach, capped (never had a PMV), and now decanned. Eating, like with Kate, is still an issue, and I think behavioral, too. I think these trach babies miss so many oral (both eating and language) passages/milestones that most babies pass through -- either because of hospitalization or other issues that cause delays, that it takes a while for them to catch up.

Gagging was definately an issue at the very beginning when we began introducing solids. Our speech therapist worked with her, too. Mainly we took it really slow and didn't push. In fact I had to tell the therapist to back off at one point because Shelby became almost fearful of eating. She does better now, but she's a VERY picky eater, but maybe that's because she's a two-year-old!

Hope

[LKN]

Nathan is still trached and has always eaten orally. We have had numerous swallow studies and he doesn't aspirate. We are having a FEES in June to map the swallow. No one expects to find anything wrong.

He can eat and drink with his Passy and has never had a problem with it--no gagging, no choking. He is not capped so I have no experience with that yet.

[angelbaby]

we cap for eating, speech and sometimes whenever he feels like being capped, he doesn't tolerate the passy well, it dries him out to much.

i guess what i am trying to figure out is, if the child needs to be capped or wear the passy for safe oral eating, how will it work once decanned? i know most kids will have a open stoma for at least a few months, our st said if we ever cross that bridge he'd more than likely have to plug it with his finger and i know our ent said she wouldn't close the stoma for at least 6months to a yr. decan may happen in the next few yrs and i don't know if our oral eating skills will be strong enough then, but i still would be interested in how other have done it. i am also curious about eating with or without passy/cap have you noticed a difference in the swallow, stronger swallow and/or endurance. not much info out there, i know passy advertises better swallow with the passy, i know it mostly depends on the childs airway issue to begin with. thanks for your replies

[Hope]

i guess what i am trying to figure out is, if the child needs to be capped or wear the passy for safe oral eating, how will it work once decanned?

Shelby was decanned a month ago and nothing has changed -- good or bad -- in regards to her feeding/eating issues. I keep her stoma covered just about all the time, especially when she's eating. And when I say "covered" I mean anything from a simple Band-Aid that was kind of "open" to Tegaderm/DuoDerm that seems to completely "seal" the stoma. No difference either way in terms of eating. When I change the bandage, I let her run around a little uncovered, because sometimes her skin is pink and I want to see if it goes away pretty quick (it does). But otherwise I keep her stoma covered and try to keep little fingers out of it. Hope this helps.

Hope

[NM_momof3]

Gabby eats orally she wears her HME while eating and does not yet have a passy. She does well and has passed 2 swallow studies.

Isabel

[debvec]

Amanda has always eaten orally, she can do it capped, uncapped with pmv, without the pmv, and she ate orally when decannulated with all kinds of air leaking out her stoma. She just EATS!!! and loves it. That was our biggest fear with surgery, risk of aspiration, but since the surgery on Friday she is doing just fine.

Amanda's mom, deb.

[cariaad]

Allison can eat whenever she is willing to-lately it is 'nanas (bananas) and dill pickles (not together)! She eats the same capped, pmv or open trach. When she was decanned it seemed like it was actually harder for her to coordinate her swallowing. Deb