Questions for an adult with a g-tube (mic-key)

Hi

I am a mom to a wonderful little guy, named Lakai. He was born seventeen weeks early, an suffered many health issues, surgeries and traumas during his 137 day NICU stay. He had heart surgery to close his PDA and there is a risk with this surgery, of paralyzing the vocal. Which happened to our little guy, he failed numerous feeding studies and had gross aspiration on all textures. He was allowed nothing by mouth, till he passed on honey thick shortly before his first bday.

He is four now and still has his gtube, he has not passed a feeding study yet. But has been drinking water by mouth, without any problems. No one knows why.

I am curious if you can tell me exactly what it feels like to have a gtube? When it hurts? Things you think maybe our son cannot tell us yet?

Thank you!

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Most of the time, having a g tube doesn't hurt at all. Sometimes, if there is leakage around the opening and the skin becomes red, it stings like getting lemon in a paper cut. Calmoseptine was the most effective remedy that I found for that -- really slather it on and reapply frequently, as the stomach acid cuts through it. I assume that you bolus feed your precious little one. If too much goes in too fast, it can cause cramping and be pretty painful. Slow and easy does it. Flushing the tube doesn't hurt at all, and for the most part I think you can assume that Lakai is pretty comfortable with his g tube. Good luck to both of you.
Love and Light, Candace

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My tube does not hurt unless I let material that leaks out solidify; it scratches when I do that. If I forget and drag something across that area I may snag my mic key and cause pain. The dogs like to do that too, with their paws.

I used to use 2 x 2 drain sponges under the mic key to keep things clean. I found a seller on e-bay that sews great little fabric buttons that slip under the mic key and do a great job of keeping things clean. Hand wash and they're ready to go again. I ordered mine with yin-yang pattern plus another set with Christian crosses and fish.

The only bother I have is that I'm always spilling food, making a mess.

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If you haven't heard before, cold fluids poured through the tube can be pretty unpleasant. Direct from the refrigerator is not a good idea. I always microwave the water and formula before pouring. About 30 sec/500 ml is good in the winter, while room temp., without added heat, works better when the weather is hot.

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I agree about cold foods. Sometimes though, on really hot days, I take in some cold fluid. It cools me just as though I drank a coke or cold milk. Very refreshing!

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Jo and I are caregivers for her brother, Duvie. Duvie has been NPO since Oct 8, 2009. He requires watching constantly that he doesn't put anything in his mouth. Duvie is 57 and you would think he would know better, but due to an unrelated auto accident 30
yrs ago, some of his mental skills are not quite back yet.

He has had aspiration pnuemonia several times where they have had to go in, scrape the lungs, and place drainage tubes to
help restore his health. We keep the refridgerator locked with a bicycle lock and the pantry locked for his own good.
As long as he says he wants to live and get better, I will continue to help him fight the temptation to consume by locking things up.

Duvie however does go in the bathroom sometimes and I can hear him drinking water from the sink.
Even though we used to fuss at him for doing so, he seems to be able to handle it.

He does have a trach and I have to place a tube through the trach, down into each lung and suction out any fluids daily.
I haven't been able to quite figure out why his lungs have been able discard water.
Our water is treated by the parish (county) so it kills any harmful bacteria in the water.
It has to go into his lungs because his esophagus is totally collapsed and blocked.

You said, Lakai's vocal cords were paraylized. Have you thought about enrolling you both for learning to communicate through sign language. I'm not sure what would be a good age, but if you think he may never speak, it might be worth looking into.
If he ever does get his vocal cords working again later in life with new medical improvements, it still will be worth knowing sign language.

Lakai's A Great Looking Little Man
Errol

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