Feeding Tube

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jayswife

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The past week has been rough he seems to have declined. His speech is almost gone . I had to translate for him at the doctor on Monday. Luckily his eye gaze computer should be here next week. Since last week he's started sleeping so much more during the day. Better than he sleeps at night. The doctor is starting him on pain pills. He's reluctant to take them but he's in so much he said he'll give it a try. Because of the weight loss, difficulty eating, and he gets tired eating so he stops not because he's full, he's decided to go with the feeding tube. I'm nervous and have no idea what to expect.
 

Narrowminded

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My DH got his PEG tube when they did his vent. It was fairly easy, just a little localized pain for a day or two. Once he has it, eating will be so much easier as you will feed him and give him his meds through the tube. He will gain weight or at least stop losing. Mine gained. It may seem scary at first, but it's not. You'll have it down very quickly. Hugs and Prayers.

Sue
 

Diane H

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My experience with a feeding tube has been positive. Please read the information on my website, ALS From Both Sides to learn about feeding tube procedures, types of tubes, home care, and problem solving, and more.
 

affected

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One thing I will say is they are an absolute snap to use.

Truly, it's not icky, and after a few times doing it you will realise how simple it is, even a 4 year old can help ;)
 

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Kaiull

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Young Adult here! My dad has had his PEG tube for roughly a year now and don't worry too much as it will make getting nutritions and medications for him a lot easier to handle. It does seem scary at first but once it's implemented it you'll see that its not to hard to keep up with regularly and will help out a lot in the long run!
 

GilWest

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One thing I will say is they are an absolute snap to use.

Truly, it's not icky, and after a few times doing it you will realise how simple it is, even a 4 year old can help ;)
YES! It has always bothered me when people are told they have to hire an RN to "manage the feeding tube"...or vent. Sucks to think how much time I lost worrying about that. I will be forever grateful to our local Select Specialty Hospital for training us and showing us that it can be done. Still would never opt for a vent except in extremely rare instances...

Feeding tubes are a snap to change, also...as are tracheostomy tubes...
 

affected

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The reason our gastro and I together decided on the bard rather than mic key was because the bard has a hard bumper inside rather than balloon. With Chris's rapid progression, we knew one bard would see him through, and no risk of the balloon deteriorating or losing pressure.

Saying that, I don't mean that all PALS should go for the bard, just saying that was our reason for the choice. Chris passed away 4 months after the bard was placed.
 

sweetmozart

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It's a good thing. My husband put up a lot of resistance to getting one. Each meal was taking 1 1/2 hours to feed, but it was when he started dropping weight that he finally agreed (with doctors) to go ahead.

He just barely made the thirty percent fvc that he needed in order to be approved for the placement surgery.

He chose mic key. He's had to have it replaced, because of the balloon deteriorating, three times. The mic keys usually last a year, give or take. Each time we have to drive to downtown Boston to have it done. None of the hospitals or doctors around here will touch it. In fact, he's almost ready for another replacement. So that is something to consider.

I've seen youtube videos of family members changing the mic key, but the doctors tell me not to do it.

I agree with the other posters that it is very easy to use.

Anyway, you both will be very glad once it's done. Good luck!
 

GregK

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Fwiw, the 'danglers', the tubes without the inner ballon, can last for several years.
 

Ells

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Sweetmozart.

Such a shame nobody will talk you through how to change the MicKey. It really is straightforward and isn't difficult. Yes, the videos are good but, if you can see the doctor changing it too the next time your husband has the MicKey changed, you will be able to do it!

I'm not sure if this is OK in the US, between doctors missing out on money or fear of litigation, but that is how my husband learned, by watching.
It saves a tiresome and tiring hospital trip.
 

Jocalyn8

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Hi gang,

I am thinking about the feeding tube. I am still able to eat but I get so tired I eat very little. I am down 5 lbs this summer. I am a gourmet chef and I am finding it hard to let go of that part of my life. I also go in my pool every day for pt. is that still allowed?
Everyday it seems a little piece of me is being ripped away from me. This disease is so cruel.
 

gooseberry

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Steve had his button mic key for 18 months. It wasnt ever changed.
 

Narrowminded

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Brian has a button by Boston Scientific. It's not a typical MicKey. I have no idea what the correct name is, but he's had it for 6 years next month.

sue
 
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