Old 09-17-2009, 12:48 PM #1 (permalink)
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Default Questions to GI specialist RE: feeding tube?

Following my post asking for the "positives" of having a feeding tube, Dad has agreed to the procedure which will be September 23. Because his swallowing is quite poor, he was given the earliest available time.

We have a consultation appointment tomorrow and I was told to bring questions. The ALS Association and you all have prepared me well! I'm at a loss for probing questions!

Is there anything you wish you had asked in advance of the procedure?

I hope so much that his stress level will lessen after the procedure. He's wildly unhappy these days as his symptoms seem to be progressing quickly.

Thanks all!
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Old 09-17-2009, 05:41 PM #2 (permalink)
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Default Re: Questions to GI specialist RE: feeding tube?

Lisa,
My dad just had his consultation appointment about getting a feeding tube today at The Ohio State University and we hope to have an appointment made for it to be put in within the next couple of weeks. ( There *was an appointment available next week but I think that was a bit "too fast" and overwhelming for them, so we'll see what is finally set up! ) One of my sisters was able to go along to today's appointment. She asked whether Mom and Dad could get some nutritional counseling. ( The doc said yes, of course. ) I think this would be a good idea for anyone to ask about. ( My mom wondered whether she could just put Dad's biggest pill right into the tube! LOL Doc said no! ) What to put into the feeding tube, how much, how often, and the *best stuff to use to give the most nutrition, is something my mom ( since she will be preparing the food ) needs to learn about because this is all so new and a bit overwhelming.

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Old 09-17-2009, 07:08 PM #3 (permalink)
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Default Re: Questions to GI specialist RE: feeding tube?

Well...
I had my GI consult two days ago. The dr was great! Explained the procedure to my hubby and me and our 8 yr.
I did not realize I would be getting the peg by way of endoscopy...now I know!

He said he would like for me to see a nutritionist sometime next week. They talk about what formula, supplements, etc. It may be easier since I am a nurse,but I didn't schedule it yet.

He thought my 30lb wt loss since Feb was too much...I told him I had plenty more I could lose!

Best wishes to all,
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Old 10-04-2009, 11:48 PM #4 (permalink)
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Default Re: Questions to GI specialist RE: feeding tube?

My PAL had one placed a year ago.. and as most will say.. He had wished he had gotten it sooner. I procedure was no different than a simple colonoscopy in that he went to sleep woke up with it in place. It took no time to make it part of the "norm" of the day. He is on a 500 cal a can and he quickly figured out, that the slower he fed through the tube, the better he felt. Otherwise, he would feel nausea. The "PEG" has maintained his wt since. We cannot say enough about the benefits of this. We travel alot and he likes to get into a pool. Most recently in Las Vegas ( where they actually had a poolside lift waiting there for him) I placed a bandage called an opsite to keep the tube/site water tight.
Next month he will have his button (different type than he has now) so that it will be easier without the outer tube hanging/not as visible .. and easier for his water walks.

Good luck. I am sure everything will be only better once it's in and gaining/maintaining wt.
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