BethU, PEG news?

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rose

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Hey Beth, what did you find out at your gastro appointment today?
 

BethU

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Thanks for asking, Rose.

My gastro guy generally has a personality like House ... one of my lifetime goals has been to make him smile before I croak, and I achieved it today. He loved my Light/Writer, and was downright cordial ... and CARING ! I think the diagnosed of ALS softened him up. When we left, he said to us, "Please keep your spirits up, you two" which I thought was nice.

Anyway: Feeding tube is OK. He said "When do you want it," and I said "Hit me with a brick and do it now." No, actually I typed "ASAP". He's trying to get it for first thing next week. He explained the procedure ... said it takes about 15 minutes ... and they do minimally invasive cutting. Alas, they are guided by putting a tube down your throat. At UCLA, they put you on some kind of x-ray table or something. I don't know if I should warn him about what happens when you put ANYTHING in my mouth ... buckets and geysers of thick saliva ... or let him be surprised.

Anyway, he said it's a 99.9% guarantee that nothing will go wrong. (I've heard that before ... ) Might possibly be a problem with bleeding, or infection, but most unlikely. He is most concerned about my heart disease ... He and I did have an adventure together with my last colonoscopy a year ago (before ALS diagnosed) when they administered too much fluid and it threw me into cardiac arrest and a wild ambulance ride to the nearest ER, where I had to wait until I'd peed it all out, at which time I was fine again. :roll:

Anyway, it will be soon. He showed me where it would go and what it would look like ... kinda like a curly piggy tail.

So, maybe, soon, this swallowing nuttiness will be a thing of the past! My BiPap is "in the mail". Now if only I could get my DynaVoxVmax to work ... or just shut off! It currently has a gray screen with white letters (like an old Dos computer) saying, "Operating System not found." Before that for two days, I had the Windows meadow screen but with no menus or responses whatsoever. I cannot turn it off ... I have disconnected every cable and line to it, and pushed the power button with all my might, including the use of tools ... unfortunately, I had charged its battery, so I'll just have to wait for it to run down. Or find a sledgehammer.

One thing you can say about ALS, it keeps your mind occupied. (Actually, there are a couple things you can say about ALS, but this is a family-oriented forum. :))
 
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crystalkk

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Beth,

Good luck with the peg, and I hope your bi-bap arrives soon.
Since when did the family -oriented forum stop you from saying what was on your mind. (LOL)
 

rose

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OK, BiPAP arriving minus a respiratory therapist to set you up? I hope this is just an expression and not the true status of where you stand with it. (I'm begging you!)

Re: the PEG. That is encouraging, not only that you can get it so quickly, but that you had success in winning Dr cranky over! (if anyone could, it would be you) Is your niece going to be around to help?

Did the doctor show you where it will be inserted? Is it over on the side or in the middle? Is there a choice of insertion places?
I don't know what to say about your dynavox, maybe the MDA local chapter can get you one that works (?)

Why are so many things hard?! But, if the dark forces are out to get YOU down, they've got a rude awakening.

Keep us posted, don't just disappear for your surgery and not tell us. (hugs)!
 

bluebottle

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Help Peg pain

Sorry to hijack the thread but I have developed awful pain, like indigestion under the ribs and feeling sick. Any ideas? Had peg for a couple of months now and not experienced anything like this before. I keep having trouble with evacuating as well and had an enema (sorry about the detail) 12 hours ago.
 

brendapals

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Hey there BethU,

Sounds like a great visit with "house". I'm glad you got him to smile. Usually the peg "pig tail" in about 2 inches above the belly button. That's if my memory is thinking correctly, it's been 2 yrs since I took care of patients with them.

I feel positive you will do just fine, keep us posted,
talk to you soon,
hugs,
brenda

OOPS-and bluebottle,
Please remember, we cannot diagnose on this forum, you need to call your physician and let him/her know what's going on, no bowel movement for 12 hrs can develop into a multitude of problems. CALL YOUR DOCTOR NOW and do what he/she recommends.
take good care,
brenda
 

BethU

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Rose ... he said it goes on the left side and indicated a vague spot on his torso. It will be a clear plastic small tube (I had envisioned something like a garden hose!), which they curl around and tape to your skin. What he showed was about 6 inches long.

Crystal ... well, er, uh, hmmmm ... let me think on that for a while, and get back to you. :roll:

bluebottle: I agree ... please check with your MD about this asap!

Brenda: Thx for the encouragement!

The Lord: THANK YOU! The Dynavox just shut off! Good work, as always!
 

Zaphoon

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Beth,

Good to know your swallowing trubs will be a thing of the past.

I vote for a bright, yellow, flourescent tube that glows in the dark and could be used as an emergency glow stick.

Zaphoon
 

BethU

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Kim: I like it, I like it ... but we do have to work in the pirate motif. (How do I make a pirate with a patch smiley?)
 

kelly

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Hi Beth,
Glad that your Doctor was compassionate. I know that the whole idea of a feeding tube is daunting. I know my husband has actually been relieved since it was put in a month ago. He is doing about 4 cans of formula a day with lots of much needed water! He is still eating by mouth..but not as much pressure. I know in the hospital it was important for insurance purposes for the dietician or Doctor to write that you are not taking any food by mouth so that they will pay for the formula. We had our one month check up yesterday and the Doctor was pleased with how well everything healed. I am handling the care for my hubby and it is really easy. The ALs center near us has a little pocket with a ribbon that they gave to us so that we would not have to continually tape the tube (hurts for a hairy guy). We asked the Doctor yesterday about the button..rather than the hose..may have that done in the summer. I guess they can change it right in the office. ANyways, hope you have a great night. Fondly, Kelly
 

BethU

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Kelly, thank you so much for the information. That is very reassuring ! I, too, am just dying to drink some water. Despite my thick "milkshakes" I feel totally dehydrated, but every time I swallow a liquid, it comes out my nose, or regurgitates. I tried to sneak some OJ past my brain last night by "drinking" it with a spoon, and it worked ... but took forever!

Rose ... yeah, it appears that they are going to mail me the BiPap in a box. At least my neuro is not far, so I can pull my old, "I'll just sit here in your waiting room glaring at your receptionist till you see me," bit. :-D
 

Zaphoon

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Beth,

I popped in on my neuro and did the glare thing. The receptionist, to my dismay, had a more sinister glare than I could ever hope to muster. I did leave with the papers I came in for, though and even complimented the receptionist.

Zaphoon
 

BethU

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That's great. Mixed signals (glare/compliment) drive 'em crazy. You gotta stay on the offensive. (And, boy, can I be offensive! :))
 

rose

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Beth,

I've got to say that if you were a man, you could be Alec Guinness and the character he played as George Smiley in Tinker, Tailor, Soldier, Spy. (although you're funnier).

I'm not happy to learn that your bipap truly is coming to you through the mail. Even if it has been set up to the correct pressures, have you been fitted with the proper mask? (huge for success). This just isn't right. :-(

Re: your PEG, keep us posted, I'm hoping it will make your daily living much easier. (and you can still have your fab milkshakes, even if it takes using a spoon). I don't have any inspiration yet as to what decorative approach you can take with it, but feel certain you'll come up with something :cool:
 

CindyM

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Rose- you mean like smiley stickys on the tube? If any one will come up with an idea, it will be Beth! :smile:
 
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