Question about MicKey/PEG tube

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anderkling

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273
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PALS
Diagnosis
01/2015
Country
CA
State
B.C.
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Surrey
The surgeon who inserted the PEG tube will be replacing it (at my request) with a MicKey. He's never done a MicKey tube before, but I trust his surgical skills. My question is this: He says that he will do the procedure without any anesthesia (because a local would not go deep enough and be ineffective), and that it will really hurt. (I will take oral painkillers.). Is this common practice? Will the pain be extreme? I'm just wondering whether the procedure will be worth it in the end. Thank you for helping me figure this out.
Charlene
 
my wife had this done. The Doc popped the G-tube out in the office. It took 5 seconds. She said it really was over so fast that it did not hurt. They stick the Mic-Key in and inflate the donut with water and the whole thing last about 5 minutes and you are out of there. She has had the Mic-key replace once after 6 months use and that was even easier. Good luck, the anticipation is the hardest part of the whole thing.
 
Charlene,

Why are you wanting to switch? I'm probably really really biased because I had a horrible experience with my PEG and it absolutely sped up my progression. My advice, unless your current peg tube isn't working for some reason, don't do it. I think any kind of trauma is bad for our progression. Having to be on painkillers can steal your appetite and cause constipation. At this stage I believe we need as much of a normal routine as possible.

Vince
 
If you currently have a PEG tube with an inflated balloon holding it in your stomach it will not be painful. He can deflate the balloon and the tube will slide out. If you have your original tube it may be one with a bumper inside that he will pull out through the track of the tube to your stoma. That will hurt but I can't say how badly. When my first tube was replaced I was on a blood thinner so I was put under briefly so they could put an endoscopic tube down my throat and remove it that way, then place one with a balloon (deflated for the insertion) through the stoma and track to my stomach. The good news is that if he replaces your tube with a balloon type, any future changes will be painless.

The Mic-Key tube is the same as any with a balloon, just with a shorter length of tubing. For feedings you open the cap and add an adapter which is simply and additional length of tubing for easier pouring in the feeding. The advantage of a Mic-Key is not having a length of tubing outside. The disadvantage is having to use the adapter for feedings. That is all the difference!
 
when Steve had his replaced due to an incident it was 10 days after the original procedure. He was fine but they gave him versed and knocked him out. He had a 30 min nap and was ready to go. He walked into the house and didnt need any meds.
 
My Chris elected to be knocked out again for the button to be placed, but they were great with him doing this so he felt he trusted them.

The buttons do make life so much easier as there is no tube to be careful of not pulling, you can easily do water exercise if you are doing that, and the tubing can be kept so clean because you detach after the feed and clean it.

As said, the original tubing is more difficult to remove and could be painful for that few minutes, so I would say it depends on your pain threshold, how you feel about being awake, and how you feel about a light anaesthetic. They don't give you a full general knock out like they would to do a long surgical procedure.
 
I appreciate all the replies. It's wonderful to be able to turn to the forum community for answers. Diane, it's the original tube, and he told me it would hurt. Vince, I appreciate all you wrote. The reason for the switch is because my PEG is unusually long and clunky! It is a nuisance, gets caught on clothes, can't get wet, which makes showers unwieldy. If it's a simply procedure, why not? Money isn't an issue because it's covered by our health care system. I had a similar experience to yours, Vince, in that the PEG tube surgery seemed to accelerate my progression. But this procedure is minor in comparison. Still, I'm hesitant.
Charlene
 
Can't get wet?

I shower with mine ...
 
I'm also interested in the can't get wet comment. Giving it a good cleaning in the shower was an important part of the care for us. After the shower I would then douse it with salt water, then put a barrier cream on his skin around it, just a little bit being careful not to cover the stoma in cream.

I mentioned water exercises because it would be difficult to secure the long tube well to try and achieve lots of movement, rather than a problem with it getting wet.
 
Hi Charlene,

I opted for a light sedation when my bumper-retained tube was replaced with the MicKey button, simply because the doc said it would hurt and the more I tensed up with pain, the more it’d hurt.
It is a very quick procedure, so you won’t be out for long. Then, changing the MicKey at home is simple, quick and painless.
I’m really glad I switched, it suits me much better.

Ells.
 
Love the exchange of info here and the evidence of love and compassion. Super people, I have arrived with questions about feeding tube here or there. I have been told by my Neurologist that I have three options to choose from to die, starvation, choking or asphyxiation, not all thrilling topics I had not thought of yet. But a G-Tube or Button was mentioned to slow the starvation down. MicKey looks like the choice hands down. OK I can eat almost all I wish, just have to chew it carefully and swallow it, which I do without all too many problems (occasional choking), but I am losing weight, about 2 lbs. over a 10 day span, and have been for the last 4 months, I am eating calories like they are going out of style.

So here to the question, I have sorted out which type, timing is now the next step, as I can still chew and swallow without great problems why a button now. I guess the nut of it all is if I go button do l lose my swallowing quicker, as I feed more with the button. Understand the point I am aiming at. Thanks again for you answers and most of all your concern, Be blessed as I am blessed for being here.
 
Earlier is better. The longer you wait the more dangerous the surgery. If you are losing weight and you want a feeding tube at some point do it before you are too weak, your breathing is weak and your gastrointestinal system has slowed down because it is not getting enough nourishment. You can still eat for pleasure but 2 pounds in 10 days says you need it now. It is only going to get worse
 
Osiyo,

Get the PEG done before you need it done. The stronger you are having the procedure, the easier your recovery. Outcomes from having it done in an emergency are not always good.
You mightn't use it for a while, but it's there for when you need it.

I still eat some food, but get most calories and 90% of fluids through the PEG. It has contributed significantly to my well-being.

Ells - proud wearer of a MicKey button since 2008.
 
@Nikki J @Ells, Super, cornered the rascal and got it so to say. Ok, I will have it done at the earliest possible date, and I will start out with the MicKey button. I fear nothing except the unknown. Be blessed as you're answers are precise and that is what I was looking for.
 
Hopefully the doctor who puts in your tube will let you start out with the Mic-Key. For some reason they seem to want to start with a tube with a bumper rather than a balloon, then change to a balloon type later. I don't know why. Anyway, you will get your Mic-Key fairly soon. There is no difference between the Mic-Key and a standard balloon type on the inside, just the length of the tube on the outside, so going from one to the other is no big deal. It sure would be nice if we could start out with the one we want though. Hopefully it is just a matter of time as doctors accept balloon tubes as first tubes.
 
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