Peg tube placement - inside out.

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Tomswife

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Lost a loved one
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08/2022
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Livingston
Tom is scheduled for his PEG tube November 23. Because he has bulbar weakness he cannot recline more than 60 degrees. Therefore the typical way the tube is placed "outside in " will not be used.
His procedure will be done at the Center for Digestive Disease. He will be placed under general anesthesia, twilight. The tube will be placed through his esophagus and then pulled through the stomach wall. What I am calling "inside out". I have googled and cannot find a description of this procedure, mostly I think because it is not typically done this way.
We learned at clinic that Tom does not have respiratory weakness. His breathing is in the normal range. He has bulbar weakness. And it seems his neck organs/muscles collapse when he reclines (thanks gravity) and that is why he cannot breathe.
It would be helpful to me if anyone is familiar with this procedure. I am told it is called Peg via GI. And, I can just trust the doctors and see Tom in the recovery room.
 
Tom is having a PEG - percutaneous endoscopic gastrostromy. if you google that you will find lots of info.

The other way the feeding tubes are placed is a RIG - radiographically inserted gastrostomy.

My Chris, bulbar onset, had his placed this way. He had a terribly gag reflex, but they were able to sedate him and still get the tube in without problems and I was just outside the door in recovery.

I would suggest, don't get too worried about looking at the intricacies of the procedure. Spend your time now learning how to use the feeding equipment (so easy!), and deciding what you will give him through it. Will you get some of the real food blends, or get a vitamix and cook for him as you do now and put foods through the blender?

An early peg is one of the best decisions you can make!
 
Affected...hugs to you. Thanks so much!
 
Tomswife, I'm sorry you have yet one more thing to worry about. My PALS doesn't want a feeding tube, so I don't have experience with procedures. I will be thinking of you and your husband Wednesday. Let us know how it goes.
 
I hope I did not scare you with my sister’s experience. It was only so bad because she waited far too long. She was, as I said, emaciated ( 72 lbs) and her breathing was very impaired around 30%. If she had had it when she was told I think it would have been pretty routine
 
My husband did not want the port, but the swallow study showed that food was seeping into his lungs. This is really a life saver and I agree that earlier is better. A port is very easy to use. Kate Farms is the product we use. We had to tweak the process so he didn't feel stuffed, but after talking to the nutritionist at KATE FARMS, we got it working perfectly. I wasn't able to get the plungers clean enough to reuse them more than once, so we switched to the gravity flow method. It takes longer, but works better for us. It breaks my heart to eat my dinner and never share any with my husband, but he has completely accepts it as his "way of life". Good Luck and keep asking for help from this group. They know a lot!
 
When I was diagnosed I was adamant no port and no feeding tube. When I decided to start Radicava I had the port put in instead of having IV'S placed every day. I still said no to a feeding tube until mealtimes started to become difficult with coughing and choking. The last straw was aspirating into my lungs and getting a nasty infection. I had the feeding tube placed and am glad I did. No more anxiety at mealtimes. I can still eat some food by mouth if I choose as long as it's soft and I add gravy.
 
I have had my peg for 8 years now and I still eat in the normal way, I use the peg to take my meds and vitamins 4 times a day,they taste terrible. I have had the peg replaced about 5 times and it is coming due again.
 
How did the PEG placement go? Been thinking of you.
 
The Peg tube placement went very well. I was nervous because the clinic told me general anesthesia, different method and they switched us to the center for digestive diseases. Our daughter came also. I was ready with a board for transfer to car. We arrived at 615 am. We met the nurses, Anaesthetist , surgeon b4 hand. They were very supportive. Explained all and asked if we had questions. No general anesthesia! (Who told us that?) Ha!
He was done in 1 hour. They called him "peg guy". He was fine and able to do his shuffle to the rest room. When we all got home we crashed for a nap. I slept nearby that night just in case. Tom didnt need me but the dog liked it.
Today a neighbor brought us a plate of TG dinner. He ate. He still chokes and coughs on liquids so we may be done with them. Tomorrow VNA comes and we will flush the tube.
Happy Thanksgiving. Lots to be grateful for in life.
 
great stuff! they did show you how to clean the stoma and flush the tube a few times a day?
 
Yes. I was instructed and VNA coming today. Medicare pays for 3 visits.
 
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