Peg tube placement - inside out.

Status
Not open for further replies.

Tomswife

Distinguished member
Forum Supporter
Joined
Aug 22, 2022
Messages
334
Reason
CALS
Diagnosis
08/2022
Country
US
State
NJ
City
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.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,939
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
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!
 

Tomswife

Distinguished member
Forum Supporter
Joined
Aug 22, 2022
Messages
334
Reason
CALS
Diagnosis
08/2022
Country
US
State
NJ
City
Livingston
Affected...hugs to you. Thanks so much!
 

MJT

Distinguished member
Forum Supporter
Joined
Jun 27, 2022
Messages
114
Reason
CALS
Diagnosis
00/2021
Country
US
State
NC
City
no
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.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,864
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
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
 

Dot Nichols

Active member
Joined
Jan 30, 2022
Messages
31
Reason
CALS
Diagnosis
08/2021
Country
US
State
WA
City
Bellingham and Scottsdale
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!
 

lisa g

Senior member
Joined
Apr 17, 2019
Messages
572
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
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.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
713
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
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.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,939
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
How did the PEG placement go? Been thinking of you.
 

Tomswife

Distinguished member
Forum Supporter
Joined
Aug 22, 2022
Messages
334
Reason
CALS
Diagnosis
08/2022
Country
US
State
NJ
City
Livingston
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.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,939
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
great stuff! they did show you how to clean the stoma and flush the tube a few times a day?
 

Tomswife

Distinguished member
Forum Supporter
Joined
Aug 22, 2022
Messages
334
Reason
CALS
Diagnosis
08/2022
Country
US
State
NJ
City
Livingston
Yes. I was instructed and VNA coming today. Medicare pays for 3 visits.
 
Status
Not open for further replies.
Top