Feeding tube - Any advice?

[sootylad]

Hi first time on this site.
My husband has had bulbar palsy/mnd for four years now. He was very opposed to the concept of the PEG. It came down to the choice of getting the Peg or starving to death as he was just unable to get enough food and fluids He had lost a lot of wieght and they kept him in hospital overnight and gave him continuous feeding and fluids - it was transformational. He now takes all food via the tube and he has five cans per day. Up until recently just the children,(11, 14, 18yr) family and friends did the feeding, but now we get a district nurse to do two of the feeds Monday to Friday, which has taken a lot of pressure off me. So Concerned Daughter - it is your fathers choice - but feeding him and keeping him healthy will be a lot easier once the PEG is in. all the best

I do understand concerns around the peg - but it is such a minor procedure, and once in it can be replaced by the PEG nurse in our own home.

 

[BethU]

Let me add a p.s. ... I've finally gotten the hang of it with the tube. I stopped using gauze over the opening, as there seems no point to it after a couple of weeks ... the connection is always clean ... so I'm not dealing with tape any more, which was the most complicated part.

It is terrific to not have to spend hours a day getting food and liquids down my throat. I still eat a little good stuff by mouth (anything with frosting on it) to thank my taste buds for their decades of service, but the tube is a game-changer for me. I can get 1,500 calories down with just three feedings a day.

I realized yesterday that I hadn't choked or coughed in several days. (Knock wood.) The tube plus BiPaP have made a significent improvement in my daily quality of life.

 

[Marose]

caring daughter. i am in a similar situation with my mother who is 77. She was very afraid at the thought of a "food tube". After watching a video sent to me by the ALS society, i felt much more prepared to address this with my mother. Things that were pointed out was this was not a step back but rather a step forward on your health...to get the proper fluids you need. People described how it made them feel better getting the proper fluids and nutrition. They said many changed their attitude about the peg once they went to a support group and heard the people's positive feedback and that they wished they had gotten one sooner. Knowing that you can still have things by mouth (as long as you can safely tolerate it) was something that helped my mom.

 

[shankar.yes]

There is a risk of getting your colon punctured leading to either shock or sepsis it all depends on how strong the person is. My moms peg went awfully wrong as her colon was punctured they had to open and do a surgery she went into shock a day after this and is now on full time vent with oxygen and can not move anything except her legs a bit.

 

[Al]

I am sorry about your mothers trouble Shankar. This is the first time I have ever heard of a colon puncture. The surgeon was obviously incompetent. It raises the point that while getting a PEG tube inserted is fairly simple it can be tricky if the surgeon has no experience with it. The moral is, ask questions. If they haven't done it before, find one who has.

AL.

 

[sunshines]

My advice would be get the feeding tube before muscle mass starts to burn off.

My father was diagnosesd with Bulbar ALS 9/07 and progressed slowly for about a year. A feeding tube was recom. in oct. 08-he refused it then. We couldn't seem to change his mind and respected his wishes for quality of life. Little did we know what situation would drive him to getting the feeding tube...
He got to the point where he couldn't even swallow water, yogurt, boost...you name it. On the 3rd day with this condition we had to call paramedics. The experience with paramedics, and emergency room was horrifing. He was pulled and yanked so many directions. He can't lay on his back due difficulty swallowing and must lay to his side, but yet every nurse and doctor wanted to "try" to lay him down.
At that point he had 3 choices- come back to the hospital with the paramedics every week-since he still wouldn't be able to eat. we can't drive him in the car, and no neck support that works.
OR live at a "home" hucked up to an IV- which was also uncomfortable.
OR get the feeding tube and come home.
He opted for the feeding tube.

By now he had lost so much muscle mass, that since he's been home (18 days) he is a completely different person.
He can't sit in his lift chair, he slides down and has to be reajusted every 5 min.
Can't sleep in the hospital bed, we can't figure out why.? We have reinvented the idea of a bed/matress. Two hours is as long as he can sleep-on the couch, then sits in the chair, maybe sleeps for a little bit. then goes back to the couch for a few more hours.

It is so difficult watching him suffer. If we only knew the circumstances in which he would agree to get the feeding tube, we would have pushed him to get it earlier.

 

[redneck charger]

Caring daughter.. I don't know anything about the peg.. My mom decided agaisnt it, and the only reson she did, she didn't want to prolong the disease. My mom faught very hard through this disease..I think it matters in which way ALS hits you first. If it hits your swallowing first, they yes I think a peg would be a great idea.. But Mom didn't have trouble swallowing till the wednesday before she died on Friday..Just my view on the peg.. Wish you and your Dad the best.. God Bless

 

[shankar.yes]

Hi
A colon puncture was told by the doc before as she said that about one in thousand peg procedures have problem of puncturing colon, now the issue with my mom was that due to the puncture they had to do surgery with gen anaesth., after which her diaphragm stopped working in couple of days. I dont know whether she was so weak that she lost her mobility and her breathing soon after the peg issue. She never recovered from all of this and died last friday. My thinking is that once diagnosed peg can be done asap to avoid complications later.

 

[Al]

I am sorry to hear of the death of your mother Shankar. I know you fought for the best for her.

AL.