Getting Peg tube, tips and tricks needed.

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Crabbyswife

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Crabby is getting a peg tube Wednesday. What should I expect for his recovery period? Does anyone have any recipe's or websites they use? His doctors are very upset he waited this long to get it, and are "concerned" about performing the procedure . Any tips or tricks for using it would be very appreciated. Thank you all.
 

Nikki J

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There is more discomfort after with PALS and it lasts about a week in my sister's experience. It should not be agony I am not trying to scare you but tell you so you won't worry.
My sister waited way too long. The issues were respiratory problems after so keep an eye on that and trouble getting used to formula because her intake prior was so poor her digestive system had a hard time adjusting. We changed formula several times before getting it right. She and her husband also resisted pump feeding but it took the right formula given very slowly at first with a pump. You may not encounter the formula issues but if you do don't get discouraged and insist they keep trying until they get it right
There is a FB group for adult tube feed that is very helpful.
Why are they concerned? Respiratory status? Are they doing a RIG ( radiology guidance) that is the only kind my clinic recommends for PALS. And is the person doing this experienced with PALS?
 
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GregK

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It took me about two full weeks for the discomfort to subside. It did hurt but it was not major; I didn't need the oxy for pain. YMMV
I did live in fear of coughing and sneezing; those really got my attention. Anything that tenses the belly muscles was approached veeeerrry carefully.

You'll probably get the long, dangly tube. This one is supposed to last for years. It's often taped to the belly to keep it out of the way when not in use.

After 6 months (or so?) the stoma will be healed/matured, and the dangly can be swapped for a low profile one. These don't last as long.

Diane H has info on her site, ALS from both sides.
 

lgelb

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As Nikki says, it should be a RIG, done in radiology, and I wouldn't be signing on to have it done by anyone who's already "concerned" and trying to manage expectations. Sounds like inexperience in MND. He should have BiPAP available throughout the procedure, no long fasting periods, adequate hydration, neck support, etc. In short, the procedure "protocol" needs to fit the patient. If you don't think this is/will be happening, look elsewhere or get the next level involved. Are you going to USF in Tampa?
 

Crabbyswife

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Thank you all. The doctors are concerned about respiratory issues because of all the muscle weakness especially with the diaphragm. We're having it done locally at winter Haven hospital. They are doing it radiology guided. I am an over planner , I like to be prepared for everything. Perfect example I have a huge purse that is filled with everything my husband could need antibacterial hand gel, hand wipes, baby wipes, plastic spoons to feed him, napkins, hand towel (he won't use a bib so we compromise and use the hand towel as one) single serve apple sauce, two sets of extra meds, extra T-shirt to change him into,extra small bottle of water for when he chokes,ect.ect.ect... I really just want to keep him as comfortable as I can. I want him to have everything I can give him. The doctors said they would show us about the peg tube but I want to be prepared. I read as much as I can but alot of people here have experience it and I know experience always trumps reading something. I saw some people put food in a blender and don't use fomula, what does everyone think? I appreciate all the insight. Thank you all.
 

affected

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Pain control after the surgery is really important.

If the PALS is in pain they will breath less deeply, and when already compromised this isn't good as it puts them at more risk of developing a chest infection.

Lots of people are using blended real food very successfully. The main thing is to ensure it is really well blended - no lumps at all, and a pouring consistency. Also to really ensure the tube is well flushed afterwards. I notice that the commercial feeds really don't leave a residue which keeps the tube really clean.

We were told he would have pain for a day. Chris had a fair amount of pain for a week and they treated him like - oh really, you shouldn't have pain ... I would think, yeah no problem ramming a hole through the stomach, why would there be pain (sarcasm).

Most places are happy to replace with a button after around 6 weeks, maybe that was a typo by Greg :)
 

GregK

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> ... happy to replace with a button after around 6 weeks, maybe that was a typo by Greg

Ya, we'll go with that versus brain fart. :^)
 

dhp59

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My husband got his G-tube around 2005. I remember his respiration was not great so he made the decision to do it with no anesthesia. He is my total badass! I don't think anyone does it that way. We do not put any real food in it, only formula and we have had to change the formula only once in all these years. We also use a kangaroo pump set at a particular rate. We have changed the rate of the formula and the time in between feedings so that he could remain comfortable at all times over the 10 years. He went on formula full- time when the g-tube was put in and decided he was done worrying about choking and his swallowing was becoming impossible for him. The procedure was performed by a radiologist and now changes are done in the radiology intervention department once a year. I roll him in his wheelchair, they lift up his shirt, I watch them change it and I roll him out and back home. I use a national company for my formula and the dietician is the best. She has solved so many issues for us over the years. I find a good dietician is critical. We don't have the button type, Peter doesn't want it. His is about 5 inches long, very thin. Private message me if you would like more detail. Good luck.
 

affected

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Ya, we'll go with that versus brain fart. :^)
LOL I have far too many of them myself Greg!

dhp59 usually when done as a RIG an anaesthetic isn't used - just some local around the site. This is because breathing is compromised. A good dietician is so helpful especially if they understand the needs of a PALS - lots and lots of calories :)
 
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