Getting a PEG next week - looking for tips

[rmt]

My husband is getting a PEG on Thursday and I'm looking for tips and advice. I know they are going to give us information and show us how to do everything, but I figure you guys may have advice on things to do and things to avoid. He still plans to eat some by mouth, but I think he will end up getting most of his nutrition and hydration through the tube. So is there anything we should absolutely NOT do? And any advice to make this transition go as smoothly as possible? Thanks in advance.

 

[Nikki J]

Do not be surprised if he has more pain than “they” think he should. My sister and many other PALS have been told it shouldn’t hurt as much or as long. Not to scare you and it isn’t screaming in pain but it is uncomfortable and usually lasts about a week.

the usual formula seems to be jevity. Many PALS don’t tolerate it and even fewer like it. Sometimes you have to give it a try for insurance but if he has been eating fairly well you might consider one of the real food formulas instead of the corn syrup ones.

if he hasn’t been eating and is very malnourished it needs patience and time to get back into feeding. If this is him letme know and I will describe further my sister was extremely emaciated when she got her tube

 

[GXTrex]

Does insurance typically cover Jevity? It looks pretty expensive if you need your full calories from it.

 

[Nikki J]

I think the standard is they cover if you are getting the majority of your nutrition through the tube ( vague because my sister didn’t have medicare and I don’t have a tube) but you miss my point jevity is gross in my opinion. You might have to try it first and not tolerate to get insurance to cover something else

 

[GXTrex]

No I understood that it must be tried then to try something else for insurance to cover it. I have had to jump through those hoops for my own meds similarly. I am just glad to see insurance can cover feeding tube food.

 

[affected]

I agree with Nikki, don't be surprised if there is pain for up to a week. I hated how they made Chris feel about the pain he experienced. He had been so stoic, and refused pain meds for many other things and that surprised them, then they were like, oh it's day 3 you shouldn't have pain.
Many PALS have little pain, especially after 24 hours, and many PALS have varying levels of significant pain that is easily controlled for up to a week. That's all normal if there is no significant redness, swelling, heat or smell.

The best thing is to be taught, and immediately start to regularly use the peg and treat it as something wonderful. It will soon become just a part of him. They are really easy to use.

 

[rmt]

Thanks for the heads up about the possible pain. That's really good to know!

He's lost some weight but I don't think he's terribly malnourished. I'm hoping he can gain back at least 10-15 pounds. The VA is sending us some formula but I don't know which one. What are the "real food formulas"? Is there a brand you recommend? We are also planning to make his own "shakes" at home. Do you have advice for things to include or avoid if we use a blender to make our own mixture? Should we do some formula and some homemade mix?

Thank you so much for all the advice and suggestions. I'm so excited for him to get the tube but I'm also a bit nervous because I want it to go well and have him love having it. I think it will improve his quality of life so much once we get settled in to the new routine.

 

[Nikki J]

Home made is great you need a powerful blender and to get the consistency right ( clogged tubes are not fun) but you can blend just about anything and add liquid as needed for consistency.

real food and kate farms are 2 commercials brands.

also if he wishes for an adult beverage and his medical condition allows that can go in the tube too

 

[rmt]

Nikki, thanks so much! I'm very worried about the tube clogging. We are going to start looking at blenders today. Do you have one you recommend? I've heard the Ninja is good, but other than margaritas, I don't have a lot of blender experience!

 

[affected]

I believe Nutrimix are well suited.
Also just be aware that many health professionals will tell you that you can't make your own food and give a host of reasons.
In fact, you can.
If you want to mix up between commercial and your own, just go with what works.
Commercial can be great if out for the day as they are a sealed package that travels well.
Home made can be exactly what you have cooked for your own meal and then add calories by blending with extra coconut oil/milk/cream or whatever you like.

A note on giving alcohol. Be careful not to just give a full drink into the tube all at once as it is the equivalent of sculling! 😱🤪

 

[lgelb]

Liquid Hope is another alternative tube food.

Let the radiologist know that you will be doing real food blends so they select the largest diameter tube that works with his anatomy.

 

[Wilson2009]

The VA is now using Abbott Nutrition products which includes Jevity. He should be evaluated by the staff nutritionist to determine his daily caloric need, which will determine the amount they send. I suggest you take a look at Diane Huberty's website, ALS From Both Sides. The Feeding Tube section is by far the most comprehensive single point of information about feeding tubes I have found.

 

[rmt]

Dave, thank you so much for that information! The nutritionist called to introduce herself, and she will meet with us on Thursday after his tube placement to go over everything. But then Friday is her last day. Ugh, great timing. There is another dietician that I think we will meet too, who will be the one going forward. I'll make sure to ask about his daily caloric need. He is still very active and needs to gain some weight back, but we want to make sure to do everything safely. I'll check out the ALS From Both Sides website! I've never heard of that, but it sounds like a great resource! Thank you!
Robin

 

[Lancasterlanie]

I’ve had my peg since February. There was some pain for the first couple days but was relieved with pain medication. I had the original peg replaced with the low profile MicKey a month later. It is much more discreet and comfortable. It has made my life so much easier and less stressful. I use jevity and have no complaints about it. There are some good videos on Utube about tube feeding. I use 6 cartons a day and with Medicare and my supplemental plan it has been covered 100%. My only suggestion is to have your last feeding a few hours before bedtime to avoid reflux. I still eat a few bites for taste occasionally, but it is so difficult I find I’m doing it less and less.

 

[rmt]

Lancasterlanie, your story gives me so much hope that my husband will have a similar experience! I think it will make his life so much less stressful. I know he hopes to get a MicKey eventually too. And thanks for the advice about stopping feeding at before bedtime. I hadn't thought of that!