A Couple of Tube Feeding Questions

[Landis02]

My PALS is eating less and less, so we are increasing his supplemental nutrition and water intake. To date, we’ve never given him more than 10 oz in a session (no clue where we came up with this volume). I know it can vary, but how much volume do most folks put into the tube in a sitting?
As he switches to a liquid diet, how does that affect BMs? He regularly goes every 3 days. Will his output volume be a lot less than when he was eating solid food?

Lee

 

[Nikki J]

How much is mostly dependent on how he feels. Just like eating by mouth he will feel full/ not hungry. How are you doing this? Gravity feed? If you are transitioning to all tube feed at least consider pump feeding. We found it worked really well. My sister just asked for it when she wanted it and told us how many containers of formula. She had a set rate and it only took a couple of minutes to start it up. Then she and we could do whatever ( she was chairbound)

The other issue could go either way depending on what he is “ eating” and how he reacts

 

[Landis02]

We are doing gravity feeds.

 

[Landis02]

I misspoke last night. We do feeds via bolus method.
Nikki, when your sister did a feeding session, what was her normal volume intake?
This last week, we’re now doing 6 g tube sessions to get in 2 cartons of “food” and 1 1/2 liters of water. This is very time consuming for both of us. I’m hoping to increase the feeding/water amount in each session and cut down on the number of sessions. I’ve also been looking into pump feeding.

 

[IronLady]

Different feeding regimens suit different people and their home situations, and it can take a while to figure out what's the best fit.

I prefer pump feeding – a set volume delivered at a set rate over a set number of hours, typically overnight – and I have found I need lower doses of laxatives the more liquid feed I have not because of volume but because it is looser. (I am completely immobile)

I eat a few spoons of food orally, but the bulk of my calories is given through my tube and is a mix of blended and watered-down food, yoghurt, smoothies and (European) enteral nutrition.

And once you've it all figured out, undoubtedly something will change, and the regimen needs to be tweaked!

 

[joemz200]

My wife gets two feedings a day, each with 2 cartons of 8.5oz Nestles Compleat, and 500ml of extra water each feeding. That adds up to 1400 calories a day, about 60 grams of protein, and a liter of water. This is what every dietician we've talked to recommends.

It seems to me your PALS is getting 50% more than this, which I guess could make sense if he's a BIG guy. But most PALS aren't active athletic types who engage in strenuous exercise, so why would he need so many calories

You should check with the clniic dietician

 

[Nikki J]

Landis my sister usually did one or two cartons at a time. I think her pump rate was 240 ml/ hr. And we did water flushes before and after. I can’t remember her goal number of cartons maybe 4-5. She was very petite and also needed to gain weight. She was not hypermetabolic as some PALS are.

I should note the clinic suggested overnight feeding via pump but she didn’t like that and switched to the intermittent daytime on demand I described.

The pump is very easy to learn

 

[lgelb]

Without verifying the numbers in one carton/box, I wouldn't presume that one formula's calories by weight = another. And if mixing with water, ratios may be different, tube diameters differ, etc.

Whatever delivery system, which I certainly agree should be individualized, a high-quality real-food formula such as Whole Story, or blending real food all or in part, can help keep things moving (our bodies were not built for corn syrup or pea protein bases) and assure the PALS of the nutrition that we all need.

 

[JAM]

My PAL’s does 3 feedings/day, 2 cartons each feeding with a flush before & agate each feeding. He does gravity (?) feeding with a bag. This is what the dietician told us to do. He eats a small additional snack in between.

 

[IronLady]

Yes, you're correct @lgelb

I should have stated that I've been given personalized guidelines on RDAs for calories, protein, fluids etc by my Dietitian, who also helps on different ways to best achieve this. I am on a high protein diet and my Rx enteral protein shots are derived from meat.

As they're also responsible for the feeding tube, they are aware of its capabilities and limitations.

I'm reviewed every 3 months and adjustments made to the RDAs, if necessary.

 

[Jimi]

I do bolus feeding (60 syringe ) takes 5 minutes Per feeding and I supplement vitamin d. Blood work is good . Almost four years locked in with a trach.
.

.**early 360cc water
**9am 1.5 can isoscource = 562cal + 240cc water
**1:00pm 180cc water/240cc juice(100cal)
**4:30pm1.5 can and isoscource= 562cal + 240cc water
Total: 1225cal

 

[TLARRI1]

My wife is considering getting the feeding tube, but she is terrified of the thought of it maybe being painful, and uncomfortable. She does have anxiety issues. Can anyone help give me some tips on how this procedure affects someone?

 

[Nikki J]

I think the sooner you have it the less pain ( because weaker abdominals later on ) but the pain is only for the first week or so and they can medicate you so it is tolerable.

My sister waited too long and it was uncomfortable for a week but she still said it was the best thing she did

 

[MollyJennie]

Hi there!

My mom just had the procedure 3 weeks ago! She had conscious sedation using Remimazolam at Mass Gen and said it wasn’t painful at all. Even the part they said that burned she said her high dose B12 shots she gets every week are way more painful. Like I mentioned she is 3 weeks post op and is having very slight discomfort of the site but she also just had the “stitches” taken out and it’s being managed by extra strength Tylenol. We always joke that I got the “doesn’t suffer well” gene from my mom. She doesn’t like feeling anything but 100% great so ALS in general has been hell for her however if your wife is scared I would definitely trust my mom’s feedback. She doesn’t down play her discomfort for us. She’s really honest so I trust when she said it didn’t hurt that it didn’t in fact hurt. Wish good luck and care to you and your wife!

 

[JudySmith211]

I got a PEG tube last October and I requested pain meds prior to getting it. I needed them for a while but the pain gradually subsided. I was nervous about getting it but really had no other options due to swallowing problems, but it has proven to be very beneficial to me. I use Kate Farms nutrients (120 ml) 4 times a day using a syringe that screw onto my tube. I also take 30 ml of water before and after the nutrients. I am still able to eat food when I want and drink fluids with a straw. All medications are given through the PEG. I have heard that after 6 months you can get a “mic-key” and eliminate the tube.