Need advice to help gain weight on a feeding tube

Hey Golden,

Thanks to Sugaraddict for giving me a heads up to this. I have to say I'm really shocked that you're not getting better help from your Dr's!

I have a feeding tube, so I have lots of ideas for you, but I need to know a few things first, if you're happy to answer them. The good news is I really do think there are some simple changes you can make that will help relieve some of the problems you're currently having. I'm assuming you're in America so some things might be a little harder to explain as they're names may be different etc.

Firstly, the feeding tube it's self, is it a PEG or does it go down his nose (NG?) does it just go to his tummy, or does it go into his bowels (jejunum)? As someone who has an unsafe swallow myself, the first advice I would give you is to ask for a PEG-J tube (or NJ tube if his tube goes down his nose) ... I'm quite surprised that for safety's sake they didn't put a J tube in to begin with. The problem with an unsafe swallow, are you're experiencing now, is that if anything comes up from the tummy, it will be aspirated! A tube that goes into the bowels, is much much harder to vomit from (some may say impossible, but I've managed it from time to time!) as it's below the stomach. I would say this is absolutely the priority, until he has a NJ/PEG-J or J tube, he will continue to aspirate and he is at serious risk.

My second bit of advice is to STOP bolus feeding. It's clearly not agreeing with him, it'll defiantly make reflux worse, and it puts him at first risk of aspiration. You need to get started on continuous feeds! I don't know what kind of pump you have access too, but the flowcare infinity pump or a joey pump is the most likely selection. When feeding into the tummy it's self, you're able to feed for 20h a day but once he has a J tube, you'll be able to do feeds 24h a day. Now don't get me wrong, I understand the idea of being hooked up 24h a day is daunting but actually it's not as bad as you think! I am on 24h a day! my pump fits into a little back pack that I hang on the back of my wheelchair and it's pretty simple. The added bonus to continual feeding is that you'll be able to get loads more calories into him! Whilst you are just using the NG/PEG you'll need to keep the rate slow to start with and work your way up, you'll likely need to do this again once you have the J tube (the tummy is hard core, can take up to 400ml an hour, the J can't cope like that and it's recommended that you feed any faster than 125ml an hour. You CANNOT bolus feed to the J at all, it can be flushed with water though.

The third thing I'd say is that you need to try some different feeds! I don't know that I'm aware of Boost, but it sounds like quite a simple build up 'drink' rather than a feeding tube formular? I suggest you speak to someone about tailoring his nutritional requirements better! For example, something like nutrison energy has 1.5cals per ml and not lots of protein. There are also some low protein feeds that you could look into. I'm assuming you'll want him on about 2200 calories a day, so you'll need to aim for 60/65ml an hour of the 1.5ml feed, obviously it'll need to be higher if you're on a 1cal per ml feed.

My last bit of advice is to look at the BlendedDiet forums online. They were mostly set up by mums who wanted to feed their babies real food rather than give them formula. We don't use it in the UK really (often our tubes are too small, it's not something you should do unless you have a fairly thick tube as it does risk blocking the tube). The great thing about it is that you'll be able to tailor exactly what you need into the feed and likely make it very calorie dense without having all the volume issues you're currently having. The only thing you need to be aware of with BD is that it can't be fed directly to the J tube, the bowels don't have the same levels of acid the tummy has so it's unable to break down food. You can use BD with the PEG/NG tube. Don't forget that there is no reason you couldn't add elements of blended diet to your current set up, that way you're still getting some feed but you're probably able to cram a few more calories in.

I really hope that helps, please feel free at add me as a friend if you'd like, I'm happy to Skype with you to run through things if that would be helpfu, just let me know. Do drop back, I'd like to hear how you guys are doing.
Best of luck!

Put a Sonic Nerds Slush in there, maybe a DQ Blizzard too, but let it melt a little. Or gelato, melted a little too.