Are you new to tubie life and overwhelmed? Maybe you’re a long-time feeding tube user, but looking for some new ideas? These essential feeding tube hacks will make life with a feeding tube just that much easier!
Some are specifically for pump feeding, some are specifically for bolus feeding. And – we’re working on a future list JUST for blenderized diet hacks!!
1. Modify the bag
If you use an Infinity pump, you can turn your feeding set (the bag) into a gravity set with this hack. (A gravity bag allows you to feed using just gravity, no pump.) This modification also allows you to more easily feed a blended or thicker diet through the pump with fewer alarms and clogs. Look at the cartridge part of your feeding set (the hard plastic part with the blue). One of the blue tubes has a picture of a drop of water on it. Pull that off. Underneath, you’ll see what’s in the picture. See the part I circled? It’s like a little knob? Cut, snip, or break that part off. (I prefer to just bend it back and forth until it breaks off.) Reassemble the cartridge. Voila. WARNING: If you’re feeding a liquid, it will now run straight through the tubing with nothing to stop it.
2. Snap front sleepers
If you have a little Tubie, quit buying expensive modified clothing, and quit cutting holes in your baby’s clothes! Just buy some regular, off the shelf, snap-front sleepers or one-piece outfits. They are made by Carter’s, Kushies, Burt’s Bees, and I found a variety of other brands on Zulily and Amazon just now. These can be harder to find in larger sizes, but Carter’s makes snap front bodysuits up to 24M, and they also make little rompers (short sleeves/shorts). Burt’s Bees one piece long sleeve/long pants outfits seem to go to either 18 or 24 months, as well. Much past 2T, it’s hard to find one-piece outfits at all, but overalls allow easy access while still keeping the button or PEG covered.
3. For nighttime, route the tube up the pants leg.
Got a slightly bigger Tubie? Many parents find it’s best to route the feeding tube up the child’s pants leg at night and position the pump either near their middles or near their feet. It not only keeps the tube away from their neck at night, but helps keep things less tangled as they roll around.
4. Make any backpack into a Tubie Backpack
You can use Cord Clips to attach your feeding set (either on its own, or inside an insulated cover) to any backpack. We find we have fewer alarms if we then set the Infinity pump on the side opposite where the tubing goes in and out, and then route the tubing out the backpack where the zipper opening is. No special, expensive backpacks necessary. Use whatever you have onhand, or buy a normal backpack!
Insulated covers for your feeding sets allow you to have a longer safe hang time. Add an ice pack, and most of the time, you can safely hang a feed all night without having to refill – or carry a feed all day at a safe temperature without having to refill. These really make tubie life just so much easier.
6. Prep and label meds and feeds
If you feed bolus via pump, you can prefill the bag (or multiple bags for the day if you have the supplies) and label it with the time the feed is to be given using a Sharpie. We always store our feeds in glass jars (even back when he was on all breastmilk) and label the jar with a Sharpie. Sharpie washes right off glass jars with a scrubbie. (In the case of breastmilk, I labeled with date pumped, volume, and whether it was fresh or defrosted.) If you have liquid meds to be given at different times, check with your pharmacy, but many meds can safely be pre-filled in syringes. Find some containers, label them with either the time the meds are to be given, or with the name of the meds – whatever works best for you.
Some meds may need to be kept in the dark – in this case, cover your cup with a dark container. Some meds need to be kept in the fridge. I didn’t take a picture, but I have a set of labeled cups in the fridge, too. And some meds cannot be pre-filled in syringes. For those meds, I find it works easiest for me to put an empty syringe in the cup, then add a note to the cup, in the form of another label with the medication name. Then at med-time, both the note and the empty syringe remind me to draw up that med, and having the empty syringe right there with the other pre-dosed meds means I don’t have to take the extra step of reaching over to the empty syringes box. Which doesn’t sound like a particular hardship, but I prefer to cut out extra steps whenever possible!
PS, I keep my cups on top of our dorm fridge, which sits on the top shelf of some baker’s shelves in the bedroom. They’re at the top of my reach, and safely out of reach of the kids. Because it’s so high, I a) literally never see the top of that fridge, which is how I never realized it’s kind of dirty b) toss empty syringes into the “dirty syringe” bin there behind the cups, evidently spattering bits of medications across the wall directly behind the bin, and across the top of the fridge. I guess you might want to avoid this by PLACING your used syringes into your Dirty Syringes bin, instead of throwing them like you’re on the all-star basketball team.
7. Dirty Syringes Bin
If you can at all avoid it, don’t wash (medication) syringes every day. (Wash food syringes every day!!) If you’re new to liquid medications, it might take you a while to build up a large enough stash of syringes to wash weekly. I personally just bought a pack of each size of syringes that we use regularly from a medical supply store (actually it was a vet supply store, but they’re the exact same syringes humans use) so I have a gajillion of them, but you can build up a stash just with what the pharmacy gives you (always ask for extras!) Put your used syringes into a Dirty Syringes Bin, and wash either weekly or when you run out of any particular size of syringe and need more.
Caution: keep a watchful eye the first several times you do this. We have found a few medications that even just that bit left in the tip of the syringe would get really gross sitting around for a week. Syringes with those meds need to be rinsed out same day. Most of the time, though, a good soak in hot soapy water loosens up any sticky meds, and a few good swishes of soapy water and then a good rinse clears out any leftover meds, even if they’ve sat around for a week. I really hate washing syringes, but having a whole bin means I can kind of get into a zone with it.
8. Give syringes a longer life with nail polish
Syringes tend to have one of two problems. Either the rubber tip stops functioning/gets stuck/breaks, or the numbers wear off. Cover those numbers with clear nail polish, and you’ll give your syringes a much longer lifespan – and you’ll dose your medications more safely over time!
9. Tote prefilled syringes with insulated ease
Do you feed Bolus feeds? One way to make that easier when out and about is to prefill your syringes, and then carry them in an insulated case. This avoids having to fill syringes away from home, which can get messy and inconvenient, and it’s faster, too!
10. Getting supplies you didn’t even know existed
When you’re inpatient, if you see the hospital using supplies you don’t get at home but seem super helpful, you can do two things, neither of which involve stealing. First, ask them if you may take whatever it is. If it’s disposable, chances are they’ll say yes. We’ve never had a hospital turn us down when we asked to save something noninfectuous that they were going to throw away. Second, ask for the REF number. Then ask your supply company if you can get some. Using the REF number helps your DME find the right part.
11. Command Hooks
Command hooks are so very very handy if you use feeding sets with your tube. You can stick one almost anywhere you might want to hang a bag. Some people use Command hooks next to the bed, put the feeding set and the pump in a backpack, and hang the backpack from the hook for overnight. Some people – including us – use Command hooks in other places around the house. For example, we almost always do a feed while doing school (we homeschool) so I stuck a hook next to my tubie’s spot at the table. You can hang just the feeding set and place your pump on a nearby flat surface, or you can put the feed plus pump into a backpack and hang the backpack.
Carabiners are the other magic way to hang a feed. We use carabiners (or Velcro ties) to hang feeds in the car (from the carseat, from the headrest, from the grab bar above the door), in places where a Command hook won’t fit (backs of chairs), and from the stroller.
13. Prime the Infinity without a pump
One thing about the Infinity pump – it primes SO SLOWLY. Prime faster with a manual prime – before you load the cartridge in the pump, find the blue part with the water drop on it. Push it inward as shown in the picture. Hold the bag up in the air. Voila. Instant priming.
14. Clean your extensions easily
First, if you do continuous feeds, flush the tube regularly. I think the recommendation is to flush with water every 4 hours. This will help with food/formula build-up in the extension. If you bolus, you should already be flushing after feeds.
The easiest way to clean extensions is to fill a container with warm soapy water, attach a syringe to the extension, and pull, push, pull, push a few times, then rinse. I like to follow up with a good, strong squirt of water to the part where the syringe connects.
If that isn’t cutting it, use vinegar, then soapy water, then a rinse. Still not clean? Fill the extension with vinegar and let it sit for a bit.
Many people swear by squeezing the clamp but not quite shutting it all the way and pulling it up and down the length of the extension – it provides enough friction to get those stuck-on bits. You can also get extra long pipe cleaners, but you might find that using the cleaning brushes they sell for hydration backs that backpackers and other use is both easier and faster.
I need to add that the addition of EnFit makes cleaning extensions a bit more challenging. EnFit manufacturers recommend cleaning the moat areas with either a toothbrush or a specially designed EnFit brush, because you need another thing to keep track of. We haven’t switched to EnFit, so I don’t have any direct experience with this.
15. Cap 60 mL syringes with old extensions
Do you use 60 mL syringes for bolus feeds or flushes, but your syringes don’t come with caps? (First, how is this even a thing? Shouldn’t all syringes come with caps. Tubies need to go places, too!) Use old extensions. Just clamp and cut off the extra. Throw some superglue in there if you need to feel extra secure.
16. Use your phone alarms
Having trouble with missing feeds or medication times? Get yourself a dedicated alarm app just for tubie things if you like, or just use whatever app you use for your other alarms. Pick a dedicated alert tone JUST for feeds and meds (or one for feeds and one for meds, which is what I do). Then set an alarm for every medication time and every feed time. And DO NOT clear the alarm until you’ve started the feed or administered the medications.
17. Know your extension
Top – Y-port Right-Angle extension. The top end has a Y-port (one for feeds, one for meds – or if you’re using Enfit extensions, both ports are identical) and the end that connects to the button is a right angle. This is a narrow-gauge tube. This is what most supply companies send you by default, but you do have other options.
Middle – Bolus Feed Right-Angle extension. The top end has a bolus feed opening (or for EnFit, it just has one Enfit port) and the end that connects to the button is a right angle. This is also a narrow-gauge tube. This is my personal favorite for pump feeds. I use the Yport for medications, and then switch to the Bolus right angle for pump feeds. There’s no medication port to pop open.
Bottom – Bolus Feed Straight extension. The top end has a bolus feed opening (or the one EnFit port) and the end that connects to the button is straight. This is a wider-gauge tube. This is my favorite for syringe feeds. It makes pushing SO MUCH EASIER than trying to use the tiny right angle tubes, in my opinion.
18. Keep those connections secure and covered
Med ports can pop open. Curious little fingers can pry them open. Adults with dementia or other neurological concerns can absentmindedly – or purposefully – pull the tubes from the extensions, or pop open the med port. You can tape things together and tape the extra ports closed, depending on your situation. You can also purchase connector covers (they’re available in several styles – I like our own style, obviously, but there IS a variety of styles available – including hard plastic ones) that snap around the connections to keep them padded, safe from fingers, and safe from accidentally bumping open.
19. You don’t have to hang the Infinity bag
Though I’ve given numerous tips for hanging feeding pump bags – you actually don’t have to hang the Infinity bag. After you’ve added your feed, prime out all the extra air (hold the bag upside down and prime the tubing using the pump – this will go faster if you squeeze out as much extra air as you can when you put the cap on the bag), then lay the bag on any available flat surface. Infinity doesn’t need gravity like the Kangaroo bags do, so you can lay them down instead of hanging.