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Traveling with a Tubie: What to Pack

There is no such thing as packing light with a tube fed kid. Packing light is asking for trouble. Not bringing extra of EVERYTHING is asking for trouble. If you pack more than you could possibly need, you probably won't need half of it but if you don't have it you will most definitely need it. :) Raya is by no means a seasoned flyer but since it's not our first airport/airplane circus, I thought I'd share my pre-flight/pre-visiting family trip preparations so that hopefully someone else can benefit from it. :)

This isn't our first time flying with Raya. It's the second. :) The first was MISERABLE for many reasons including but not limited to: I was alone with her, we had layovers both directions, she was 13 mos old & had big time sensory issues, she was SOOOO squirmy, we were flying during naptimes and she couldn't sleep while I was touching her, it was back in the days of vomiting bile and draining bile into a bag hooked to her G tube (take that, airport security!), she was a lap child, she had 6 different meds and was on 20 hour feeds, and there was a rather large time difference. Horrible. In spite of the not-so-fun parts the trip actually went surprisingly well, especially at airport security, so I'm trying to prepare well this time too. First up was an hour or two researching the TSA's policies on medical supplies, and more specifically on taking liquids through security:
Find any policies that apply to whatever you're bringing and PRINT THEM!! I also printed my airline's luggage policy stating that a checked bag carrying only medical supplies is free of charge (because we're flying on an airline that charges for all checked bags. meh.). It's another one of those times where it's best to not only know what the policies are, but also to have a printed copy of it so you can remind any TSA workers that you are, in fact, following policy.
Before last month's failed milk trial, I had decided just to take enough formula on the plane for the day we'll be traveling and that if anything happened to the rest of her formula in the checked bag, I could just go buy her Pediasure and substitute that for the week. Um, yeah, can't do that now. She'd be stopped up and puking in no time. For that reason alone, I printed out the TSA's formula policy so that I can at least take 2 days' worth of Peptamen in the carry-on since it's not something you can just go out and buy.

*Be EARLY! If you're not crunched for time trying to rush through security, things will not be nearly as stressful and it will be much easier to be patient with TSA agents. If you're extra nice to them, they will be nicer to you.

Next item on the list is the carry-on bag. The word "carry-on" just makes me sigh because there are a lot of us traveling which equals a lot of carry on crap. I haven't packed mine yet but here's what Raya's got in her carry-on so far:
Here's a list of what's included:
  • Feeding pump & backpack (brand spankin' new backpack!)
  • Printed copies of TSA & airline policies
  • Pump charger
  • Full pump set (as in 750ml in a 500ml bag) and ice pack
  • Blue puke bags
  • 4 extra cans of formula (1 day's worth in case the checked bag is lost or late, heaven forbid!) **Note: After getting an email from another tubie momma, I swapped out the metal cans for the new cardboard cartons because she said the TSA will be able to see through them on the x-ray machine, unlike the metal cans. Unfortunately, this was not the case and TSA still wanted to open the cartons**
  • 1 60ml bottle of sterile water for flushing (we don't normally use sterile water but TSA won't question medical water so it's just easier since we happened to have it)
  • Extra med syringes (5 & 10ml)
  • 35ml syringe
  • Extra blue dispenser lid for giant bottle of Prilosec
  • Extra extension tube (was in packaging still until Raya opened it)
  • Bolus extension+syringe without plunger for emergency burping needs
  • Extra split 2x2 gauze
  • Micropore (paper tape)
  • Hypafix (cloth tape, pre-cut)
  • 60ml cath tip syringe
  • Extra pump bag (in case the one in the backpack breaks and/or in case TSA makes me open the extra cans of formula, which hopefully they won't)
  • Emergency G tube replacement kit (see below for contents)
*Not pictured:
  • Diapers (um, duh, why didn't I put those in??)
  • Wipes
  • Disposable chux pads for nasty airport changing table in case we have to do that
  • Plastic baggies in the unfortunate event that she has a poopy diaper on the airplane (heaven forbid)
  • Nitrile gloves (like latex only...not latex)
  • Clorox wipes (you'd better believe I'll be doing a thorough scrub-down of all of the kids' seats before ANY of them are allowed to touch anything!)
  • Liquid meds/ice packs/insulated lunch bag to carry them in
  • Plastic grocery bags to put messy clothes in just in case of any bodily fluid mishaps
  • Goldfish crackers
  • Extra shirts for both of us
  • Her karate monkey blanket
  • Whatever the heck I'm going to entertain her with on the plane (?!?!)
  • Big brother's Epi-Pen & Benadryl
Usually for emergencies, I have a plastic baggie in my purse that has a spare G tube and the Luer tip syringe (not to be confused with luer lock) that fits in the balloon port. When we're close to home, that's all we really need because we don't venture too far from home and could come home if we needed to. This situation is ENTIRELY different though, so it warranted putting together a much more complete emergency kit to take on the airplane. Here's what I came up with:
Here's what's in it:
  • Spare G tube (previously used but still in good shape)
  • 6ml luer tip syringe to pull water out of balloon with
  • 10ml luer tip syringe pre-loaded with 5ml of water & a syringe cap
  • 2x2 split gauze (to clean stoma before putting tube in and/or wipe up excess lubricant afterward)
  • 1ml syringe pre-loaded with water-soluble lubricant (i.e. KY Jelly) and a syringe cap (and yes, I'm rather proud of myself for thinking of this part)
So it turns out that KY Jelly sucks right into a 1ml syringe with no trouble and 1ml of it is PERFECT for lubing up a G tube. Yay! I also put in a couple of Q-tips because if the stem of the G tube bends when you're trying to get it in, you can pull the cotton off of one end of the Q-tip and stick it down into the port on the G tube to make the stem stiff. All of it fits perfectly into a ziploc sandwich baggie.

Then there's the checked bag of medical supplies. *sigh* This actually went better than I expected and I have my fingers crossed that the airline will honor their medical supply policy and not charge me for the bag. I'm also crossing my fingers that the bag makes it there on time. This bag includes a week's worth of supplies (since that's how long we'll be away) and the items we'll need in our carry-on for the return trip. Here's everything before I put it in the duffel bag:
What's in the checked bag:
  • 1 case of Peptamen Jr. 1.0 (the one time I'm grateful for the new cartons, which are packaged differently so they're a little lighter & fit in the duffel bag better than the cans)
  • Pump bags
  • Extra G tube kit (complete kit that we hopefully won't need to use since it's the wrong size & brand)
  • Water soluble lubricant
  • 1 liter of Pedialyte
  • Pile of 2x2 split gauze
  • Micropore (paper tape)
  • Medipore (cloth tape like Hypafix only it's perforated into 2" pieces so I don't have to bring scissors)
  • Thermometer (and phone app that translates Celsius into Fahrenheit since the thermometer only speaks Celsius)
  • Spare extension tubes
  • Bag-o'-syringes, assorted sizes
  • Extra medicine dispenser lids
  • 4' tubing extensions (to make bedtime feed without IV pole easier)
  • Y-site extension set (upper right-hand corner, red plug w/purple adaptors; we use it to give meds)
  • Extra bottles of sterile water for return trip
  • 60ml cath tip syringes
*Not pictured:
  • Extra disposable chux pads
  • Extra nitrile gloves
  • Extreme diaper rash remedies
  • Children's tylenol & benadryl
Am I forgetting anything??

Well, aside from the obvious CLOTHING that is not in any of those lists. :) And the carseat (thank heavens she's not a lap child anymore and I can strap her in!). And the stroller. And the other 3 children. And their stuff. And my stuff. And a camera to document the adventure. We'll buy diapers when we get there and hopefully everything else will arrive at the same time we do. Stay tuned for the next installment of Traveling with a Tubie: How to Navigate Airport Security. Should be exciting. :)

The Oley Foundation and the Feeding Tube Awareness Foundation also have some great tips for traveling with medical supplies and tube feeding on the go.


  1. This is a great post! Our family just returned from a trip with our child who is trached/tube fed. This is our third time traveling, and each time has been a learning experience. We arrived for our last flight 5 hours early and it certainly made things easier.

    I love how organized you are!

  2. I love your idea of packing a syringe of lubricant in the emergency kit. My daughter (6 years old) now has a non-balloon button, but I'll still carry the supplies to pop back in her spare mickey just in case something happens. I've been using a travel sized tube of ky, but I think a filled syringe will be even smaller to put in my bag.

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  4. I'm so glad to stumble upon your blog, particularly this entry. We're taking our son for a 20 something hour flight trip. Thanks for the checklist, I will be using yours to pack James' medical essential :)

  5. And thank you again for making this blog. Your blog must have helped us parents in similar situation, as you and your daughter's. Reading it, I can relate, and also know exactly how you feel, and go through while caring for your daughter and helping her grow.

  6. So I got my first feeding tube in January 2017 and the started TPN in June 2017. In August 2017 I had two specialist appointments, that I had to fly to FL for (USF Adult Motility Specialists). That meant I had to be in FL for 9 days. Keep in mind TPN and IV supplies are shipped weekly so I had to call my infusion supply company and me and the pharmacist had to figure out how to get my supplies early but also not too early that all my TPN would go bad before I could use it. We ended up doing my normal weekly shipment (I receive my TPN on Fridays typically) and the day before I was due to fly out that Tuesday, they shipped me additional bags and supplies. Then came the packing all of my supplies. I ended up packing three suitcases (one personal, one with medical supplies, and one with all my TPN plus enough medical supplies for two days; this bag I brought as a carry on, on the plane), one duffel bag (with clothes and electronics), and one backpack (holding my wallet plus all the stuff I was infusing). I also obtained a note from my doctor saying all of these additional supplies were necessary (I never had to show it to anybody though because nobody questioned my things), and labeled my extra suitcases with a label that clearly said "MEDICALLY NECCESARY SUPPLIES". I had no issues on the way there or back. And actually on the way there the TSA agent said to me and my dad (he was helping me to my gate) that he was a deacon for my church and he literally wrote down on a piece of paper my name and my diagnosis and he had his whole church pray for me. The TSA agents were so understanding... I was profusely apologizing for being such a hassle and they said it wasn't my fault and it was no problem. On the way back I was profusely apologizing and the TSA agent said , "A girl has to eat even if it is a little different then normal". I am used to being bomb tested and patted down due to all my braces and the fact I use a wheelchair especially in the airport. I also can't do the x-ray machine because of my shoulder issues. So they did the same thing like they had before. The only difference was they had to swipe all my TPN bags and formula for bomb residue on top of my braces and hands. I felt like TSA did a great job despite the unusual circumstance


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