I’m no expert. I’m just trying to share my learnings as a complex medical mama of 4 so others have more information than I did!
Packing for vacation looks a little different in our house these days.
While everyone else is deciding how many swimsuits to bring, I’m counting syringes.
Syringes. Medications. Extensions. Emergency supplies. Chargers. And all the “just in case” extras.
(And with 4 kids, I’m ALSO still counting swimsuits, snacks and the 47 pairs of goggles that will inevitably be lost by day 2.)
It’s a lot of work that most people never see.
The mental checklist runs on a loop for days before we even leave . . . do we have enough formula? Did I pack 1-2 backup extensions? What happens if the gtube falls out 1000 miles from home?!
God forbid 🤣 But medical mamas know . . . you HAVE to think about it. Elle is notorious for having her gtube coming out monthly.
And if I’m totally honest, there was a time when all of this felt impossible.
I remember being nervous to pack up Elle’s medical supplies just to leave the house and walk up to the bus stop to get my kids from school.
The bus stop. Ten houses up the street!
After 113+ days in the hospital, home felt like the only safe place. Every tube, every machine, every supply felt like a tether keeping us close to it.
But here’s what I’ve learned along the way . . . every medical supply we pack is another piece of freedom.
Because Elle deserves to experience the beach. She deserves the pool. She deserves family adventures and ALL the fun right alongside her brothers and sister.
So no, we don’t just pack for vacation. We pack for every possibility.
And this summer? This was her third vacation!!
From being too nervous to go to the bus stop . . . to a beach trip with a perfectly organized medical bag. (Ok, semi-organized. Let’s be real.)
That’s progress. For both her and I.
Ok, So What About Flying With All Of This Stuff?
The first trip we took was a driving trip. So that seemed an easier feat. I loaded up the car with lots of extras and felt confident. But when we went to Disney, we had to fly. And flying meant I had to fit everything into a suitcase and couldn’t overpack. Could I take things through TSA? How does this all work?
So – if you’re a medical mama getting ready for your first flight, here’s what has worked for us.
Get a Sunflower Lanyard
If you haven’t heard of the Hidden Disabilities Sunflower lanyard yet, listen up because this one is IMPORTANT.
It’s a simple green lanyard with sunflowers on it and it quietly signals to airport staff, TSA and airline crews that the person wearing it has a hidden disability and may need a little extra help, patience or time.
No paperwork. No proving anything. No questions asked.
And getting one is SO easy – most major airports hand them out for FREE at their information desks. Some airports will even mail one to you ahead of your trip if you request it in advance. Or you can order one straight from the Hidden Disabilities Sunflower website.
I got mine last year at the Pittsburgh airport. I simply went up to the Guest Services desk on landside and asked for one. Super simple.
I put it on Elle or on her feeding backpack so that as we’re moving through the airport, staff and TSA know without me having to explain her whole story at every checkpoint.
And here’s the moment that got me . . . as we were walking onto the airplane this last trip, the flight attendant saw the lanyard and specifically asked me how she could help support Elle during the flight.
She saw her. Without me saying a word.
That little sunflower did the talking for us. And as a medical mama, that meant everything.
One thing to know – the lanyard doesn’t get you expedited screening or priority access. If you need specific help through security, TSA Cares (855-787-2227) is the one to call ahead of your trip. But for making the whole airport experience feel more human? Worth its weight in gold.
Pack All Your Supplies In Your Carry-on with a Handicap Tag
ALL of the meds, supplies and Elle’s formula go in a carry on. Every single time.
Never in a checked bag. Because if that bag gets lost or delayed . . . now we have a REAL problem 1000 miles from home.
And here’s the thing a lot of people don’t realize – medications and formula are considered medically necessary liquids, so they’re exempt from the 3.4 oz TSA liquid rule. You’re allowed to bring what you need for the trip. You just have to declare them to the TSA officer at the start of screening, and they’ll be screened separately.
So this means I pack alllll the cartons of our Kate Farm’s formula and meds in this carry-on. Regardless of their size. And bring our feeding pump kangaroo bag along with it.
I typically try to pack at least one full case of the formula, because if it’s unopened they won’t open the case. But each TSA we’ve gone through has done things differently, so I’m not entirely sure what the actual protocol is. Some test every single carton. Some made us walk through the metal detector holding the case. Some barely batted an eye and let us go on our way.
Now listen, you WILL have to wait a little longer going through TSA. They have to check it. Every time.
But that’s ok! Build in the extra time, take a deep breath, and know it’s just part of the process.
A few extra minutes at security is a small price to pay for watching your gtube kiddo enjoy new experiences.
One thing I did that’s been a game changer . . . I got a handicap “meds and medical supply” tag to put right on the bag so it’s clearly indicated what’s inside.
This actually helps you on your flight too! In our experience, if the flight has to gate check bags, a bag clearly labeled as medical supplies gets priority to stay on board. You can also just tell the gate agent it’s medical supplies – they’ve never blinked.
Some days the packing list feels overwhelming. Some days I look at the pile of supplies taking over my bedroom floor and just have to laugh.
But then I watch her taking it all in on vacation (I swear she’s the happiest baby ever, but TBH she HATES the sand. The pool is more her jam) and I remember why we do every bit of it.
It’s just a bad day, NOT a bad life. And these days? These are the good ones.
What about you? If you’re a medical mama, what’s the one tip you’d share when it comes to packing/getting through TSA with a gtube? I’d love to hear in the comments!
Wishing You A Pain Free Day!
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