These are great tips from our parents, learn from the experts!
*Make a packing list, so you don't have to try to remember what to take
every time. I have a "doctor's appointment" packing list, an "overnight
stay" list, a "hospital visit" list, etc., on my computer. Then I just print
up the appropriate list when I'm getting ready to go, and check things off
as I've packed them. It really sped up my packing time when I started doing
this. Plus, I can sit on the couch and pump, and send other people to pack
for me without worrying that they'll miss something important.
*Buy a small cooler and plenty of ice packs, so you can take pre-mixed,
pre-measured feedings with you. Then when you're gone over a feeding time,
you can just pull out a bottle and warm it in the exam room or bathroom
*Whenever possible, take someone with you. It makes life much easier to have
an extra set of hands to help you manage the baby and all the equipment, to
stay with the child while you run to the restroom, etc.
*Take easily washable toys, and take extras. They tend to fall on the germy
hospital/exam room floor a lot.
*For overnight visits, pack a night light and/or small flashlight, to make
it easy to check on your little one in an unfamiliar place.
*Pack in several bags, so that you don't have to paw through a huge bag to
find what you need. Then you can put the "won't need it till we get there"
stuff in the trunk, and only keep the "gotta have it on the drive" stuff in
the car with you.
*Invest in a mirror to position in the back above the car seat so you can
keep an eye on your child while driving.
*Pack food for yourself, too, if you're going to be gone over a meal time.
An empty stomach can make things seem much harder than they already are. A
bottle or two of water is also a good idea.
*If you're going to be on long car trips, sometimes it helps to let even a
baby out to "stretch" his/her legs after an hour or so.
*Keep a first-aid kit and spares in your travel bag all the time: things
like a spare Mick-Key button, attachment tubes, and syringes for replacing
it, I. V. sponges to go under the button, Q-tips, double- or
triple-antibiotic ointment, gauze, hydrogen peroxide/water solutions for
cleaning skin, a bulb syringe for suctioning out nose/mouth, scissors,
tweezers, etc. I also carried a CPR reminder card for a long time, just in
*Learn to replace your g-tube button by yourself.
*Keep the contact information for your care team on your computer, and take
a printed copy with you when you travel. Then if your cell phone falls in
the toilet and an emergency comes up, you can still contact your surgeon, or
your cardiologist, and other providers.
***If you're pumping, buy a really useful nursing cover-up like the ones at
. That way you can keep to your pumping schedule
through doctor's appointments, in-hospital-room consultations, coffee in the
middle of Starbucks, family reunions, etc., etc., without having to try to
hold a blanket over your chest.
***If you have other kids, pack an age-appropriate bag of fun toys that they
only get to play w/at the doctor's office, snacks that they don't usually
More long distance tips, for airplane rides
First, we never went any long distance without taking two portable suction
machines. Our daughter got "suction machine dependant" whenever she was sick and
I didn't want to risk being stranded somewhere with a broken machine. Not only
was it "insurance" to have that extra machine, it made things easier upon
Whenever we set up her things at our destination, we would plug one machine
in and have it charging and use the other machine wherever we went on day trips
or around the house. If we had to take off in a hurry the next morning, we would
the the machine that had been charging all prepared with a clean canister and
tubing and could just grab up the one we had been using and close it up without
having to clean it out until we got to the next place. We have always had two
sets of canisters and tubing so that one could be in use and one could be
anyway. This particularly helped on our auto train trip where there was no
electricity on the train and we were on the train for about 18 hours! I never
checked a suction machine in as cargo on the plane, but you could do that if you
didn't have enough allowance for carry-on luggage (we usually had all six of us
so we had enough allotted). By the way, don't forget the chargers for the
machines and the plug for plugging it into the car (we always carried that plug
and cord in the diaper bag).
One thing to note about going through airport security is that some security
people get flustered by the strange equipment (like the suction machine and
monitor). It helps to say you are traveling with electronic medical equipment so
that when they run them through the scan they know more what they are looking
at. Also, a couple of times we had to plug each device into outlets at the
security place to show that our equipment was "live" electrical equipment. This
can take some time, so you may need to allow for a little more time to go
If you are going to a house, make sure that the outlets are for three-pronged
devices! My parents live in an old house, and didn't have the outlets with
the ground prong the first time we were getting ready to come. They had
those outlets put into their living room before we came since that is where
we slept with Clarice, and I bought some adapters for a couple of dollars at
Home Depot so that I could bring the suction into the kitchen and plug it in.
I also always carried the monitor and nebulizer as carry-on luggage. Our med
supply company didn't want the monitor checked into cargo, but I did do it on
the way back from a trip once because we had so much stuff. I was afraid to
do it on the way and have it get lost and then be without a monitor! I used
a midsized light-weight bag from Lands' End that the monitor in it's cloth bag
and the nebulizer could both fit in. I put the monitor inside a dishpan because
I have been many places where the dishpan was invaluable (particularly at a
hotel, where it is a pain to wash out suction equipment and dry it in a clean
manner! The dishpan doesn't take up extra space, really, since the monitor is
inside it. I also threw in a clean dishtowel so that I could use it to place on
a counter or back into the dishpan to air dry things on.
For the Bunn/compressor/humidifier issue--we have never flown with one of those.
We have either rented one ahead at the site we were going to, took it in the
van, done without it if it was just for a day or so, or had one mailed ahead by
our med supply company and then mailed it back. I finally "inherited" one from a
friend whose child got decannulated and we had that one mailed to a location we
went the most and might need one at short notice if a family emergency came up.
Two things that are easy to forget (I have forgotten them before and either
remembered at the last minute or had to get some from a med supply company at
our destination)--trach masks and trach drain bags!
Our daughter has her own little "cosmetic" bag and this is where we put her
care items like the ointments, the Q-tips, etc. I bought her a Lands' End double
zip carry on bag (I don't work for Lands' End but I have nothing but praise for
that company and how their luggage has helped out!) and this is what we used to
carry on her medical supplies (the "disposable" items) I guess you could mail
items ahead in advance if you had enough time. We also checked this back into
cargo on the way back, usually, knowing that when we got back home we had extra
supplies. I used a bunch of those heavy freezer bags with the plastic zips to
organize the supplies. In those various bags were things like: humidivents,
saline bullets, trach ties, trach masks, neb bottles, drain bags, extra trachs,
feeding tubing and syringes for bolus feeding, syringes for medication, a couple
of DeLee suction devices in case of emergency being without the suction machine
or electricity. neb kits, etc. I
also included a pair of non-Latex heavy gloves for me to use to wash out her
stuff because vinegar and soap really aggravates my hand dermatitis.
I forgot to mention that I put the catheters in the carryon "disposable med
supply" bag. As for how much of each item, I usually took twice as many as I
would expect to normally use. For example, if I would usually use one catheter a
day, for a week-long trip I would take 14 of them. That way if you contaminate
one occasionally you still have plenty. By the end of the trip your bag is at
least half-empty and you can pack other stuff in it. For the corrugated tubing,
I always took two lengths of it, cut longer than I used for her toddler bed at
home. If you are trying to run tubing up and over something at a hotel or some
place you might need more. I usually took two large-volume neb bottles. If you
have two suction machines with you, you will already have a spare canister and
We used to rent oxygen to be delivered to wherever we went, but as she got older
and more stable we stopped doing that. It did make me feel better to have it
there when she was one and we were making our first trip to my parents, who live
30 miles away from any hospital. We have never used O2 on Clarice except when
she has been sick with pneumonia or something.
So, our pieces of carry-on luggage were: two suction machines, the bag with the
nebulizer, dishpan, and monitor, the medical supply bag, and the diaper bag. The
diaper bag was our regular "to go bag." One of the best things I ever did was to
get a backpack diaper bag. For the first three years we had a regular diaper
bag, albeit the deluxe version from Lands' End. I hated to spend money for
another diaper bag but the backpack diaper bag I got from Lands End was worth
it. In the diaper bag was the Ambu bag, a little bag we called "the trach kit"
(which had the current size trach and the next size smaller all set up with ties
on them, a couple of catheters, a couple of humidivents, a pair of bandage
scissors, a small cloth first aid kit with
Band-Aids and wipes, a spare trach guard, etc.) We also had a Passy-Muir valve.
I carried the cell phone, a small camping towel (the kind that expand a lot when
wet but don't take up much space), and a small flashlight with extra batteries.
You MUST take a flashlight on trips. You never know where or when you will be if
the electricity goes out, and you would have to suction in the dark! I have used
the flashlight to suction our daughter in a movie theater, on the auto train so
I wouldn't have to turn on the light and wake the other girls up, and I always
stick the flashlight into the suction machine I am using at night for her so
that it is readily available. I am quite good at suctioning with a small
flashlight held between my teeth, by the way, just one of the many new tricks I
learned over the past four years!
Other invaluable items to have on hand are lots of zip baggies (we used them to
hold trachs, the current catheter we were using to keep it clean, etc.) and some
of the gallon size zip-lock bags. You can stick some of those in your diaper bag
and use them to hold all sorts of wet stuff like wet feeding tubing, clothes,
bibs, etc. If you are trying to tube feed a child in a car, plane, train, or
wherever, they are handy to hold so that you can catch any spills into them. She
was on Enfamil with low iron, and on trips we used the powder as much as
possible. If your child is on Pediasure or something else, you can take a couple
of the small cans in the diaper bag, have a couple in checked through luggage or
the carry on medical supply bag, and either buy more at your destination, ship
it there earlier, or have someone there get it for you. I always had a medium
bottle of bottled water in the
side pocket of the diaper bag to use for flushing the tubing, rinsing out
bottles, or whatever. We also found "Kao-lectrolyte" to be a great help.
That is the powdered version of Pedialyte-type electrolyte stuff put out by the
people that make Kaopectate. It comes in a box with four packets making 8 ounce
bottles. If I didn't use that, I would make sure I had one of the 8 ounce
plastic bottles of electrolyte stuff in the diaper bag. You can tube your child
that to keep them from getting dehydrated while traveling and even if they are
not a good traveler, it doesn't bother their stomach. When we traveled with her,
we always had a hard time keeping her from getting constipated so we tubed her a
lot more fruit and electrolyte solution than we would use at home. I used to
bring at least one of the little 6 ounce cans of prune juice with me, or more.
I either had someone buy hydrogen peroxide, white vinegar, and distilled water
for me at my destination, or bought it when I got there. If you are staying in a
hotel, don't forget a roll of paper towels, a small bottle of dish detergent for
washing things out (we used it with white vinegar for cleaning the suction
machine, used it to wash bottles, etc.) You can now get those cool small boxes
of paper towel, which would pack easily. If I was taking a couple days trip in
the car, I used a small plastic shoebox without the cover to stand a small
bottle of white vinegar, the detergent, and a roll of paper towel in. If you use
a Passy-Muir, don't forget the soap you use to clean it with (we never did find
the recommended "unscented" type of soap and always used Ivory or something like
that so I would take a small bar in a plastic Glad ware container with a top and
just pour some water in and also
use it to wash the trach ties).
You never know when you might have to go somewhere fast, so we started to
call our carryon med supply bag our "hurricane bag." I always left it packed
with about two weeks' worth of supplies. It came in handy to do that because
whenever I was ready for a trip I could just pull it out, inventory it, and go.
It also kept me from ever running out of any supplies at home.
For medications, I always packed them in a heavy Ziploc bag and put them in
carry-on luggage. I can't tell you how MUCH that double zipper Lands' End
bag used to hold and still met carry-on regulations! Don't forget bottles, sippy
cups, the containers you use for suctioning water (we used four ounce baby
bottles with caps and rings). An extra bottle in the diaper bag, with a cover,
can be used to run the water into that you are using to clean the tubing if you
can't wash it out right away. If your child is still an infant/small toddler and
you don't know if you will always have a safe high chair or somewhere to prop
them up for feeding, I heartily recommend the "No Jo" brand thing you can buy
that Velcro, has a crotch, and you can use to safely hold your child in a chair
of any kind. One of my friends who had a trached child gave me that tip.
We always took turns doing the nursing care on trips. We either co-slept
with her in the bed next to us, or with her on a mattress on the floor. We
sometimes used one of those expandable mesh side rails to put on her side of the
bed. Safety 1st makes one that collapses flat and down to a small enough size it
easily fits flat into a large suitcase and takes up little space.
When you make your airline reservations, make sure the agent identifies your
child as handicapped, needing a wheelchair. If they don't need a wheelchair,
it doesn't matter. We never got much of any help with just saying we needed
assistance. It seems like the airlines don't think you need help if you don't
need a wheelchair. It is a pain to carry all the carry-on luggage, a car seat,
etc. and deal with suctioning and other things at the same time. If
someone showed up with the wheelchair we would just say we didn't need it but we
needed help because of our child's trach. We always took her car seat on the
plane since we would need it at both ends, and I didn't want her neck jerked
around even if we just had a rough landing. Always felt safer with her in the
seat, and she slept in it because she was used to it.