Pierre Robin Network

A place to call home, where you are never alone

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Travel Tips

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 sink.
*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 case.
*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 www.bebeaulait.com. 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 get, etc.

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 arrival.

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 soaking/drying
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 through security.

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 trach
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 tubing.

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.

 

Pierre Robin Network  3604 Biscayne Quincy, IL 62305
Email us at info@pierrerobin.org

 DISCLAIMER: This site and the Pierre Robin Email List server, and the information contained within them, are designed to be relevant to parents, adults and professionals interested in PRS. The information supplied here is not to be used as a diagnostic tool and is not intended to replace or supplement individual medical consultation. Please take this information to your child's physician or your physician and discuss it together. Pierre Robin Network, the author of these pages and the members of the email list server accept no responsibility for the misuse of the information contained within this website or within the email list server messages and files.

Copyright 1999-2012 Pierre Robin Network. All rights reserved.