Traveling w/ a Nebulizer??

[Momof2wCF]

I think a little girl in our town has VATERS-- isn't it partly a defect of the trachea? (among other things?) Tell me more about it if you don't mind educating me. \
And... any advice to give on g-tube/ride bar issues or anything that's been good to know for you guys?

 

[SereneOne]

I think a little girl in our town has VATERS-- isn't it partly a defect of the trachea? (among other things?) Tell me more about it if you don't mind educating me. \
And... any advice to give on g-tube/ride bar issues or anything that's been good to know for you guys?

Yes, VACTERLS...each one stands for a different defect. V for vertabrae/rib anomalies(Meg has that), A for anal atresia, you can be born without a butthole and they can make one! C is for cardiac defects(Meg has ASD/Multiple holes in her heart, surgery next year at MUSC),T is for the trachea...I can't recall the name, where you get a tranchotomy, E is for ear deformities and something else, R is for Renal defects(Meg has only one kidney and it is multicystic) and also for deformities of the radius part of the arm, L is for limb defects such as club feet and extra toes, so on, and S for single umbilical artery...a sign that something is wrong. Meg then has the gtube, RAD and did have hypoparathyroidism. As long as one has three of the defects they are included under VATER.

Meg is going to turn four before we go and she only likes to ride such things as Pooh, Aladdin, Small World, Dumbo, PPan, Jungle Cruise...seeing shows like the Bears and Beauty and the Beast. The tube was not a problem on any rides. She has a PEG tube. She also eats some by mouth. She is doing so well....I am just worried about her heart surgery. I know they have made incredibly advances...but her twin died and I do not want to have to bury another child.

 

[Momof2wCF]

Heart surgery always seems spooky to me too, but they have come up with lots of new techniques that really help people recover faster and with better outcomes. Best wishes for you guys next year!
VATERS is what the little girl in town has-her name is Kinsley, and she has a twin w/o VATERS.
Sorry nottelling, we're way

 

[Tikitoi]

We used to have a mid size nebulizer that I put in the carry on bags. Then we started putting it in the checked bags. Then we finally got a travel size one and it is perfect.

 

[nottelling]

Will it be ok to have her meds pass through the "X-Ray" machine that scans all our carry ons?

 

[Chuck-PA]

Parent of a 19 yr old w/CF.
We have traveled to WDW over 18 times.
Our carry on at this point of his life is used basically as a medical bag. It has his nebulizer and all of his meds and neb cups and hoses and inhalers.
In regards to the refrigerated meds---we put them in a zip loc with an ice pack and immediately refigerate it in the room fridge along with the script on the box. We called the pharmacy and the company who make the meds and they are good for a certain amt of time from hours to days without refrigeration even though they are to be refrigerated.
I am always stopped at security to check the neb and sometimes they plug it in.
We always carry a list of all his meds and his meds are kept in the original container. About 1 or 2 months before a trip we start to save the extra bottles so that we have an original container but not have to take it all with us. Just the right amt and a few extras just in case.
He has a G-tube and has never had a problem on the rides. If you want to protect it, you may want to tape it with a gauze patch around it, like you did in the beginning. And for peace of mind, carry the extra button with you to the park.
We do not take the vest with us, we go back to manual Chest PT for the days we are there.
His G-tube is for Over night feeds--don't tell the doctor but we don't do it while we are there. ..he eats so many high calorie snacks and foods that he makes up for the calories while there. At home, he does not eat as good as he does in Florida, he is just too busy with life...girlfriend, work and school.

Just have a great time and create as many memories as you can so that you have something to talk about when times get tough over the winter months.

 

[Camster0307]

Apologies to nottelling, I don't mean to hijack your post Just a note and question to Cheshire Figment. (might be relevant to you?)
I have two enteral pumps, a nebulizer, neb tubing and misc meds for it, 70 cans of enteral formula, and 14 enteral bags. (besides regular meds)These alone will take up at least two suitcases. You really don't think I should check it? Isn't there some sort of limit even if it is medically necessary? Now I'm worried!! Please move this post if you think I shouldn't have put it here. Thanks!!

Just came across your post today. Looks like you got some great advice - just wanted to add my two cents. I've traveled to WDW every year since 1998 with my two daughters - one with significant medical needs. I carry on her suction,sat monitor & nebulizer and @ a day's worth of medical supplies. I ship all other supplies - formula;diapers;suction catheters;trach supplies;O2 tubing,bath seat - two pretty big boxes worth. As long as you do it ahead of time,& not overnite, the cost is not that bad - usually @$25-30/box. For me, well worth it so as not to have to lug it through the airport. I usually have it delivered to the resort a day BEFORE I check in so I can call and confirm it's there! Just mark on your address label your name & arrival date and the front desk will hold it for you. Have not had a problem once! Good luck!

 

[Chuck-PA]

We just got back from our trip to WDW with our son's nebulizer.
TSA at both Philly and Orlando stopped me with the nebulizer.
They want it out of its case and placed separately in a plastic container they use for your belongings.
They asked who it belongs to and you walk up to claim it and they told me they were plugging it in to test it.

They thanked me and sent me on my way.

 

[Camster0307]

It's so interesting to hear how many of you have had your medical equipment taken out of your bags and examined by security. I travel every year with my daughter's equipment and am always prepared for the same to happen to me (I even carry a Dr.'s note explaining each piece of equipment) and we just zip through security. I don't know if I should be appreciative of that or worried - then again, we fly out of Boston's Logan airport !

 

[DizDee]

Another CFer here!
Wow, so many, it's great that we all LOVE our Disney!

I travel all over the world and make sure I have all my CF related nebulizer schtuff and meds in a labeled medical carry on. I would hate to think of the possibility of losing luggage and my "cheap meds" rolleyes1 ) and equipment being lost! I also label everything with my contact info and contact info for our destination, just in case.

Another tip: I have all my meds, doc info, emergency contact info in a .pdf file saved on a key ring thumb drive on the case and on my purse or person.

My last trip to WDW, Orlando airport bomb sniffed my nebulizer.

But other than that, I've never had any problems carrying on anything, medical wise including the diabetes related syringes etc.

For all those traveling to WDW soon, have a great trip!!!!

 

[Momof2wCF]

Hey DizDee, Welcome to the boards and thank you for the input! I wouldn't have thought to put med info on a thumb drive, what a great idea!!
hmm.. if we get a bomb-sniffing dog, DD will probably want to play with him instead of hurrying through security. Think that could lead to charges of hindering an officer in his official duties?
CHEAP meds, ehh?

BTW, we love DL too. Looking forward to seeing how WDW is different!!

 

[DizDee]

Hey DizDee, Welcome to the boards and thank you for the input! I wouldn't have thought to put med info on a thumb drive, what a great idea!!
hmm.. if we get a bomb-sniffing dog, DD will probably want to play with him instead of hurrying through security. Think that could lead to charges of hindering an officer in his official duties?
CHEAP meds, ehh?

BTW, we love DL too. Looking forward to seeing how WDW is different!!

Thank you Kirsten for the welcome!!

I wish the bomb sniffers were dogs - they are like an xray type machine that scans and detects explosive materials. Not as nice to pet or to play with, that's for sure!


Wow, and 2 kids with CF, you must have your hands full of routine and meds. BTW - I am a 51 yo, Grandma CFer!! Can you believe it?!!

I'm a born and raised Dlander, but you will LOVE WDW. It is so awesome!
Have a great time!

 

[pigeonmom]

I have traveled with my best friends family as their nurse for their medically fragile son. We ship ahead the heavey bulky supplies like others have done and always call to confirm thier arrival one or two days before we leave. HOWEVER her sons supply company puts together the order and ships it from their wharehouse. Might want to check with your company to see if they will do and can save yourself a little money.Just make sure you have someone who is familar with your supplies double check the order BEFORE it is shipped. We learned this the hard way on the first trip.

Carry all essential medical supplies in roll on suitcases which I have labeled on outside as medical equiptment. On the outside we have placed shrunken copy of letter of necessity from doctor and additional full sized copy on the top on the inside.

We usually take his vest and rent a machine from a company in Orlando while we are there.

I haven't gone with them in the last 2 years, but I always called about a week in advance to inquire about a refridgerator in the room for storage of his Tobi neb solution and have never been charged for it either.

Have a great trip. There is no place more magical

 

[Momof2wCF]

Thanks for the info, pigeonmom! Always good to know what other people have done that works!
Congrats on your continued health, DizDee! That's awesome!! We moms love to hear from CFers like you!!!!

 

[Camster0307]

Pigeonmom - It is nice to hear how other families manage travel with a child with special needs. Thanks for sharing.
Had a question - how easy was it to get your supply company to ship supplies ahead for you? I've always done it myself - never even thought of asking. My company is not always cooperative - I have a hard time getting them to get my equipment down there - I can't imagine they would take care of the supplies. My daughter requires O2, at times, and therefore needs a portable tank to carry around the parks. My company wants me now to bring my own (empty, of course, for the plane ride). Say it's hard to find one to rent in FLA! Give me a break! What's the point of having a national equipment company if they can't get you what you need when you travel? I already bring enough things on my own - they should be doing something - that is their job, isn't it?

 

[pigeonmom]

QUOTE Camster0307
how easy was it to get your supply company to ship supplies ahead for you?
His case manager told us to figure out what we needed and call in....

I have a hard time getting them to get my equipment down there
We transported all his own equiptment EXCEPT oxygen and vest machine ourselves, plus 48 hours worth of essentail supplies

My daughter requires O2, at times, and therefore needs a portable tank to carry around the parks.
Getting supplies in Orlando has been EASY. So many people with special needs travel there to experience the magic. We get oxygen from Apria (nation wide provider) in Orlando which they deliver on a cart to the resort in advance of our arrival. We only need for emergencies right now. My friends son is on MA so it hasn't been problematic to get the oxygen.

Are you flying? If you think you may need oxygen in route you must order it from the airline. They will ask you how much you need as well. I would order if there is any chance you may need it in flight. Better safe than sorry.

I'm confused. You company wants you to take empty green oxygen cylinder?
Call me naive, I am a nurse, but what good does an empty oxygen tank do you?

May be easier to contact the provider in Orlando yourself to arrange. You know the saying if you want something done right...


equipment company if they can't get you what you need when you travel?
His local company stopped wanting to ship supplies so we said fine, we can take our buisness to larger nationwide company no problem. Now they still ship. Has been a 12 year customer.

Polite persistence and exploring options often pays off. Good Luck

 

[chezza]

Hi unfortunately I am back home now but my trip to orlando was great, no problems with nebulizer or my tablets at customs, only complaint it was too hot, late 90's every day, still got lots of shopping done in the air conditioned malls.


Kirsten I hope you enjoy your trip to wdw, it truly is an amazing place & at least it should be a bit cooler now. Take advantage of the fast past systems, it saves lots of time if the queues are long. Make sure you don't miss the Tower of Terror, & Soaring. We came out of Animal kingdom at about 1pm as it was very crowded, went back to our villa for a quick snooze and then went off to Magic Kingdom. You only have to pay to park once even if you go to another park. it's $11 per day.


DizDee, congrats on your age & also being a Granny, can you enlighten me as to what a key ring thumb drive is, I don't think we have those in England, but it sound like a good idea. Also, do I take it that you live in Orlando, if so you are so lucky......


Chez

 

[Momof2wCF]

thanks for the update, Chez! Would you consider doing a trip report? It would be fun to read the *British* perspective. (not to mention the CF perspective)

 

[Camster0307]

Pigeonmom - Thanks for your input. My equipment company is Apria also & I know they do alot of business in Fla. They always wind up getting me what I need, but give me a hard time about it. It's like they want to try to get me to bring as much of my own stuff as possible so it's less work for them. We've been going every year for the past 9 yrs. and I've gotten pretty skilled at how to get what my daughter needs down there.

As far as the O2 is concerned: I've already arranged with the airline to have it in place for our flight. My daughter doesn't need it continuously but, I'm with you on this, better safe than sorry. The tank Apria wants me to bring is my portable liquid O2 (empty). They'll deliver a stationary liquid tank to my hotel and I'll fill my portable off of that to bring into the parks. Apria is telling me it may be "too hard" for them to find me a portable tank to use for the week down there --that's why they want me to bring my own. This is the first time they've given me a hard time about it. I still have a month & half before our trip, so I've told them to get working on it now! I have ENOUGH equipment to bring already!

 

[junebugTN]

Hi,

I have one teeny bit to add to all this great info....

I have travelled frequently in the last year to Orlando with a nebulizer, and have never had any problems. However, if you think you will need to use it on the plane, please consider calling the airline in advance. Delta informed me that they have no problem with you bringing the medical equipment on board, but if you think you'll need to use it in-flight, there's some special paperwork that has to be filled out by your doctor and shipped to Delta for approval first. They said it can take a few days, so I'd call them as early as you can.

I don't know what other airlines' policies are, but I'd guess they're similar. Best of luck to you in your travels!

June