Traveling by plane!

sullyinCT · #1 03-14-2012, 08:08 AM

Hi all,

I am new to the forum, and the father of 5 children. Two of them were born with a severe form of Congential Muscular Dystrophy known as Walker Warburg Syndrome. My daughter Ava Rose, passed away at the age of 2.5 a few years ago. My daughter Keira just turned three and is doing well considering everything.

Keira is trached and vent dependent. While she does not need oxygen, she still needs 24 hour CPAP support from the vent (LTV 1150). Recently, she was granted a wish from Make-A-Wish, and we'll be going to Disney World next month. We'll be flying which will be an adventure in its own right.

I am looking for tips, words of encouragement, whatever you can give me because understandably, I am extremely nervous about flying. Her doctors have all assured me that she will be fine. I guess my nervousness isn't so much with her health as it is with all the logistics on what to pack, keeping the vent quiet, etc.

We will be traveling with three of her private duty nurses, so I know we have help, but I am still nervous! Did you have any problems getting your child's equipment/supplies through TSA and onboard the aircraft? How often did you have to suction the trach during the flight?

Any tips you all can provide would be greatly appreciated!

Thanks,

Brendan Sullivan

harleykarolynmom@aol.com · #2 03-17-2012, 09:29 PM

I am not help with the flying part but we are going to flordia in may I have made a packing list on a spreadsheet and have had all my daughters nurses ready and review it and add anything I missed. plus with it being saved on the computer I can just add things forget or take off things that I didn't use so I can pack better next time. I am also having her feeding supplies and diapers sent down by the dme to prevent me from having to pack them. Let me know how it goes for you we are taking 6 children and 6 adults so our numbers are good which will also help. And you might know already but when you fly if your medical stuff is the only things in a bag they can't charge you and it doesn't count at your carry on or checked bag limits. Have a great time
Marsha

harleykarolynmom@aol.com · #3 03-17-2012, 09:32 PM

you also might want to check this site out they have a ton of info and advicehttp://www.disboards.com/forumdisplay.php?f=20

Louise D · #4 03-19-2012, 09:33 PM

Welcome! you might want to post this in the ped trach section. Not everyone checks the vent page. We went to WDW in October. We do not have a vent but we do have all the trach equipment and a wheel chair to deal with. We flew Virgin America and things went very well. TSA suggested we get to the airport 3 hours before our flight because of all the medical stuff. It took us all of 10 min to check our bags through the scanners, so we had plenty of time to wait at the airport. I didn't care, I too was worried about TSA. We took a note from the Dr. of all our medical supplies but it was never needed. Please check my older posts. I think I gave the # for TSA, info about the Disney parks, and the # of the closest Childrens Hospital.

Have a good time,

Louise D

sullyinCT · #5 03-26-2012, 08:14 AM

My apologies for taking so long to read/respond to your replies. Thank you again for your advice!

One of the things I like best about Make-A-Wish is they keep assuring us not to worry about anything. We have sent them a list of all of Keira's necessary items for travel (serial numbers included), which they say will help us (and them for ordering thru their DME company) get thru TSA. We are from Connecticut, and flying out of JFK Airport in New York (approximately an hour away). Our flight leaves at 7am, so we're going to try to get there at least two hours before departure.

I have heard about the Disboards and will check them out later today. Thanks again

Brendan