G-tube dependent child

[MJAK]

My DD will be just shy of her 4th bday when we go to WDW in November. She currently is on her tube over night and eats little bits and pieces throughout the day. Just wondering if anyone has any words of advice about traveling with their Gtube supplies... Fed Ex to the hotel? Carry on luggage? Tips for the parks? Any advice is well received! Thanks!

 

[rjthkids]

I have a g-tube dependent 4 year old son, and had posted this very same question here the first time we traveled with him to WDW!

You are able to take all the formula you need with you and they will not charge you baggage fees for it because it is considered medical supplies. We ended up just taking it all with us and checking it in as baggage. The formula weighs a TON, so I don't know about shipping it, as I think that would get extremely expensive.

When I posted, I was also told that you can work something out with your medical supply company to have supplies shipped directly to the hotel. For our next trip, I am definitely going to explore this option more because it was definitely a logistical challenge to lug all the formula to the airport and from the airport to the hotel. Other than that, we didn't experience any problems.

HTH!

 

[mayaflysmama]

I've gone twice while DD was tube fed. The first time it was overnight feeds and the 2nd 24-hour feeds. I always carried all her feedings and supplies on and just put everything medical in one carry-on as then it does not count toward your total bags and there is no charge. I always carry a letter from the doctor with a list of what she needs just in case, but have never had to use it. That said, she is now on TPN and I am planning on just carrying on 2 days worth and then shipping the rest to the hotel. (FED-EX). I talked to our supplier and they are actually doing the shipping so it's no extra cost. I'd call whoever supplies your formula and ask them if they'd be willing to ship the amount you need to your hotel and carry maybe 48 hours worth with you on the plane. If it is not a canned formula I'd just carry it with you since it doesn't weigh much. I'd also recommend bringing an extra g-tube (if you use a button or tube you replace at home) so if there is a problem you are prepared.

 

[KPeveler]

I dunno if you are going to be doing any tube feeds in the park, but each park has a First Aid station where you can do tube feeds in a private environment. They can also store medications that need to be refrigerated.

I have never carried tube feeding equipment, but i always carry all of my must-have medical supplies in my carry on luggage. If you have a bag just of medical supplies (i.e. fill a back pack with only the medical equipment) it does not count toward checked luggage or as a carry on. So you can carry it with you and still be able to bring a backpack full of normal carry on stuff (dvds, books, etc)

 

[kellyw8863]

We carried on enough to get us through 24 hours worth of feeds, as well as all of her meds and valuable medical equipment. However, our HHC shipped all of the "extras" directly to GKTW (it was her wish trip). When we placed our re-order, we basically asked for seven days worth of supplies to be sent directly there. They also shipped a week in advance so we had a chance to double check and make sure that everything had arrived before we got there. Anything that was left over at the end of the week, we tossed. A waste, but we didn't want to be carrying it home.

 

[My2CrazyGirls]

Take it from someone who was traveling on September 11, 2001...bring as much as you can on the plane! Make sure you have your feeding pump (if you use one), an extra mic-key button or whatever feeding tube you use, extentions, syringes, meds, formula etc.

Luckily we did not have children when we we flying on Sept. 11 and was grounded in the middle of the country for 4 days! Our 4 year old has a G-tube and we have done Disney twice (drove 14 hours) and we have flown one time but not to Disney. When we flew we did ship out supplies to our destination but made sure we had essentials with us.

Any other questions, please ask

 

[My2CrazyGirls]

Also, if you have a feeding pump, get a note from the pediatrician saying it and the other items are necessary on the flight.

 

[MJAK]

All GREAT advice! This is our first trip with her via plane... car trips I am a master at. Didn't consider the pump getting lost with luggage, etc! Thanks!