G Tube... formula and supplies through the airport HELP!

[Bitsmommy]

So we just booked our trip to Disney, for September. I can't wait!! We went last year with the baby, with all of his special needs and had a great time. Since then, he requires a Gtube pump and a pulse ox machine. In addition, his formula is now canned, not powdered and prescription. So we can't just get it at Walmart when we get there.

So, I NEED HELP!! How do we get the pump, the pole and the pulse ox on the airplane???? I can see putting the pump and pulse ox in our luggage, but as for the pole and the other supplies I have no idea. The cans are heavy. I can't risk them being lost and I will need several cans of formula, about 20ish at his current caloric needs. Not to mention the pole, I have no idea how I am going to get this to Disney World without going over the weight or baggage limit.

I am positive that I am not the only person who has had this issue. Help!!!

 

[Piper]

Pack all the medical supplies together. They do not count against your luggage limit. Others who know more than I do will be here to help soon, but I just wanted to relieve your stress just a little as quickly as possible!

 

[Bitsmommy]

Thanks!!!!!!!!!!!!

 

[SueM in MN]

To add to what Piper posted,
Post # 15 of the disABILITIES FAQs thread has information about air travel, including information about TSA screening. You can find that thread near the top of this board or get to it by clicking the link in my signature.

I would definitely carry the pulse ox and pump on board. For the question about the pole, hopefully someone with experience will chime in, but I know some people have figured out another way to do the feedings without having a pole. If the pole will collapse and fit inside the overhead compartment, you would be able to carry it in and stow it there. If it is too big, you will need to gate check it.

For the formula, you should carry a few days supply on board with you. You are not likely to need it, but knowing you have it will make you more comfortable. Some people have had the rest of their formal sent to the resort. You can work with your supplier on that.

 

[brat]

It is medical equipment and allowed as such. The pole will be stored by flight atendants during the flight. We bring Drs notes on their letterhead when we travel, I also call ahead and ask how the want it packaged for bringing through the airport.Most of the time they want it in the orginal box.
We have also rented both pump and pole from nursing service instead of bring our own.Same for formula, order in advance for delivery to pharmacy nearest your hotel(some will deliver to hotels) or order through online pharm direct deliver to your hotel or the nursing agentcy you rent equipment from.

 

[Bitsmommy]

To add to what Piper posted,
Post # 15 of the disABILITIES FAQs thread has information about air travel, including information about TSA screening. You can find that thread near the top of this board or get to it by clicking the link in my signature.

I would definitely carry the pulse ox and pump on board. For the question about the pole, hopefully someone with experience will chime in, but I know some people have figured out another way to do the feedings without having a pole. If the pole will collapse and fit inside the overhead compartment, you would be able to carry it in and stow it there. If it is too big, you will need to gate check it.

For the formula, you should carry a few days supply on board with you. You are not likely to need it, but knowing you have it will make you more comfortable. Some people have had the rest of their formal sent to the resort. You can work with your supplier on that.

I was hoping to avoid the pole entirely, but I didn't want to get the the room and realize that we had no way to hang the bag, ect. We are staying at AKL. IF ANYONE HAS ANY EXPERIENCE WITH CREATIVE WAYS TO DO THIS, PLEASE CHIME IN!!!!

 

[Bitsmommy]

It is medical equipment and allowed as such. The pole will be stored by flight atendants during the flight. We bring Drs notes on their letterhead when we travel, I also call ahead and ask how the want it packaged for bringing through the airport.Most of the time they want it in the orginal box.
We have also rented both pump and pole from nursing service instead of bring our own.Same for formula, order in advance for delivery to pharmacy nearest your hotel(some will deliver to hotels) or order through online pharm direct deliver to your hotel or the nursing agentcy you rent equipment from.

I would love it if you could tell me how to change the script over (for the formula). Currently, everything comes from our DME and we get a one month supply at a time. I certainly hope we don't need the original box because it never had a box. We do, however, have a backpack that the pump and one day's worth of supplies can be stored in.

 

[peemagg]

I have heard of some taking the shade off a lamp and turning that into the pole (with the light off of course).

I would contact your DME and ask that they send the amount of formula that you need down to your hotel. I would also be sure to carry enough supplies for a few days like Sue suggested.

I also know that there are places down there that will rent a pole to you if you need it. Just google rental supplies.

 

[goofieslonglostsis]

I was hoping to avoid the pole entirely, but I didn't want to get the the room and realize that we had no way to hang the bag, ect. We are staying at AKL. IF ANYONE HAS ANY EXPERIENCE WITH CREATIVE WAYS TO DO THIS, PLEASE CHIME IN!!!!

Obviously just MHO, but a pole is just........well...... a pain in the you-know what. Don't know if he feeds by pump or using gravity, but either way a bit of out-of-the-box thinking is enough to feed without a stickler like a pole. And not just the pole. Obviously the nutrition is needed but there are so many things you can be creative with to make this feed ones own needs, likes and desires.

If height doesn't matter for her way of feeding, simply putting the bag on the nightstand does the trick. You'll find those besides any of the beds. If you end up with a kingbed + pull out couch at AKL you could push the nightstand a bit closer to the pull out if he's sleeping on there.

If height does matter; bring along some velcro and if her feeding bags only have small 'hang up' holes perhaps a piece of rope. Pull rope through the holes in the bag or if it fits; the velcro itself. Velcro it alongside the.. sjeez what do you call it in english... bedpost and voilà. Depending on things you could even just hang her backpack up during the nights. Really, there are so many places you can hang up a feeding bag into, esp. when having some velcro etc. within reach if need be.

If it's more upto your personal desire, there are also travelsized poles or metalic set ups that are small in size but are specifically made for carrying feedingbags and easy 'storage'. If you or DH are the slightest welding savvy, those can very very easily also be made yourself (read; totally be made to fit your and DS's likes, wants and needs).

I personally use a pump that doesn't care about height, being kept horizontal or whatever. Easy for carrying it in more fashionable bags . During the night I use the metalic "backpack" set up. Pump gets screwed onto it, hang bag on it, velcro bag tight, dump the set up on my night stand and be done with it. Makes me a lot more mobile, which also is nice if waking up in the night and needing to go to the bathroom. I just throw the set up on my lap, wheel to the bathroom and be done. Poles and me do not match, so to say.

Allthough there are quite some folks on here that have a feeding tube, if you want even more info and traveltips, I'ld highly recommend visiting the Oley Foundation. Great info, incl. on travel, medical info, you name it. Good board, nice exchange going on about all things that come with feeding. Anything ranging from serious to step-by-step-guides on how to make any fahsionable bag into a easy to use feedingbag if one doesn't want to use the ugly standard bags. There's even an exchange-part on the board where folks can exchange supplies if one person doesn't use them and another wants to try them or whatever. Google will show you the way to them.

 

[pumpkinboy]

OK, my now 13 yr old Pumpkinboy (redhead born in October) has a G-tube and pump we need to bring with us, and a pulse-ox monitor, all of which we bring on the plane. My boy has had a g-tube for 6 yrs now, and we've done WDW more than 7 times in that period with him, so we have a lot of practice.

I was hoping to avoid the pole entirely, but I didn't want to get the the room and realize that we had no way to hang the bag, ect. We are staying at AKL. IF ANYONE HAS ANY EXPERIENCE WITH CREATIVE WAYS TO DO THIS, PLEASE CHIME IN!!!!

OK, that's me.
Here's what we do:
First of all, we leave the pole at home. Unless the g-tube is gravity fed, you can live with just the backback and pump (at least we can). During the day, we just use the pump in the backpack, like he does at school. At night, when we charge the pump, we do an overnight drip (slow feed) and we use Command adhesive hooks on the wall of the hotel room near DS's bed to hang the bag of formula. This has worked really well for us. When we leave the hotel, the hooks come down and get packed again in the Med bag.

As for your other concerns:
For packing, we bring a bag with all of DS's meds and small equipment, like the pulse-ox. We pack the backpack with the pump, a bag full of food and enough extra cans of food to get us thru the day. The full supply of food for the rest of the trip is checked baggage (we send a case). Alternatively, you could include it in another bag that you are checking; our strategy has been to pack all equipment (including his special diapers and chux) in a single bag, label it "Medical Equipment and Supplies" (using our labeler), plus your child's name and your cell phone # (in case it is misdirected), and check it thru. We have always had the airlines waive baggage fees for medical stuff.

Getting thru the airport and TSA, be sure to have all the meds and maybe some extra food in one carry-on (take out and identify all liquids for TSA, and have them in quart-sized ziploc bags). Also open up the backpack, identifying all of the liquids for TSA. In our DS's case, it is obvious that he has special needs, but as your child is still a baby, you may need to explain a bit.

But all in all, this strategy has worked well for us on multiple trips. We're going again in a month to both Disney's Vero Beach resort and WDW, so I am making sure that I have extra Command adhesive strips for the hooks I already have (heading to Staples today, in fact, as they have a whole Command section now).

Feel free to ask me specific questions if I have not assuaged all of your worries about travelling with all of your specialized equipment.

pkb

 

[Bitsmommy]

OMG!!! Thank you so much!!! Adhesive strips!!! That is the best idea ever!!! I knew that we could do it without the pole!!!! I just needed to know how!!!


When you send the case of formula with the checked luggage, do you just leave it in the box or do you put it in a suitcase??? Do you worry that it will explode in flight because of the pressure?? What special precautions do you take. My biggest fear is that we will make it there and his formula won't!! But, I really don't want to travel through the airport with a 6 year old, a 1 year old and 20 cans of formula! That could start to stink quickly!

 

[Bitsmommy]

To add to what Piper posted,
Post # 15 of the disABILITIES FAQs thread has information about air travel, including information about TSA screening. You can find that thread near the top of this board or get to it by clicking the link in my signature.

I would definitely carry the pulse ox and pump on board. For the question about the pole, hopefully someone with experience will chime in, but I know some people have figured out another way to do the feedings without having a pole. If the pole will collapse and fit inside the overhead compartment, you would be able to carry it in and stow it there. If it is too big, you will need to gate check it.

For the formula, you should carry a few days supply on board with you. You are not likely to need it, but knowing you have it will make you more comfortable. Some people have had the rest of their formal sent to the resort. You can work with your supplier on that.

Thanks! I actually already read the FAQ page before I posted this. In addition, I had already found this information myself before heading here to ask people that had some experience. I appreciate your idea though!

 

[pumpkinboy]

We just take the full case, perhaps with an extra tough plastic wrapper, label the heck out of it, slap a DME tag on it and check it thru. Just in case, I bring a bunch of cans in other suitcases and in our Med bag. The worst case scenario is the case not showing up, so we always have at least a 48 hour supply to tide us over until we can get to the pharmacy.

So, the advice from me: Command hook to hang the bag in the hotel; check a case of food thru to WDW (extra tough wrapper on the case tho).

Good luck!

 

[Bitsmommy]

We just take the full case, perhaps with an extra tough plastic wrapper, label the heck out of it, slap a DME tag on it and check it thru. Just in case, I bring a bunch of cans in other suitcases and in our Med bag. The worst case scenario is the case not showing up, so we always have at least a 48 hour supply to tide us over until we can get to the pharmacy.

So, the advice from me: Command hook to hang the bag in the hotel; check a case of food thru to WDW (extra tough wrapper on the case tho).

Good luck!

You are amazing!! I just told my husband about the command hooks. He said you were a genius!!! We are actually heading to Huntsville next month. The older one has an obsession with space (this week). We plan on trying it out there!!!