feeding tube question

[smidgy]

hubby now has a feeding tube due to dysphagia (swallowing difficulty) hopefully.. IF we go on our April trip, it will either be removed or he can eat somethings.. sigh..

I totally understand that prices on many meals are based on the experience. that is not what my question in about.

does anyone have any experience with dealing with a feeding tube at disney? did you have the "food" delivered? what about equipment for "delivering the "food"? if he can, at athat point, eat a few things, is there anyway to to order a "soft" diet? (although I really can't see myslef sitting down to munch on ribs at Boatwrights, while he can't) sigh..
this trip probably won't happen. but Iknow, with disney, planning is so important, so I have to plan as if it will happen.. if there's a chance we could still go, I don't care if I nibble on a baloney sandwich when he's not looking and we don't eat anything else at all.. he just wants to BE there after all he's been through this year..
(but I really dont' think it will happen )

 

[lanejudy]

he just wants to BE there after all he's been through this year

Aw, I don’t have experience with feeding tubes but wanted to say I hope you can go — we’ve had to cancel s couple of trips and that is so disappointing. Good luck to you both!

 

[mamabunny]

I don't have a feeding tube either, and no experience, but like @lanejudy I just wanted to add my best wishes for a great trip!

We have had to cancel our trip 3 times since the first week of January, when I was in an accident, and basically broke the right side of my body. Looking forward to my next trip is what keeps me going right now, and powering my way through physical therapy.

From this page on Disney World's website, I found this for you:

Contact Us with Additional Questions
For other questions related to food allergies and other special dietary needs and requests, contact us at Special.Diets@DisneyWorld.com. Our team will assist you in navigating the dining process.

​

I hope they can maybe help answer your questions, and help you plan a bit!

​

 

[SueM in MN]

Sorry to hear about his issues and hope things improve.

We don’t have experience with feeding tube, but have had medical supplies sent to WDW. Work with your current supplier to have what you will need shipped to WDW.
They should be able to help you with questions regarding splitting your order for the month - depending on when we are going in the month, we may need to order quantities differently for insurance purposes to make sure we don’t have more quantity in one month than insurance will pay for.
Items shipped to resorts typically have a $5 per package WDW delivery/handling fee. They have waived that for us on multiple trips when we explained it was medical supplies. I have been told that is policy at all WDW resorts. They can see it is medical supplies from the return address.

You can carry a ‘reasonable’ amount of liquid thru security at the airport. Keep it separated out and you need to declare it as ‘medical liquid’ at the TSA checkpoint. Usually a 24 hour supply would be considered reasonable. You can also carry on a reasonable amount of supplies and you do want to do that so you have supplies in case your checked bags get delayed. If a bag only contains medical supplies, it does not count toward your carry on or checked bag allowance (no charge)

At the parks - contacting the special diet department, as mamabunny suggested, is a good idea. The counter service restaurants may not have many resources to help you, but some of them may have items on the menu that are already soft (it may be mostly dessert - and don’t forget Dole Whips if he can do cold items).
The table service restaurants should at least have a blender available to blend foods into a soft/blended diet for you. The chef may also have some tricks up their sleeve to come up with dome items he can eat.
First Aid should be able to store some supplies and tube feeding for you - they are heavy and the lockers at park entrance may get too warm. First Aid also has private treatment rooms where you could do a feeding. Let the First Aid staff know what you need so they can assign you an appropriate room.

 

[Bearshouse]

DS is tube fed (g-tube) and eats orally. We always bring our own formula since it is specially made for tube feedings. DS has dysphagia with his other disabilities. His swallow study still allows him to eat fish, pureed foods, and soft melt in your mouth food. We always get with special diets. We had a chef once come up with a dish on the fly and we learned that salmon can be cooked medium and our DS loved it. Not all chef's are as accommodating but some really go out of their way for DS to have a very tasteful meal. Those are the restaurants we go back to each trip. Not sure if your hubby can swallow food orally but this is what we can do. We use First Aid for feedings so it is more private. Whatever you decide Disney is a week of just being "normal". Also I would ask Hubby what he wants to do about you eating, communication is key. Hope you have an amazing trip.

 

[redberyl]

We tried having my daughters formula shipped to the resort, but it didn' arrive in time so we had to bring it with us. Our supply company is not very reliable. Then it arrived halfway through the trip so we had to lug it Back home. On the way down we brought a whole weeks worth of formula onto the plane, had a backpack with nothing but formula. I just said it was for a gtubes and security let us through. Since that trip I've gotten permission from her doctor just to use Pediasure while on vacation, since you can but it anywhere. (Her usual formula comes from the supply company, can' find it in stores). We bring a few cans of formula, then go to the store and buy Pediasure when we get there. Its pricey but a lot easier for us. Another option is to order a case from Amazon and have it shipped a few days before your trip. Again pricey, but their shipping is more reliable than my supply company

 

[redberyl]

We tried having my daughters formula shipped to the resort, but it didn' arrive in time so we had to bring it with us. Our supply company is not very reliable. Then it arrived halfway through the trip so we had to lug it Back home. On the way down we brought a whole weeks worth of formula onto the plane, had a backpack with nothing but formula. I just said it was for a gtubes and security let us through. Since that trip I've gotten permission from her doctor just to use Pediasure while on vacation, since you can but it anywhere. (Her usual formula comes from the supply company, can' find it in stores). We bring a few cans of formula, then go to the store and buy Pediasure when we get there. Its pricey but a lot easier for us. Another option is to order a case from Amazon and have it shipped a few days before your trip. Again pricey, but their shipping is more reliable than my supply company

 

[ButterflyEffect]

My daughter is on enteral feeds as she is NPO. So a little different from your hubby since my daughter takes nothing by mouth.
We have done three trips to Disney and feeding her is no problem for us, no different than anywhere else because she is always on a continuous feed no matter where we are. First Aid is great for getting feeds ready and cleaning out the old ones (if you are using a pump). They will let you store items there but we never do because we are always afraid of forgetting meds or supplies there at the end of the night.
Restaurants have never charged us for our daughter, they mark her as a non-diner. We don't ask them to do this, it is their policy as of June 2015. This is true for character and non-character dining. If your husband eats something by mouth then he will most likely be charged I would think.
On the plane you can take as much liquid as you need for your trip. Do not check anything as far as feeds or medical supplies that you can't do without. We take three cases (yes, cases!) of liquid food in our carry-on, a few liters of sterile water, normal saline, liquid meds, etc. and they have no problem with it. Just be prepared for everything to be scanned/swabbed/checked which can take time. We contact TSA cares to help us through security since we have so much liquids and equipment with us. As mentioned previously, you can have an entire checked suitcase dedicated to medical supplies that you will not be charged for. You just tell them that it is a medical bag. You can take as many carry-ons as needed for medical supplies. They do not count towards your limit. For example, we had two carry-ons of formula, a feeding pump, nebulizer, suction machine, diapering supplies, a small suitcase of liquid and non liquid meds and then regular enteral feeding supplies as well. We also gate checked her walker and wheelchair.
I describe all this so that you can be sure they have seen it all before at Disney and the airport and you will be fine! I hope you are able to take your trip!
I agree with a pp that you should talk to your husband about what the rest of the family will eat. Would he really expect you all not to eat any hot/tasty food while he has a tube? I would have that conversations sooner rather than later so you don't worry about that aspect of the trip.