24 hour tube feed 6 year old

[dmbfan]

Hello new here, I have a question and was hoping someone here could maybe help me. We are planning our trip to Disney for next summer, but I am concerned how this is going to happen with our 6 year son. He is J-tube feed around the clock, he does eat food by mouth, he does tire very easy, but his dream is to go to Disney world...We are going with some family, and because of my kids and my family's kids, we are going during summer vacation.

My questions are this? Do I need to get a home care place out there to supply me with the formula? He goes thru 6 box (look just like juice boxes) a day, also the IV pole and not to mention all the supplies I need. Our pump is protable, so we are good with that. Also do they have any areas in side the parks that would allow me to give meds, some need to be in the fridge, and I also need to be able to empty his g-tube back ( so he does not vomit, he has a contiunes drain out of his g-tube site) when it gets to full. Would prefer to not have to do this in a public bathroom, but I am thinking I might not have a choice.

This is still up in the air for at least our side of the family...there is alot of work that needs to go into this trip...I want him to be able to have a good time, cause besides his GI medical issues, he is a happy and very excitied kid...but I just don't know how he will do when it is all said and done.

Does anyone have any ideas or thoughts?

Thanks for any information you can provide me.

 

[Schmeck]

Each park has a first aid/childcare station that can handle your needs, no problem!

Is your son in a wheelchair? If not, and if you need to use a stroller as a wheelchair, go to guest services and get a Guest Assistance Card to show the cast members at each attraction. This will allow you to use a stroller in the queues for your son, so he won't tire as easily.

Check out the FAQs at the top of this forum for a lot of fantastic info/help!

Hope you have a great trip!

 

[RNMOM]

dmbfan,

I would also consider speaking with his providers and suppliers. Is it possible for him to be on a more concentrated formula for a short time? One that would allow him some time free from the pump?

I think there are so many families that go to WDW that your doctor, supplier and those you work with can link you to all you will need. If not, come here and we have so many experienced people that can help.

The first aid stations are available and I believe there may be some family type bathrooms for nursing/privacy. You might want to check the posts at the top for more information. The mods' have it organized quite well. I have seen people take some family members with very challenging issues and they had great times. It is important to plan and we will help.

 

[eternaldisneyfan]

I recently returned from Disney World and I have the same GI issues as your son-24 hour J tube feeds and G drain (and a trach, vent, electric wheelchair). I had a wonderful time. We carried my food in a small ice chest. You could also put the meds in there. My drain never got full...but I have dumped it in a toilet before. Be sure to order supplies early (syringes, food, lumen) and if it's close to the regular time-change the tube before you leave.


Christamae

 

[dclfun]

I've been on the Disney ships with all my equipment and have had the vendor deliver my tube feeding cans/bags, etc. to the ship directly. I'd definitely check with your vendor to see if it can be shipped to your resort from a local source or even shipped from your vendor directly then just bring a small amount with you on the plane and in your checked bags. ---Kathy