When I was looking for tips for taking a tube fed kid to Disney I couldn’t find much information. So I’m hoping this can be a resource to someone else.
This is Rae.
Rae is tube fed by her pump about 15 hours a day. She is hooked up mostly at night then half of the day. We adjust it as needed as long as she gets 700 ml a day.
I don’t know why, but I felt much more overwhelmed going to Disney with Rae’s gtube than I did when we went back in March with her NG tube. I think it was partially the staph infection she’s STILL fighting (No joke, she’s been on antibiotics continuously since the beginning of october and has been hospitalized to try to clear it up and it’s still not better.) or maybe that until the day before we left, I had never changed her gtube on my own, so I was afraid of it getting pulled and not having a clue of what to do.
But I learned and we went and it was an incredible trip!
As far as her supplies went, this is what I brought:
3 backpacks, extra Mic-key, 2 extensions, 5 ml syringes, gloves, gauze, 60 ml syringes, (in case we would do bolus feeds) 10 bags, her pump, charger, and gtube pads (Disney Princess ones of course!).
**Not pictured, we also brought her pole, 3 cans of her formula, and ice packs to keep her formula cold.**
I did have someone on the Feeding Tube Awareness page suggest bringing a command hook to hang up the bag and put the pump on a chair next to it instead of lugging around her pole. But Rae is a horrible sleeper, wakes up distraught a few times a night and I wouldn’t trust a command hook to hold up the bag for her at this age.
In the parks we ended up going to Guest Relations and explaining about Rae’s tube and they gave us a red pass to be able to use the stroller as a wheelchair. This meant we could keep her in the stroller when we walked through the lines. This was especially ideal for the times she was hooked up to her pump so she didn’t have to have as much strain on her back for those long waits. They also have handicap seating available in all their theaters so we could sit in the back with her in the stroller during those times as well. Make sure the red band is visible whenever you are about to go in a line though, almost every time we went in to a line with the stroller they would try to redirect me to stroller parking before they saw the band.
On our last day we chose to do bolus feeds after a long week of lugging around her backpack and pump. There are baby care centers where moms can nurse, change diapers and take care of any needs a child has and I’m sure it would be a great place to set up a feed, but it was pouring down rain when we needed to do one, so we set it up outside on a bench. No one stared or said anything rude, so I considered that a win!
This is what we brought into the parks everyday just in case anything were to happen to her gtube:
Backup mic-key, gloves (like I said, she has a staph infection, so we have to be extra cautious), gauze, KY, (disclaimer for non-tubie parents: this is for making the tube easier to go into her stoma, not for a quickie. I don’t think Mickey would approve) 60 ml syringe, 10 ml syringe to fill the balloon with, formula, extra bag, and an extra extension.
We drove down to Orlando from Northern VA. It takes about 14 hours to drive down. We did skip her evening feed that night, because we haven’t quite figured out how to keep her from unplugging herself when we’re in the car. This just meant we did a few extra hours the next day during the day.
I don’t have any tips about flying with tube feeding stuff. Driving stressed me out enough, I couldn’t imagine trying to get all her supplies on a plane…
Overall though the trip went great and tube feeding wasn’t nearly as hard as I thought it would be in the parks!