Cross-Posted in Disability Thread - Tube Fed and Cruising

[PurpleKomodo]

I also posted in the disability thread, but am pretty desperate for some help so I am asking here too.

Has anyone cruised with a tube fed kiddo/person before? We leave in literally 5 days. Our cruise leaves port in 9 days. We are getting a serious run around corresponding with Special Services about our needs regarding our kiddo's tube feed. Our kiddo is 100 percent tube fed. All nutrition and hydration is delivered through his g-tube. He has a custom mix that is developed and signed off on by a dietician. We mix 24 hours worth of feed at a time. We have to bring all ingredients onto the ship. We have to bring extra onto the ship because there are another 5 days worth of vacation away from home after our cruise and we can't leave ingredients to roast in our van for four days. These are the current things they are telling us that we are corresponding with them about:

-- Our feed mix has been approved to "bring on board and consumed in our stateroom." Our kid eats when we eat. We will not be taking him back to the stateroom to eat while the rest of us are at the Frozen dinner, for example.
-- They are saying we can't take things off at Castaway Cay. Again, we will not be re-boarding the ship to feed our child 2-3 times while our family is enjoying the beach.
-- They are saying we may not be allowed to take some things back off of the ship. Again, we have to take overstock with us because our vacation does not end when our cruise ends and our ingredients need to stay temperature controlled (not necessarily refrigerated, but not over 100 degrees from sitting in a hot car).

I have never had this kind of difficulty with Disney and I am getting pretty frustrated. I don't want to be hassled by security our whole cruise for just feeding our kid the only way he can be fed. We have already had to concede our cooler size (taking two smaller ones instead of one bigger one) and figure out a way to mix his food without a blender. There is nothing else we can concede on and be able to keep him safe and allow us to actually have a good time as a family on this cruise. We also filled out the form months ago indicating all our needs and no one ever reached out to us. I am feeling defeated and much less than magical. Anyone have any tips. Is there anyone above front line Special Services I can escalate this to? It just doesn't align with the typical Disney values regarding accommodating people with disabilities.

 

[auntlynne]

Is this brought on as a powder or fresh produce / meat / milk? Seems like a powder (as infant formula would be) would be allowed. (I would check rules for that). Check USDA rules for bringing food products back into the country.

As far as going onto Castaway Cay, they don’t check bags. Coming back in, they do. If you are not bringing any food back in the ship, I don’t see the issue.

If you had never asked, I think you would have not have been “in the wrong” - if you are following USDA rules on transporting foods. Basically, no perishables brought on /taken off in commercially sealed containers. (It might mean single serving packages.

Blender - when Cruise lines won’t allow electric fans, they do allow USB powered ones. I would think the same thing would apply to a blender. (Concern over blowing the power circuit?)

Something like this:

 

[auntlynne]

Other posts on this board and Cruise Critic in previous years are showing only positive experiences with using a feeding tube onboard and bringing necessary formulas.

Is there something unique to your situation? Other than powders or liquids or syringes?

Will your stay after the cruise involve lodging that you can ship to or drop off supplies on your way to the ship?

 

[Disneyland_emily]

Probably the issue is it sounds like you are trying to bring consumable perishable food that would potentially violate agriculture laws which come with significant fines and could potentially “contaminate” onboard food supply. So I can see why they are concerned and it’s limited to the stateroom which is away from food consumption because they probably have zero idea what it involves.

If it’s just mixing powders and liquids with no actual “consumable food” like a baby formula you’ll probably have no issues but if it involves agricultural products yes it does get more complicated because that’s not DCL that’s the government…

 

[Snowwhyt]

To cover your self better, a letter from your physician stating the diet medically required as detailed as possible could help you as someone needs to make a judgment call. With your kindest eyes offer you physician letter “just in case you need that sort of thing”
The letter should list each equipment item used to care for the child and explain the attached diet structured to work in tandem with medication.
Have it on letterhead with a contact number if possible.

 

[PurpleKomodo]

UPDATE: We heard back from DCL. At this point, I think we will be okay. Castaway Cay is considered an extension of the ship, so we should be able to take our food off with us there. We were already planning to stay on the ship at Nassau so that is a non-issue. Essentially the rules on the ship about where we could feed out kiddo are due to concerns about allergen exposure for others. Luckily, out mix is incredibly allergen free, but they basically just told us to be careful about handling it, potential spills, etc, which we are. After clarification, it sounds like things won't be as difficult as the initial response from Special Services made it sound. We already have orders printed for all of his things. We have all medical equipment labeled. Hopefully all the work ahead will help the boarding process go smoothly.