Considering a Cruise with our Medically Fragile Kiddo - Looking for Experiences

[PurpleKomodo]

We are looking at potentially cruising next summer. Our kids will be 10, 6, and 4. Our 4 year old has a neuromuscular disease and uses a wheelchair, has a trach, g-tube, etc. During the day, he is able to use a manual wheelchair and needs minimal medical intervention (aside from tube feedings). But, we typically prefer easy access to his suction machine at minimum when out and about. At night he sleeps on a ventilator. So, I am looking for experiences with cruising and disabilities. Main topics I am thinking about are:
- outlets (can we use power strips)
- pros and cons of accessible staterooms (we don't need/want a roll in shower because of his age)
- any accessibility things to note on the ship, at the port, on the island, etc.
- any rate changes for people who will not eat or drink a darn thing provided
- can we bring a collapsible wagon to move equipment around the ship.

Any other tips or experiences or advice?

 

[clm10308]

I have no experience, but the first thing that popped into my head is lack of hospital access. My sister has a child with some special needs, although not as severe as you described, and she would not be comfortable with the limited access to medical care should it be needed. They can go weeks without a trip to the ER, but…

 

[PurpleKomodo]

I have no experience, but the first thing that popped into my head is lack of hospital access. My sister has a child with some special needs, although not as severe as you described, and she would not be comfortable with the limited access to medical care should it be needed. They can go weeks without a trip to the ER, but…

That is not a major concern for us. Everyone's needs are different. We go years without an ER trip and bring everything with us that would allow us to easily handle most issues. We always travel with back up trachs and g-tubes. If we routinely had emergencies, I would feel differently, but we don't. Medically complex is probably a more accurate way to describe him as opposed to fragile at this point.

 

[mom2diskids]

No experience with a medically fragile kiddo, but there are plenty of outlets and no power strips allowed on board. Even if you don’t need the HA shower, the HA room might be good because it is larger than a typical stateroom and would be easier with multiple people to maneuver in, although with 5 people you may need to look at 2 connected staterooms, most only accommodate 4.

 

[SteveMouse]

I use a power chair and have very limited mobility. You would need to discuss power needs with the cruise line. Surge protectors are not permitted. DCL will generally provide approved power strips on request. There are a very limited number of outlets available.

You would likely want an accessible cabin. Accessible cabins always have doors that will accommodate a wheelchair (check measurements). They tend to have a little extra floor area.

I would not expect any discount. You may be consuming less food, but you may be consuming more electricity or receiving other attention. Consider it a wash and be done with it.

Cruise ship elevators are much smaller than land-based counterparts. There is not alot of extra room. You will find passages, especially near staterooms. to be comparatively narrow. Two people would be uncomfortable walking abreast.

 

[SteveMouse]

I use a power chair and have very limited mobility. You would need to discuss power needs with the cruise line. Surge protectors are not permitted. DCL will generally provide approved power strips on request. There are a very limited number of outlets available.

You would likely want an accessible cabin. Accessible cabins always have doors that will accommodate a wheelchair (check measurements). They tend to have a little extra floor area.

I would not expect any discount. You may be consuming less food, but you may be consuming more electricity or receiving other attention. Consider it a wash and be done with it.

Cruise ship elevators are much smaller than land-based counterparts. There is not alot of extra room. You will find passages, especially near staterooms. to be comparatively narrow. Two people would be uncomfortable walking abreast.

You may find this list helpful:

https://disneycruise.disney.go.com/faq/prohibited-items/list/

 

[PurpleKomodo]

I use a power chair and have very limited mobility. You would need to discuss power needs with the cruise line. Surge protectors are not permitted. DCL will generally provide approved power strips on request. There are a very limited number of outlets available.

You would likely want an accessible cabin. Accessible cabins always have doors that will accommodate a wheelchair (check measurements). They tend to have a little extra floor area.

I would not expect any discount. You may be consuming less food, but you may be consuming more electricity or receiving other attention. Consider it a wash and be done with it.

Cruise ship elevators are much smaller than land-based counterparts. There is not alot of extra room. You will find passages, especially near staterooms. to be comparatively narrow. Two people would be uncomfortable walking abreast.

Hmmm... No power strips huh? I'll add that to our list when we call this week. We need to plug in a vent, feed pump, charge suction, and charge our own mobile devices at minimum. And that is if we don't bring the heater for his vent and bring our battery powered pulse-ox. We also need to blend tube feed daily. Power access could be a real issue. We will talk to DCL about our needs in this area and see what they say.

 

[SteveMouse]

You may find this list helpful:

https://disneycruise.disney.go.com/faq/prohibited-items/list/

And here’s an old thread with pictures of the outlets on the Magic. note the lack of support for grounded plugs.

https://www.disboards.com/threads/magic-electric-outlets.3627976/

 

[SteveMouse]

Hmmm... No power strips huh? I'll add that to our list when we call this week. We need to plug in a vent, feed pump, charge suction, and charge our own mobile devices at minimum. And that is if we don't bring the heater for his vent and bring our battery powered pulse-ox. We also need to blend tube feed daily. Power access could be a real issue. We will talk to DCL about our needs in this area and see what they say.

I’m sorry about the following:

Heaters are not usually welcomed aboard cruise ships due to issues with fire. That’s one of the main reasons for concern about electrical equipment (the other being the ship’s capacity to supply the power). I’m not sure how much power your listed devices require (save the mobile phones). I don’t think a ventilator has that much of a draw. Heaters definitely do. I can’t imagine that there’s a bunch of draw from a feeding tube pump. There can be, and often is, with blenders. That’s why they can grind ice snd are, I think, prohibited. the ship‘s cabins do have separate USB ports.

As I stated earlier, the ship will provide power strips on request.

You really don’t want to trip a circuit breaker. While it’s not difficult to reset, it may take time, since the engineering team needs to get to your cabin and may want to evaluate the circuit prior to reactivating it.

While there is typically a small beverage cooler in the cabin, it is small. if you need significant refrigeration space, that is also something you may want to discuss with the cruise line.

 

[PurpleKomodo]

I’m sorry about the filling.

Heaters are not usually welcomed aboard cruise ships due to issues with fire. That’s one of the main reasons for concern about electrical equipment (the other being the ship’s capacity to supply the power). I’m not sure how much power your listed devices require (save the mobile phones). I don’t think a ventilator has that much of a draw. Heaters definitely do. I can’t imagine that there’s a bunch of draw from a feeding tube pump. There can be, and often is, with blenders. That’s why they can grind ice snd are, I think, prohibited. the ship‘s cabins do have separate USB ports.

As I stated earlier, the ship will provide power strips on request.

You really don’t want to trip a circuit breaker. While it’s not difficult to reset, it may take time, since the engineering team needs to get to your cabin and may want to evaluate the circuit prior to reactivating it.

While there is typically a small beverage cooler in the cabin, it is small. if you need significant refrigeration space, that is also something you may want to discuss with the cruise line.

Refrigeration is definitely on our list to talk with them about. We need to refrigerate the 24 hour blended mix and a few ingredients. Gotta think about if we can get by without a blender (insert vigorous shaking) if that one is a no go as far as making feed. The mix is only good for 48 hours max so we will have to make some on the ship no matter how we slice it.

 

[SteveMouse]

I don’t know if any of the bars can blend your ingredient.

 

[lanejudy]

Standard staterooms have 23" doorways from the hall unto the stateroom. Then most have a slightly wider hall from the doorway post the closets and bathrooms into the bedroom. A narrow passage around the bed. Even if his chair fits through the door, it may not get past the bed. An accessible room has at least a 32" doorway and an open path through the room, plus wheelchair accessible bathroom (otherwise a step up into the bathrooms).

No powerstrips, but they will allow you to borrow one and/or an extension cord. There are USB ports in the room, more since the recent refurbs. Electric blenders are not allows -- can you use a battery-operated one? The fridges are similar to a hotel room.

Each of the kids' club spaces has Open House times where you may accompany him to attend to any needs. The youth CMs will not assist with personal needs other than little ones in the nursery.

I will say our first DCL cruise was about 10 years ago and there was a young girl on a Wish trip -- while I won't pretend to know all that she needed, she was in a wheelchair with quite a bit of equipment attached. So I do think they can work with you. I suggest contact Special Services, Phone: (407) 566-3602, Email: SpecialServices@disneycruise.com

 

[lanejudy]

I don’t know if any of the bars can blend your ingredient.

Unlikely - for the same reason the kitchens won't heat your food, nor will restaurants at WDW. It would be against health regulations.

 

[Betty Rohrer]

Unlikely - for the same reason the kitchens won't heat your food, nor will restaurants at WDW. It would be against health regulations.

I agree and that is true outside of Disney also.

 

[SteveMouse]

Island-side, The Bahamas use the same format for electrical plugs as the US.

Finding wheelchair-accessible ground transportation can be challenging. Do not expect shore excursions to be accessible, unless specifically noted. Tender ports may or may not be accessible, depending upon the weather of the day.

Life jackets are available for use on the ship and at Castaway Cay.

 

[Groot]

We are looking at potentially cruising next summer. Our kids will be 10, 6, and 4. Our 4 year old has a neuromuscular disease and uses a wheelchair, has a trach, g-tube, etc. During the day, he is able to use a manual wheelchair and needs minimal medical intervention (aside from tube feedings). But, we typically prefer easy access to his suction machine at minimum when out and about. At night he sleeps on a ventilator. So, I am looking for experiences with cruising and disabilities. Main topics I am thinking about are:
- outlets (can we use power strips)

I doubt it.

- pros and cons of accessible staterooms (we don't need/want a roll in shower because of his age)

I think all of the accessible staterooms have a roll in shower because it covers the widest range of bathing needs. Maybe you could rent a child-sized shower chair like this one?

- any accessibility things to note on the ship, at the port, on the island, etc.

Depends on what cruise ship, itinerary, you’re going on.

- any rate changes for people who will not eat or drink a darn thing provided

I’m not sure on that.

- can we bring a collapsible wagon to move equipment around the ship.

Not 100% sure on that, especially depending on the size and stuff. Does your child’s wheelchair have a vent tray like this? That may be one solution.

 

[PurpleKomodo]

My husband and I have been talking about all the options (a ton!) and we think we could make a roll in shower work. As far as his wheelchair and a vent tray, his power chair holds all his equipment, but because of his size, his manual chair cannot have a tray like that on it. It won't fit. He also would not be able to self-propel it with the weight of his stuff on it.

 

[SteveMouse]

Are you planning to fly or drive to the departure port?

You probably want to ensure at least one adult and child take valid passports in case if a need to return via air to the US. While birth certificates or other documentation may be used on a closed-loop cruise, air transportation relies on passports.

I think the cruise line may have concerns about holding things in refrigeration for you, but they may be able to provide a second unit for your room. I could see a liability issue for them, in terms of maintaining temperature- if it’s always in your possession, the cruise line can’t mis-manage it. I don’t know if the ship’s medical service can accommodate medication/medical supplies storage.