trach and vent at park and on cruise

[harleykarolynmom]

i will be taking my daughter who is trached and uses a vent at night to disney for 2 nights and a 7 day cruise. She is also in a wheelchair and g-tube fed and advice would be appriciated
thanks in advanced
Marsha

 

[SueM in MN]

Do you have any specific questions we can help with?

A little more information will help us to give you better advice, so I have a few questions for you.

1) How old is she?
2) Is she able to transfer? If not, is she small enough to lift out of the wheelchair?
3) If out of the wheelchair, how much support does she need to sit? Does she have good head control?
4) Is she able to tolerate movement or does she need very ‘tame’ attractions?
5) What sorts of things does she like/is she interested in?
6) Are there things she doesn’t like?

While you are waiting for some answers, I suggest you check out the disABILITIES FAQs thread. You can find it near the top of this board or follow the link in my signature.
Post #3 of that thread includes a lot of links, including a trip report from a poster named eternaldisneyfan who visited WDW with her family. eternaldisneyfan and her sister were both using power wheelchairs and vents.

 

[HowdyHeidi]

I am in the planning process now too for land and sea. I do not have experience with trachs, but do with g-tube. We had our travel agent talk to the RN at the Disney Cruise line and we were able to get some accommodations for both the resort and we plan to get a Guest Assistance Card, and a couple smallish things for the cruise that we need.

That being said, I know especially for the cruise, my child is not going to be able to join the kids programs (unless maybe I go in with him) because of Disney's policies. I probably would not have felt comfortable doing that anyhow and am traveling with extended family, so it is not a big issue, just we will not have the same experience as other families.

I also bought what I hope is a good travel insurance policy (that covers pre existing conditions) for trip cancellation or medical evacuation -- stuff like that. I had to get it within 21 days of deposit, fyi, for the pre existing condition waiver.

So I would definitely try to get in touch with the special needs/medical needs people at Disney/Disney Cruise Line to see how they can help you.

I still need to call the number for the airline...
As for what rides are good, I am still looking into that now...

Good luck! I'm right there with you on the information gathering!!!

 

[dclfun]

I have all of the above equipment ( except I am vent dependent 24/7) and have sailed with DCL many times. I always travel with back-up equipment such as an extra charger and vent. Of course you'll want your suction machine and plenty of disposables. If she isn't using her vent during the day and it only needs to be plugged in, then be sure to bring a power strip to get it close to the bed as there are no outlets right by the nightstand or lower twin berth. You can either borrow or bring a three-prong outlet extension cord. If you do use the one the ship has you'll have to return it and they'll put a pending charge on your account until it's returned. It's much easier to bring your own. The children's club cannot provide any medical care or 1:1 care but you can go in with her to participate. Accessible seating is available in the back of the WD theater and in the Buena Vista theater for movies. If she can transfer you can sit up front in the WD theater but need to get there early as you'll need to be brought down an elevator to a side entrance. There's a medical center onboard in case of emergencies. I've never had to visit there. You can request a refrigerator for medical reasons- this requires that you send in a Special Services form. This form does not need to be filled out by a physician- just write in what she needs and fax or scan and email back. As to tube feeding, they can puree foods or you can bring your own canned food. You can no longer ship ANY food ahead of time so this will have to be brought on. If you are doing WDW beforehand you can have your vendor ship to the resort. If you're bringing it on a plane, there is no charge for medical baggage. Keep the # with you of her Dr., all her vendors and a list of all her equipment and disposables in case of emergency. Oh...and have fun!---Kathy

 

[harleykarolynmom]

1) How old is she?
2) Is she able to transfer? If not, is she small enough to lift out of the wheelchair?
3) If out of the wheelchair, how much support does she need to sit? Does she have good head control?
4) Is she able to tolerate movement or does she need very ‘tame’ attractions?
5) What sorts of things does she like/is she interested in?
6) Are there things she doesn’t like?

she will be 10 when we sail but functions like a newborn
we can lift her but she had brittle bones and a spinal fusion so is most comfortable on her chair or laying
needs a back on chair and pillows on sides at least not very good head control
most likely tame but has some hip problems will be having surgery this month so hopefully gets better
she loves music, bright colors
not a while lot except really loud noises but i have ear plugs

 

[alizesmom]

I haven't cruised yet but have taken trached, nighttime vent dependent, wheelchair riding, g-tube kids to WDW and had fun. You change your pace a lot and get creative when care needs to be given but it is worth it all. I second the extra equipment if you have them as well as lots of power strips and batteries. Have fun! Karen

 

[SueM in MN]

You will want to avoid the attractions with warnings. They are marked with a red triangle on the map and also on a sign at the entrance to the queue.
The wording for the general warning is:
WARNING! For safety, you should be in good health and free from high blood pressure, heart, back or neck problems, motion sickness, or other conditions that could be aggravated by this adventure. Expectant mothers should not ride.

I’m adding a few notes regarding each ride that is listed with warnings on the maps.

For Epcot here are the attractions with warnings:

• Mission Space - both the more tame (green side) and the more wild (orange side). They are both turbulent with the biggest difference that the orange side spins on a centrifuge as well as moving back and forth. Sudden changes of direction that jerk you around a lot.
• Test Track - this has sudden stops, swerves and goes fast. Little neck support.

For Magic Kingdom:

• Splash Mountain - this has several small drops and one very large drop. The big drop takes you down at a very extreme angle at a high rate of speed (I think you get to 40 mph). At the bottom, your ride car stops abruptly. Most of it is fairly smooth, but during the drops, you can get jostled. It is also difficult to get in and out of because the ride car has very small openings and you would need to lift her up quite far over the side.
• Big Thunder Mountain Railroad - a roller coaster. Has no head or neck support and you get jostled a lot side to side. Sudden changes of direction that jerk you around a lot.
• Tomorrowland Indy Speedway - small, low to the ground gas powered cars. They are loud and smell of gas. Because kids are driving some of the cars, you can get bumped from behind. Even if you don’t get bumped, it can be a jerky ride. No neck support.
• Space Mountain - a roller coaster
• Goofy’s Barnstormer - this is being renovated. It is a short roller coaster.

For Disney Studio

• Star Tours - a simulated spaceship ride with sudden dips and other movements. Sudden changes of direction that jerk you around a lot.No neck support.
• Rock N Roller Coaster - a roller coaster. Fairly smooth, but very fast and does an inversion.
• Tower of Terror - you sit in an elevator and get dropped. It is fairly smooth, but arms and legs will move around. No neck support.

For Animal Kingdom:

• Kilimanjaro Safari - this is a tram ride through a simulated African wildlife preserve. It can be bumpy and my DD is bumped around quite a bit in her wheelchair. No neck support.
• Kali River Rapids - a river raft ride. The raft is free floating inside a channel and there are several places where the raft can get dropped rather hard. You may get wet or completely soaked. No neck support.
• Expedition Everest - a roller coaster which goes backwards at one point. No neck support.
• Primeval Whirl - this looks pretty tame from the ground, but it is a small roller coaster combined with unexpected and quick turning. There is little restraint and you can get whipped around a lot.
• Dinosaur - this is a very rough, noisy ride in the dark. It is a simulated time travel ride in a Jeep-like vehicle that goes up and down over simulated hills. Sudden changes of direction that jerk you around a lot. No neck support.

These attractions have no warnings, but some people have reported problems with them.
Magic Kingdom
Pirates of the Caribbean - Does have one small drop in the dark.
Haunted Mansion - At one point, the doombuggy turns around and goes down an incline backwards. Some people have reported that this short sequence caused an uncomfortable pressure on their back or neck. The doombuggy does have neck support.

Disney’s Hollywood Studios
Toy Story Mania - this is a ride car that goes thru a video game with a number of different scenes. In between each scene, the ride car makes a quick turn which some people find a bit jerky.

Epcot
Spaceship Earth - this is a very gentle, slow ride. Toward the end of the ride, the ride car turns around and goes down a steep incline backwards. Some people find that this sequence is uncomfortable because they are resting on their backs and necks (there is good neck support).

Many people think that Soarin’ has warnings, but the only warnings are for fear of heights and possible motion sickness. It is a very gentle simulated hang glider ride. The seat is supportive and feels like a comfortable lawn chair.