How to handle, trached child?

[mattsam1]

We are thinking about taking our 3 and 2 year old girls to Disney in February during Mardi Gras. Our 3 year old has a tracheostomy and is dependent on a ventilator whenever she sleeps (napping included). When she is off the vent and awake, she functions like a normal child (aside from general trach care, suctioning, etc). We are wondering if we bring proper documentation from our pulmonologist, will we be able to get a GAC for our family to get to the front of the lines, minimizing wait time. I hate the way that sounds, like I am trying to cut the lines. If she falls asleep, we will need to be back in our car so she can be hooked up to her vent. Our concern with going to Disney is if we don't get some help getting through the lines in a quick manner, we may not be able to see many attractions. We do have a stroller that has been modified to accomodate our ventilator but, we cannot take the chance of leaving that alone to board a ride. If someone bumps it, breaks it or, God forbid, takes it, that is our daugthers life line. We will have the vent in the car and be prepared to haul it back to the car at a moments notice. Just wondering how I should approach this with the Disney staff so they will work with us. I don't want to seem like I am trying to skip the lines, that sounds so tacky.

Thanks!!

 

[SueM in MN]

If you check out the disABILITIES FAQs thread near the top of this board, there is a section about GAC (Guest Assistance Cards). That should answer all the questions you have about GACs. You don't need a letter from the doctor, but should be aware that the GAC is not meant to shorten or eliminate waits in line, and will not give front of the line access (only some kids on Make a Wish trips get front of the line access). When you explain your child's needs, a GAC will provide accomodation - including being able to bring your child's special stroller into line with you and have it treated as a wheelchair. That way, the only time you would be leaving it would be when you are actually riding an attraction.
Something that would be very helpful to you (maybe even more helpful than having a GAC, is knowing when the parks are busy and what area in that park is busy when. Most of February is not busy unless you are going around a holiday (like President's week). During 'not-busy' times, the wait times for many attractions will be very short - we were at AK and MK yesterday and most of the posted waits were 5-10 minutes. There are resources to help you with the time - including tour books and things like Tour Guide Mike (a Theme Park sponsor). Even during busy times, knowing where to go and when makes a big difference. For example, we have been to WDW many times during Spring break (a very busy time). Going to MK early in the morning usually means waits of 5-10 minutes for Fantasyland attractions because the majority of guests arrive after 10am.

For the equipment, I would suggest NOT leaving it in your car. Just getting out and then back into the park can take a long time. At MK, the parking is across the water from the park. That means a monorail or boat trip (plus waiting for the monorail or boat) both to get to your car and to come back to the park. Depending on how busy it is, you may also be standing in line at the bag check point for 5 of more minutes (they do a quick security check of all bags before you enter the park). If you have a handicapped parking permit, you can park in Handicapped parking lots which are closer to the park entrance, but that will not save a lot of time since you will stiill need to re-enter the park and go thru security again.

I'd suggest you bring it with you into the park; you can either leave it in a locker (there are lockers at the front of each park) or leave it at First Aid. There is a First Aid station in each park where they will store equipment like that for you. They have cubicles with cots for people to lie down and rest. They also have some private rooms with more 'exam type' tables that people can use for treatments, etc. The whole area is generally quiet and dimly lit.
If she can't sleep on a cot, you can either bring her stroller into one of the cubicles if she can sleep in that or each park has a Baby Care Center where she could nap after you have picked up her ventilator from First Aid.

There is a trip report from a DIS poster named eternaldisneyfan that will probably be helpful to you. Here is a link to it and you will also find a link in the disABILITIES FAQs thread. She uses a power wheelchair, but is also on a ventilator.

 

[alizesmom]

As to the vent, have you heard of Aaron Tracheostomy Board? There are members there who have done WDW with their vent who can give you a lot of info. Just google in Aarons Tracheostomy and you should find the link. Have lots of fun. Karen

 

[mechurchlady]

Sue covered almost everything that I know. One time at Disneyland I saw a little kid in a wheelchair and there were lots of people with him and big heavy medical equipment. The nurse's station will usually store medical equipment and are very nice people.

Since you will need the equpment if the kid has a nap attack then you will want it on the property as it can take half an hour or more to get to your car and back. In an emergency security could radio the nurse and have the equipment sent to you.

There are reciprocity laws that state that a person may use his handicapped plaque, tag, or license plate in any other state. The person must meet the requirements of the state he got the item from. Valet parking is free for guest with handicapped parking plaques, tags or licenses.

I have seen Disneyland make special accomodations for guests who are very special like make a wish kids. You need to talk to guest services to see what if anything special can be done.

As for not wanting to leave equipment alone you should be able to have one person stay behind to watch the stuff then switch like a baby swap. Follow the disabled guide information on lines for the ride. When you get to a CM tell them the situation and they probably will let you take turns.

You imply she does not need the vent except for naps. Does she need to use the stroller at all times? Can you take her out of the stroller and carry her or walk with her through shows and rides? If the stroller is able to hold the vent then why not take it with you then watch it in a baby swap type situation. I am sorry if I am a bother but just some things to think about and I am past my nap time.

The ADA laws prohibit Disney from asking you why you need a GAC. It would help if you brought from the doctor reasons why the kid cannot wait in line. CMs at Disney are very nice and sometimes will help disabled kids but I cannot guarantee that. In Disney parks asking does not hurt and sometimes pays off. I am certain that they will not look down on your for asking for help and for shorter wait times when the disability is so obvious. At another board full of CMs they talk about the liars who get GACs and do not deserve them but they also are more than willing to go out of their way to help the ones who truly need the GACs.

http://disneyworld.disney.go.com/wdw/common/Plain?id=PlainHomePage
That is WDW's disability page and it is printer friendly.

 

[mattsam1]

Thanks for all of the advice. We do have a handicapped tag for our car that we use. It is a lifesaver for us as we have life saving medical equipment in our vehicle. I have spoken to the Disney staff several times, I am even a former "College Program" cast member and everyone has been super helpful regarding our situation. It seems that we would qualify for a GAC and (most) cast members would let us board rides with minimal wait. Our stroller is equipped for the vent plus 10 pound marine battery that charges it. We just prefer to leave it in our car. We just don't want to take any chances with it, if it becomes damaged in any way we would be in quiet a bind for her health maintenance. Thanks for the help, we are in the beginning stages of planning our trip and I am sure more questions will arise....

We are very familiar with Aaron's trach page, it was a lifesaver for us when our daughter was first diagnoised. Her diagnoisis is very rare, about 100 cases in the world, so we just take it a day at a time.

Cheers!

 

[mechurchlady]

For me on my last WDW trip it was a long haul from the car to the front gate. Animal Kingdom is the closest probably as far as parking and at the Magic Kingdom you would have to take the ferry to the TTC then walk a couple of blocks at least or take a tram. That is why I recommend the Nurse's Station.

Good luck on your trip.

 

[Shorty82]

We just don't want to take any chances with it, if it becomes damaged in any way we would be in quiet a bind for her health maintenance.

If, God forbid, something happens with any of her equipment or there's an emergency paramedics from the Reedy Creek Fire Department are on duty in all four parks and DTD at all times and will respond very fast. They drive what are essentially large golf carts that carry pretty much any emergency equipment that may be needed and there are ambulances stationed nearby. Also, Celebration Hospital is only a few minutes down the road from WDW if you should need that.

I agree with the others who say to keep the equipment in First Aid. It'll be safe there and readily available if you need it. It can take a long time to get to your car, especially at the Magic Kingdom, while First Aid is right there in the park.

In an emergency have the closest CM call for help. There are phones everywhere and they can get the paramedics there fast. I am certain that security or somebody will run to First Aid to get your equipment if you should need it but can't get there yourself for whatever reason.

The best way to avoid long waits is to go during the off-season and to make good use of the Fastpass system. Only Make A Wish children on their Wish Trip can get front-of-line passes.

 

[dclfun]

As was mentioned above, the GAC's have changed somewhat to ONLY allow children on their MAW trip a card that allows front of the line access, and even they will wait at times. I am an adult on a ventilator and also have very little stamina so I take frequent breaks either in First Aid or back at a resort. You'll want to make use of fast passes and also if you're on property, extra magic hours. Which vent does she use? I have an LTV1000 which is fairly easy to be carried and often leave a "spare" in First Aid while the other is attached to my chair. I carry an ambu bag on my chair also in case of an emergency plus other equipment. At any rate there's no accomodation, other than if your child is on a wish trip, to skip lines or go to the front but you may want to ask for one to use your stoller as a w/c- this should allow your daughter to save her energy vs. standing in the queue lines.---Kathy

 

[SueM in MN]

We just got back tonight. It was not very busy and quite a few things had short waits of 5-10 minutes. Some of the very popular attractions, like Test Track had longer waits, but you won't be going on those thrill type rides with such small children.

The handicapped parking lots are not always real close to the park entrance. MK is the worst, since you have to walk from the handicapped parking area to the Ticket and Transportaion Center and then take either the monorail or boat to the park entrance.
The handicapped parking at MGM is close to the entrance (unless you are at the far end of the lot). If you are at the far ends of the Epcot handicapped parking, that would be a similar distance to the closer AK handicapped parking areas.

The biggest impediment to getting in quickly can be going thru the bag check though.

 

[Camster0307]

I, too, have a daughter with a trach and, while we have been to WDW every year since 1998, this will be our first trip with her tracheotomy (she got it in Dec.06 - missed our xmas trip) .

She requires a ventilator just at night right now(LTV950), but because of her neurological status, could have some respiratory distress at any time. Because of this, and as a previous poster stated, I always carry an ambu bag. The vent may not always be with us; but the ambu can do the same job for a short period of time. Have you been trained to use one? Also, our vent comes with two rechargable lithium batteries, that last four hours a piece. They're not that heavy and may be easier to be portable with. Don't know if they could be used with your vent.

I highly recommend using the first aid stations in all the parks. We've had such good experience there - everyone is so friendly and let you take as much time as you need. It's where I usually go to change my daughter also.

As far as leaving your stroller with her equipment on it while you're on a ride, I have never given it much thought. I can still lift my daughter onto rides and have regularly handed her chair over to a CM to take care of for me with her oxygen and suction hanging from the back of it. I have never worried about something taking off with it - am I being naive? I mean, I can't take it ALL with me!

 

[Shorty82]

Equipment should be safe when the chair is left with a ride CM as it will be right there with CMs around. Leaving the chair with equipment on it in stroller parking would be something else. That would be asking for trouble as those areas aren't constantly manned by CMs.

 

[mattsam1]

Thanks for all of the help and advice. The vent my daughter uses is an LTV 950. We do not have the litium battery, just the marine battery which is so darn heavy. We will be keeping an ambu bag with us that can be used in emergencies. I have spoken to different WDW cast members and I seem to get a lot of different responses to our situation....none bad, just different. We will see when we arrive. I find that if you approach them with a good, positive attitude, they are very accomodating. It has gotten us this far with her so we will continue on this path. Thanks everyone!

 

[Camster0307]

mattsam1: I wish you all the luck on your trip - your whole family will have a blast! One of reasons we bought into the DVC was because of the magical and special way our daughter was treated the first time we ever went. Overall, people were unbelievably nice and helpful!

On a side note: I know all equipment companies and insurance plans are different, but if you can, you should look into getting the lithium battery packs for your daughter's vent. Ask your respiratory company about it. I know the marine battery you're talking about - and it really can hinder your travels having to lug it around with you. A lighter, more compact battery will improve your portability!

 

[pigeonmom]

My best freinds son is partailly to totally ventilator dependent and on the LTV 950. I have been with on most of their 5 annual trips (number 6 is in 4 days this year without me ) Have NEVER had an issue leaving the ventilator on his chair and unattended in the parks when we ride on a ride or attend a show without taking the vent.

Have had to tell an airline employee who was handling the backup ventilator roughly what it was and how much it cost. The look on her face was priceless