Honest opinion on a GAC card for daughter

[mattsam1]

My 4 year old has a tracheostomy which requires us to carry some simple medical equipment with us. She is ventilator dependent, during sleep hours only. So, if she is sleeping, napping, etc, she MUST be on her vent. When she is awake, she funcitons like a normal 4 year old, aside of a little trach care when necessary. I am wondering if I should get a GAC card during or stay. While she is off the vent, we need to smoosh in as many activities, rides, etc we can because as soon as she doses off, we will either need to be in our vehicle or at the hotel, plugged into the vent. I know the GAC cards do not provide front line access, and we would not expect it, I am just wondering, honest opinions, on what we should do. Her condition is rare, about 100 cases in the world, so I know it is not something cast members will be familar with.

 

[SueM in MN]

My 4 year old has a tracheostomy which requires us to carry some simple medical equipment with us. She is ventilator dependent, during sleep hours only. So, if she is sleeping, napping, etc, she MUST be on her vent. When she is awake, she funcitons like a normal 4 year old, aside of a little trach care when necessary. I am wondering if I should get a GAC card during or stay. While she is off the vent, we need to smoosh in as many activities, rides, etc we can because as soon as she doses off, we will either need to be in our vehicle or at the hotel, plugged into the vent. I know the GAC cards do not provide front line access, and we would not expect it, I am just wondering, honest opinions, on what we should do. Her condition is rare, about 100 cases in the world, so I know it is not something cast members will be familar with.

What her condition is doesn't matter, so it doesn't matter whether or not the CMs are familiar with the condition.
What does matter is what her needs are and making the needs apparent/understandable to the CMs in Guest Relations when you request a GAC.
If you have not checked yet, there is information about GAC (Guest Assistance Cards) in the disABILITIES FAQs thread near the top of this board that may help you to figure out what her needs might be.
For the nap situation, keep in mind that it will take you a while to get from the park back to your resort. I'm assuming you are planning to keep the vent in the car (since you mention you would need to be either in the vehicle or back at your resort). An option you may not have thought of is storing your vent at First Aid in the park. Each park has a First Aid Center with cots and cubicles with privacy curtains where people can go to rest, etc.
Each park also has a Baby Care Center (usually next to First Aid) where they have facilities for things like changing diapers, feeding. I think they also have facilities for naps, but someone who has used them recently could give a better idea. If that would be a better place for napping, you could store the vent at First Aid and go to Baby Care for napping.
That would probably be easier than making a mad dash to the car or resort.

 

[mattsam1]

Thanks for the info. We will be keeping the vent in our van at all times, we have a handicapped parking pass and we know her limits. When she tells us she is tired, we will haul it back to the van. There is no way we will store it at first aide, even in a locked facitily. We had a problem over the summer with some accidentially damaged equipment while we were on vacation and trying to get replacement parts and pieces are just too stressful while on vacation.

 

[SueM in MN]

Thanks for the info. We will be keeping the vent in our van at all times, we have a handicapped parking pass and we know her limits. When she tells us she is tired, we will haul it back to the van. There is no way we will store it at first aide, even in a locked facitily. We had a problem over the summer with some accidentially damaged equipment while we were on vacation and trying to get replacement parts and pieces are just too stressful while on vacation.

I can understand that, especially if you have had damage before.

For Epcot, the Studio and AK, the handicapped parking is a fairly short walk from the park. The parks are pretty big though, so walking from the 'back' of the park to the entrance may take a bit. Probably not more than 10-15 minutes if you know your way and hurry.
For MK, the parking (even the handicapped parking) requires a boat or monorail ride to get to/from the parking area to the park. You might have to wait 15 minutes for a boat or monorail if you just missed one.

It might be helpful for you to get a GAC that would allow a stroller to be used as a wheelchair. That way, you would be able to bring it into lines with you and she would not get so tired just from walking. You would have the option of parking it with the other strollers and walking in lines or using it on all lines.

 

[livndisney]

Sue gave some great tips (as always ). I would like to add, from what I have seen there is not really places to nap at the Baby Care Centers. The one at the MK is on the small side. They have a small room with TV and toys, a nursing room, bathroom and diaper changing area. There is also a small area to buy limited baby supplies.

The one at AK has the largest "play" room.

Cindee

Sue, I know questions about the Baby Care centers come up every so often. Would it help if I went over and took pictures of the centers to add to a post? To maybe use as a reference?

 

[OneLittleSpark]

Is there any way you could get, rent or borrow a smaller vent that could be fitted to a stroller? If you could, this would allow her to take at least short naps in the stroller. I'm afraid I don't know much about the subject, but I think I have heard other's here talking about such things. Just a suggestion.

 

[SueM in MN]

Sue gave some great tips (as always ). I would like to add, from what I have seen there is not really places to nap at the Baby Care Centers. The one at the MK is on the small side. They have a small room with TV and toys, a nursing room, bathroom and diaper changing area. There is also a small area to buy limited baby supplies.

The one at AK has the largest "play" room.

Cindee

Sue, I know questions about the Baby Care centers come up every so often. Would it help if I went over and took pictures of the centers to add to a post? To maybe use as a reference?

if anyone has some pictures, I'm willing to make a little sheet of them to post.
I don't have any pics and won't be going until April.

 

[dclfun]

Which vent does she use? I have an LTV1000 that is quite portable and I always bring a spare. It can be quite a distance from inside the MK to the parking lot. If you were comfortable with her napping in a stroller then that might at least give you less stress and also some more time. This way using the stroller as a w/c would also allow you to be bringing the vent with you at all times.---Kathy

 

[mattsam1]

She is on the LTV 950. It is portable however, when you add the 12 LB marine battery, its portablity decreases quite a bit. We also have to carry a portable suction machine with us, plus trach supplies. The stroller gets too heavy and overcrowded. Plus, we cannot leave the vent unattended at all. It is her lifeline and cannot take the chance of it being taken or broken. We had someone run into our vent (unintentionally, of course) and do some damage to it while we were on vacation last summer. Trying to track down replacement parts while on vacation was just too stressful and we vowed NEVER AGAIN. We opt to leave it in our vehicle at all times because we know it is safe there and available to us when we need it. My daughter, even at 4, knows her limits and when she is getting tired, knows to tell us it is vent time.

 

[mattsam1]

Oh, and I just have to say a SPARE LTV!!! WOW! We had to fight tooth and nail to get one LTV. She came home on an LP 10. Talk about huge!! It took us 8 months to convince our insurance to buy us the LTV. I would love to have a spare, what a treat!!

 

[dclfun]

I used to have the LP10 as well and know what you mean! I think they are being phased out for anyone who is not bedbound. For the LTV there are lithium battery packs that give 4-6 hours of use that are about 6X8 inches only and attach to the LTV10. I'd try to get one as it's much easier to tote than the marine battery and easy to see if it's fully charged, etc. I have two of them plus the marine battery which stays attached to my chair so if everything's fully charged I have at least 24 hours on some kind of battery. Apparently where I live (Florida) it's some kind of law that there must be a spare unless you live w/in a certain radius of your vendor. One could argue that a vendor isn't open 24/7 and to avoid an emergency trip to the hospital it's easier and cheaper for the insurance company to provide a spare. I also have an ambu bag for dire emergencies and haven't really had to use the spare but I like knowing it's available. ---Kathy

 

[Camster0307]

My daughter is on a LTV950 and, as Kathy described them in her post, we travel with 3 lithium batteries. Each battery gives us 6hrs - so we're covered for up to 18 hours. My daughter usually only requires her vent at night; but when she's sick, she needs it 24/7.

That being said, we just returned from a trip to WDW at the end of Nov. and wouldn't you know it, my daughter was recovering from an illness and was on the vent. I lugged around the vent, 3 batteries, O2, suction, and emergency bag. Yes, it was a lot and couldn't all hang off the back of her wheelchair - I usually carried the suction on my shoulder. Wasn't comfortable but you gotta do what you gotta do! I understand your hesitation for leaving the vent with anybody else - truly I do. But I'm must admit I found myself wincing at the idea of your family having to make a mad dash for your car if your daughter falls asleep. As others have mentioned, it could be quite a distance and you could hit many a delay (forget trying to get to the MK entrance during a parade!) Do you carry an ambu? If so, I guess that could work for you in a pinch.

I don't want to talk you into doing something you're not comfortable - only you know what's best for your daughter and family. We're here to help give advice and relay our own experiences so you can make your own decision. I have left equipment behind on my daugher's chair while I took her on a ride and have never had a problem. Sometime a family member would watch it, but not always. I have used the First aid stations extensively and have always felt very comfortable with the facilities.

Good luck with your plans and keep us posted!
(BTW- we, too, have a back-up vent. It's not a law in Mass.; our vendor got it for us because I think they don't want to be bothered in the middle of the night if something goes wrong with the first one!)

 

[lawdog037]

We took our then-18 mth old son to WDW last May. He has a trach and was also vent dependent at that time. We use a double stroller and carried with us in the parks his LTV 950, suction machine, go bag, diaper bag, marine battery, lithium battery, and a small o2 tank in case of emergency. We used a GAC which allowed us to "treat his stroller as a wheelchair" and hence were able to bring it in virtually all the rides. We also left him in it on the buses and they tied it down. We had a backup vent at the hotel. Although the stroller got very heavy to push, we managed okay.

I had a local respiratory company deliver to the room the o2, and I preshipped to myself at the hotel his supplies for the week -- they were waiting at the front desk when I arrived. Call the hotel for the specifics. Our marine battery died while there, so we had to have the local company bring us a new one. We then had to travel home with 2 marine batteries, and my local company returned the Fla. one once we got home.

Sometimes when we arrived at the parks, people w/ rental strollers would be leaving, so we asked for their stroller, and we used this second stroller to split up some of our stuff so it wouldn't be so hard to push our stroller. We went in May, and I thought even though the weather was lovely it was a little hard for my son to breath.

 

[DevilDuckie]

It cannot hurt to get the card. Even if you never need to use it it will be a resource just in case. Better to have one you never need to use than not to have one and suddenly need it.

 

[Schmeck]

We took our then-18 mth old son to WDW last May. He has a trach and was also vent dependent at that time. We use a double stroller and carried with us in the parks his LTV 950, suction machine, go bag, diaper bag, marine battery, lithium battery, and a small o2 tank in case of emergency. We used a GAC which allowed us to "treat his stroller as a wheelchair" and hence were able to bring it in virtually all the rides. We also left him in it on the buses and they tied it down. We had a backup vent at the hotel. Although the stroller got very heavy to push, we managed okay.

I had a local respiratory company deliver to the room the o2, and I preshipped to myself at the hotel his supplies for the week -- they were waiting at the front desk when I arrived. Call the hotel for the specifics. Our marine battery died while there, so we had to have the local company bring us a new one. We then had to travel home with 2 marine batteries, and my local company returned the Fla. one once we got home.

Sometimes when we arrived at the parks, people w/ rental strollers would be leaving, so we asked for their stroller, and we used this second stroller to split up some of our stuff so it wouldn't be so hard to push our stroller. We went in May, and I thought even though the weather was lovely it was a little hard for my son to breath.

I've read posts here on DISabilities with info that leaving a child in a stroller on a bus is very, very dangerous, as the stroller is not designed as a safe restraint. If a bus driver let you leave your child in the stroller, he/she made a bad mistake, one that could have killed your child if the bus was in an accident.

 

[mechurchlady]

It is a federal law that prohibits kids in strollers from being allowed to ride on the trams, streetcars, jitneys, busses and other wheeled transportation. That is why all kids must be removed from strollers. I do not know which law but have had CMs verify this at both parks.

I do not know if a disabled child in a stroller would be an exemption if that stroller was used as a wheelchair but think it would be allowed. As for safety, yes, it is more dangerous to have a kid in stroller than sitting on a bench seat on a bus. The strollers have a higher center of gravity and can tip over in an emergency.

 

[bbyee]

I agree with the person who said that it still might be a good idea to have the vent on your person instead of in the car ... I'm not familiar with how vents work and all that, but I have a rare skin disorder (under 350K worldwide), so I know about adapting....Here's a thought....

What about getting a cooler with wheels (like you would take on a picnic) where you or your husband could pull the cooler which holds the vent and other necessary equipment? Perhaps you could then be able to put the cooler with the wheelchair (with your name clearly marked on the cooler, etc) and then you don't have to worry about the mad dash.

I have absolutely no doubt that your daughter knows her limits under normal circumstances (and perhaps even not-so-normal circumstances), but she might not be as aware of her body with all the stimulation of Disney.

 

[Cheshire Figment]

What about getting a cooler with wheels (like you would take on a picnic) where you or your husband could pull the cooler which holds the vent and other necessary equipment?

You are not permitted to have anything in the park that is pulled behind you. This includes wheeled coolers and wagons.

We have problems in the parks with people with rolling backpacks, they have it on their back when going through Security and then start pulling them when in the park. This can lead to problems.

 

[bbyee]

You are not permitted to have anything in the park that is pulled behind you. This includes wheeled coolers and wagons.

Fair enough...what about some a large backpack that is well padded to accommodate the travel vent?

 

[SueM in MN]

It is a federal law that prohibits kids in strollers from being allowed to ride on the trams, streetcars, jitneys, busses and other wheeled transportation. That is why all kids must be removed from strollers. I do not know which law but have had CMs verify this at both parks.

I do not know if a disabled child in a stroller would be an exemption if that stroller was used as a wheelchair but think it would be allowed. As for safety, yes, it is more dangerous to have a kid in stroller than sitting on a bench seat on a bus. The strollers have a higher center of gravity and can tip over in an emergency.

The information in the disABILITIES FAQs thread about buses was provided by some of the WDW bus drivers.
The driver will allow strollers being used as mobility devices to be strapped down, but it is not really that safe unless the stroller was designed to be a transport device.

What about getting a cooler with wheels (like you would take on a picnic) where you or your husband could pull the cooler which holds the vent and other necessary equipment? Perhaps you could then be able to put the cooler with the wheelchair (with your name clearly marked on the cooler, etc) and then you don't have to worry about the mad dash.

Disney's rules don't allow you to bring in things that can be pulled behind, like wheeled coolers, wagons or suitcases.
I don't know if they would allow it for a situation like this, but in general, it's not allowed for safety reasons.