Heart proceedure 12 days before Disney?

[dizneechic]

Hi everyone! My son has WPW which is an electrical pathway issue of the heart for which he had a radiofrequency catheter ablation to resolve this past October. His recovery that time was typical, he was in school 4 days post procedure with restrictions on physical activity for the next 7 days (they pretty much had him stay at his desk) while he continued to heal. After the 7 days he seemed to be back to his typical self, performing normal activities fairly well (no sports or anything strenuous at the time though).

Unfortunately the RFCA we had in October ended up not resolving his issue and his WPW has since recurred (this time with SVT episodes) and he will be undergoing another RFCA Jan 29th, 12 days before we leave for Disney.

Provided his recovery goes as it did previously we know he will be walking around fairly well, and be back to his typical 8 y/o self, however we are unsure about his overall stamina throughout our trip. I think any kids would get wiped, it's a lot of walking and excitement, and yes we will be taking it slow anyhow, but I am wondering if we should be considering a GAC to allow us to have our stroller in line for him to sit if he is feeling wiped out. We'll be there Presidents week (Mardi Gras, Spring Break etc) so we're expecting to be dealing with larger crowds and lines for a majority of the trip.

Any advice?

 

[Cheshire Figment]

Hi and to disABILITIES!

1. What does his doctor say?

Several years ago I had major surgery (kidney removed) and my docotor said "for the next six months, if there is an attraction that refers to bad backs, heart conditions, or pregnancy those restrictions appy to you."

2. Think seriously of a pediatric wheelchair commensurate with his size. If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #2 deals with stamina and mobility.

Or, if you want an easier route to the FAQs, click on the link in my signature.

3. If you don't want a wheelchair, look for a "special needs stroller", also refered to in the FAQ. These are designed for larger children.

4. Related to that, check out Post #6 in the FAQ about the Guest Assistance Card. The normal response for a mobility/stamina problem is the suggestion about a wheelchair, but one thing they will do is allow a stroller to be used as a wheelchair; allowing it in lines where normally strollers would not be allowed.

But most people do 8-12 miles per day at WDW, you do not want to wear him out.

 

[momhmmx2]

Hi Dizneechic

I'm so sorry that your son's initial RFA procedure did not work out. And as you stated his recovery was typical for the procedure.

My dd had SVT and had a successful cryoablation 3 years ago.. She too bounced right back. She was a competitive gymnast at the time and competed in a meet just 12 days after surgery! So from my experience with the procedure I would not have needed a GAC, but every child is different.

So with all that being said..I would just take your cues from your son. Stop by Guest services and tell them about your son's condition and they will tailor a GAC to meet your specific needs.

Have fun at Disney and the best of luck to you and your family with the upcoming procedure.

 

[OneLittleSpark]

I think it would be best for you to rent a pediatric wheelchair for your trip. If you look in the FAQ thread, you'll find a list of wheelchair rental companies, some of which I think rent kids' chairs. This would let him save his energy for the fun stuff, rather than wearing himself out getting between things and standing whilst in lines.

Travelling around Disney with a wheelchair is really easy, so don't worry about it! Most of the lines for attractions are wheelchair accessible, though you will often be directed to the exit to board, after walking through the line. For some of the older attractions you will be directed to another exit, but there will be a CM around to direct you. As long as your party isn't bigger than 6, you'll all be able to stay together in the lines.

When you go into shows, he can either choose to transfer out of the wheelchair to a regular seat, or stay in the chair. At a few shows, there aren't many wheelchair spaces, so for these it might be easier if he transferred.

When he feels like walking for a bit, you can just park the chair in the stroller parking area, and go for a wander. Make sure you cover the seat if you do this, so it doesn't get wet if it rains.

If the wheelchair looks a bit like a stroller, you might want to get a Guest Assistance Card (GAC) with a 'stroller as wheelchair' stamp. That means that it will be treated as a wheelchair, so you can take it through lines and into buildings.

When you watch parades, there are special wheelchair viewing areas. These are marked on the map with a wheelchair symbol and the letter 'P' (or for Illuminations, it's an 'I'). These areas are looked after by CMs, so you won't have anyone come along at the last minute and stand in front of your son. These areas can fill up quite quickly, so you might want to grab a space about 1/2 hour before it starts. If your son can't be in the sun for too long, you can leave someone saving the space, while he goes inside. Just explain it to the CM before he goes, so they know what's going on.

I hope this helps, and if you have any more questions, do ask!

 

[npierce25]

I think you should ask you son what he thinks. (Sorry I’m a nursing student and mom and just had a lecture in school about the importance of autonomy in children of that age!) He is around that age that he might think he is too cool or will be embarrassed. Since he has had the procedure before and recently, he knows best how he feels. I would do the research about how to get him something if he needs it and talk to the people at the parks about it. I would first approve it with the Dr, and then talk to your son and see what he thinks. Maybe you can tell him he can try for the 1st day and see how he is doing. have him choose a ride that is more thrilling, then choose a thrill free activity to follow it (check out a show, people watch, grab a snack, watch the parade, or even just going back to the hotel pool or to nap and watch TV). Talk to him and let him know that it’s ok to tell you when he’s starting to get a little tired and that you have plans ahead of time in case he fatigues. And if it comes to the point that he needs assistance let him choose what type of device he would like. look at some pictures now, and let him choose so it is just as enjoyable for him and not something that you pay all of this $ to rent and he won’t sit in it no matter how tired he is because he thinks it’s for babies.
I wish you the best on your trip!!!

 

[dizneechic]

Thanks everyone for the feedback!

To answer a few questions, his Dr. has given him full clearance for Disney from a medical perspective after the procedure. They have pretty much always encouraged him to do what ever he can physically handle. Even currently he has no restriction yet we know he goes into SVT when he runs in gym (he faints if he pushes it too much), but he just slows it down when he starts feeling "fluttery".

I thought about renting a wheelchair but I am not sure he would actually need one or would actually use it once there. I've asked him and he loves wheelchairs (courtesy of too many trips to the hospital) so he would be all over the chance to get wheeled around, but I honestly feel once there we'll end up pushing an empty chair most of the day. The stroller we have can accommodate his size/weight (52", 55lbs) which is why I was thinking of using that and then one of the younger siblings could use if necessary as well. I had read post 6 which is what made me think of that as an alternative. I'd also hate to rent a chair and have someone who NEEDS it the whole time not have one available (although I am sure Disney has more than enough)...

momhmmx2, thanks for sharing that your dd was able to compete 12 days post op! I know he'll be raring to go by then, and our first few days before crowds come in will probably be the easiest, it's towards the end of the trip where we'll all be dragging that it might become an issue. Of course my dh says he's be more than happy to hang poolside with him.

OneLittleSpark, thanks for letting me know what to expect if we did end up going the chair route. I guess we'll know once we see how this recovery is going.

I do have a question. If we did get a GAC with the stroller as wheelchair and used our stroller initially but decide to do a chair mid way through our trip, do we need to do anything different? ie get something for the chair or update the GAC?

Thanks again everyone!

 

[blondietink]

You can get a GAC that specifies "stroller as wheelchair" so you can take your own stroller into lines, into shows, etc.. I would strongly encourage you to do this.

 

[OneLittleSpark]

I do have a question. If we did get a GAC with the stroller as wheelchair and used our stroller initially but decide to do a chair mid way through our trip, do we need to do anything different? ie get something for the chair or update the GAC?

With the GAC you will usually get a card with the appropriate stamps and / or a red tag to stick on the stroller's handle. You will only be allowed to use it as a wheelchair when he is in it, as the GAC is only valid for the person with the disability. If you got him a kid's wheelchair, that actually looks like a wheelchair (big wheels at the back, etc), you wouldn't need a GAC for him, he would just be treated as any other wheelchair user. If it looks like a stroller, you might need to get a new tag, as I'm not sure how easy it would be to transfer from one to another (just ask GS for another tag and I'm sure they'll sort you out, no problems).

I know you didn't ask this, but just to let you know - you don't need any proof of disability or dr's letter to get the GAC or to rent and use a wheelchair. I suggest you don't go for an adult wheelchair for him, as it won't be built for his body size, and will get uncomfortable after a while.

Does he get dizzy or faint if he stands for too long? A lot of lines require you to stand and walk for a long while, often in the Floridian heat, without anywhere out-of-the-way to sit down.

 

[dizneechic]

Does he get dizzy or faint if he stands for too long? A lot of lines require you to stand and walk for a long while, often in the Floridian heat, without anywhere out-of-the-way to sit down.

We don't know this. Before his 1st surgery his WPW was asymptomatic, and since the surgery he's had the issues (the pathway was injured and now active). The surgery is supposed to eliminate the WPW all together so hopefully that will be a non issue (along with the gym bit) and it would have just been recovery related exhaustion.

HOWEVER I just got a letter from Children's in the mail today and our surgery is now on the 19th!!! 10 days earlier gives us 22 days recovery prior to day 1 in which I think he will be MORE than OK so maybe this is now a non issue! I need to call them and confirm since when I was at his appt 2 days ago they told me the 29th (what I orig had documented as well) so as long as they changed and my letter is correct we may be golden!

Thank you all again! Fingers crossed here...

 

[SueM in MN]

The stroller we have can accommodate his size/weight (52", 55lbs) which is why I was thinking of using that and then one of the younger siblings could use if necessary as well. I had read post 6 which is what made me think of that as an alternative. I'd also hate to rent a chair and have someone who NEEDS it the whole time not have one available (although I am sure Disney has more than enough)...

The wheelchairs at WDW in the parks are adult sized and not really a good fit for someone under 5 feet tall.
Hopefully, the earlier date you got for the surgery is correct and he will be all recovered.
In case he isn't, I'd suggest taking along the phone numbers of some companies that rent pediatric wheelchairs or special needs strollers.

I do have a question. If we did get a GAC with the stroller as wheelchair and used our stroller initially but decide to do a chair mid way through our trip, do we need to do anything different? ie get something for the chair or update the GAC?

Thanks again everyone!

As was already mentioned, only if the wheelchair might get mistaken for a stroller - in which case, you would need to get a sticker for it.
(NOTE: There are times when they have not used stickers to designate 'stroller as a wheelchair', but just had that stamped on the GAC.)

We don't know this. Before his 1st surgery his WPW was asymptomatic, and since the surgery he's had the issues (the pathway was injured and now active). The surgery is supposed to eliminate the WPW all together so hopefully that will be a non issue (along with the gym bit) and it would have just been recovery related exhaustion.

HOWEVER I just got a letter from Children's in the mail today and our surgery is now on the 19th!!! 10 days earlier gives us 22 days recovery prior to day 1 in which I think he will be MORE than OK so maybe this is now a non issue! I need to call them and confirm since when I was at his appt 2 days ago they told me the 29th (what I orig had documented as well) so as long as they changed and my letter is correct we may be golden!

Thank you all again! Fingers crossed here...

No fingers crossed smiley, so trying the wizard one instead.