Tips for a Disney trip post Open Heart Surgery/Congenital Heart Defect

[PixieDust82]

Hello everyone. This is my first post here, I'm still trying to figure out how this works My 4 year old son had Open Heart Surgery on Monday, May 21st. He had his surgery at Children's Hospital of Philadelphia and we returned home (Fl) on Sunday. My son was diagnosed with an Atrial Septal Defect(ASD) this April after his pediatrician heard a heart murmur and sent us to a Cardiologist. He has had it since he was born(CHD), but since he's never had any problems and the doctor never heard a murmur before, it was never diagnosed. Unfortunately, the hole was too large to close on it's own or via cardiac catheterization, so we had no option but to go with an Open Heart Surgery. He has been recovering very, very well. We have a WDW vacation booked for this July, exactly 2 months post op. We were told he would not be able to get into any pools until 6 weeks post op, so I'm guessing 2 months is enough time. I will ask his Cardiologist to be sure it will all be fine during his next appt. on July 11th.
Anyways, is there anyone out there with any experience with Disney and a Congenital Heart Defect and/or Open Heart Surgery? What kind of things should we avoid or do or take to be sure he's comfortable, safe, and OK during out trip?
We will be staying at Disney's Fort Wildreness Campground for 1 week along with my sister and parents. My oldest (7) has been to Disney 3 times (age 1, 2, and 4), my middle son (5) has been to WDW 2 times before (When he was around 5 months old and at age 2), and my youngest, who had the surgery (4), has been there once at age 1. The only one that remembers is my 7 year old, but for the younger ones, this will be the first time they will actually be able to fully enjoy the trip and know what's going on, I'm excited Any advice would be greatly appreciated

 

[dclfun]

First of all, I'm so glad your son is doing well after his surgery! My grandson also had a congenital heart defect and surgery to repair the hole. His parents ( my dd and son in law) were told that after the surgery he would be "just as good as new" and that there were no restrictions on activity. He had the surgery at 10 months. Of course, that is only my grandson- your son may have restrictions or concerns that would be best addressed by his cardiologist. My only suggestion is that it gets very, very hot and humid in Florida in July and the heat may affect his stamina. Some people use cooling vests or even the cooling bandanas, and he may need to use a wheelchair or stroller if his energy is low. Energy is harder to maintain in the heat also and many four year olds still need a stroller due to all the walking involved. Being at Ft Wilderness will be nice as it's such a relaxing place and you can always get away from the park hustle/bustle there.

 

[PixieDust82]

Thanks DCLfun. It's great to hear your grandson surgery was successful. How is he doing now? We will be sure to take his stroller on our trip. Thank you

 

[dclfun]

Thanks DCLfun. It's great to hear your grandson surgery was successful. How is he doing now? We will be sure to take his stroller on our trip. Thank you

He's almost three now and you'd never know he had the surgery other than seeing his vertical scar. He's an active little boy and has no restrictions at all. We used his stroller during our early March trip just because of the amount of walking for a little guy. As you will be closer to your son's surgery date, he may not be fully active yet, but kids bounce back so quickly that you'll probably be the one to have to slow him down!

 

[chloelovesdisney]

I'm happy to hear your son is doing so well following his surgery. I would just be careful in the Florida heat and not overdo it so soon following his surgery. Make sure he stays hydrated. If you will not have a/c at the campground I would consider switching to a hotel or one of the cabins at the fort.

 

[MSSANDRA]

Not a lot of personal advice but thought I would share that my DS had a play date today with his best friend that had the surgery as an infant. That child was WIDE open, wild all day. Just as healthy, happy and delightful as any little boy could be. He will face one more surgery...late teens, but he is living a full and normal life!

HEAT will be your biggest concern. I would rent a larger, comfortable stroller if you do not have anything that he will still fit into. I assume RV camping....would not do tent with him.

 

[SueM in MN]

Besides the advice from the other posters, a 4 yr old may be tall enough to ride some of the 'thrill rides'. If his older siblings are riding he might want or expect to ride too, so you want to be prepared for that.
There is a list of attractions with warnings in post 23 on page 2 of the disABILITIES FAQs thread. That thread is near the top of this board or you can follow the link in my signature. You can use the list of warnings to talk to his doctors to get an idea of which he should avoid and which might be OK.

 

[shinysparklybubbles]

Just wanted to say I had the same surgery 25 years ago At CHOP!

 

[Grumpy6264]

Our 13yo dd was born with Hypoplastic Left Heart Syndrome and had three open heart surgeries by the time she was 2 1/2 years old.

We have asked her cardiologist many times about things that we should avoid. We asked about roller coasters, other thrill rides and can she fly or not. His response was that for the most part, she will self-regulate herself, as far as activities go. He advised against rides that work like a centrifuge (ie. Mission Space - Orange) This could cause issue with blood flow through her heart and lungs. But other than that, no restrictions.

Now I will say this, the heat can be brutal on her. The heat in Florida is hard for most of us, but she cannot regulate her temperature quite as efficiently as the rest of us. That said, make sure that he drinks as much water as he possibly can. Also, if you can go in the morning and evening, using the afternoon for pool time and other activities.

Plan your day so that you can get out of the heat and humidity as often as possible.

And finally, listen to you son, he will be best able to tell you what is happening. If he starts to get cranky or acting not like himself, I would suggest possibly taking a break for a while.

 

[DizNee Luver]

I can't give you any advice pertaining to your trip, but I can totally relate to what you've just been through! Our (then) 4 yr old daughter, had her ASD repaired on March 7 through Open Heart Surgery. They thought the hole was the size of a dime, but when they got in there....they discovered it was the size of a nickel and there were 2 more small holes. They were able to patch all of them.

We were given clearance for her at the 6wk appt.....and we didn't experience any issues post-op. So I would guess, your son will be ok for your trip.

Have you seen a difference since the surgery? We knew about the ASD since birth but didn't think it affected her.....but what a difference in energy since the surgery!!! It's amazing!!!

I hope you have a *+*+*Magical*+*+* trip!!!

 

[akclayton]

Glad he's doing well. Our daughter was born last January with Tetralogy of Fallot and had her surgery in August. She's doing great now.

I think the main concern of the water is for the healing of the scar. Did he get stitches or does he have the glue bondage on? I think you should be okay for your trip but your cardiologist will be the best on that. I think with an ASD, that he shouldn't need any exclusions from rides unless the restraints or situation would put strain on his chest. Other than that, I think he should be perfectly fine. Keep him hydrated and maybe take advantage of the baby care centers to help him be able to sit down and rest in a cool space.

Hope you have a great trip.