Anyone Have Experience with Surgery for Atrial Septal Defect/open Heart Surgery?

My daughter has had 5 heart surgeries. First thing you should know is that every child and every surgery & recovery is different. If everything goes smoothly during the surgery then I would expect your son to be in the PICU for only a few days. After that he should go to the "floor" and you could be home within a week or so. We have always been told at discharge: "activity as tolerated". haha! You never know what silly things these kids are going to try! My daughter was no exception to being determined to do whatever she wanted to NO MATTER WHAT! I would follow her around and try to do things for her and trying to prevent her from climbing onto things, etc.

If you son has a tricycle or bike, you may want to hide it until he is cleared for that type of activity. I always keep a lot of crafts on hand since my daughter is not able to do a lot of activity at this stage in her life.

Where is your son going to have surgery? I live in Tucson and I know the doctors well here. If you are going to Phoenix, I know a couple of moms of CHD kids up there that I can put you in touch with. I am also on several heart support groups if you are interested.

Let me know if there is anything I can help you with. I've been a mom of a child with CHD for almost 20 years! ;-)

~N.

My daughter had openheart surgery when she was 3, now she is 31. I'm sure alot of things have changed over time. The best thing I can tell you about after is that it is self limiting. They can pretty much do what they want and when they get tired they rest. I was told to not let her do things that she could get hurt doing, like climing, skateboarding, 2 wheeled bicycles,and the like, but she would go out and ride her trike for a while and then come in and rest. Our biggest problem was that she was totally potty trained before surgery and then relapsed. It took another year and a half with medication to get her regulated again. But that is not a normal long term problem.
I hope you can fly through your surgery as well as we did. By the time of her 6 week check she was pretty much back to normal and junping off of furniture in the waiting room. I will keep you in my prayers

C.

My nephew has had 3 or 4 surgeries to replace a valve in his heart and is now 14, almost 15. He has lots of expereince at Phoenix Children's Hospital and even had a website of his experience. My sister-in-law said you can email her at ____@____.com and my nephew's website is www.caringbridge.org/visitsean_s if it's still there and you can go to www.caringbridge.org and set up your own account. Hope this helps!
A.

My husband has worked as an assistant in open heart and vascular surgery for over 15 years. I told him about your situation. He said that while open heart surgery for anyone is huge deal, ASD repair is a very routine surgery. While not knowing the specifics of your son's situation, he said usually once the hole is repaired (either by stitching it closed or sewing a patch in to close it) the patients will have a normal life. I would think that as he heals, he will feel better and want to increase his activity levels accordingly. Hope this helps.