The problem with having a kid with a medical condition is the complete "new parent" lack of knowledge that comes with it. I've gotten to the point in my almost nine years (!!!) of being a parent that I'm some what comfortable with parenting emergencies/illnesses, etc. But with Little Guy, I never really know so I end up calling his cardiologist and explaining what's going on so they can just tell me it's nothing. This happened when Little Guy was starting to crawl and would crawl around all day like a mad man getting red in the face and sweaty. Was this good for his heart? I took him in and his doctor told me it was totally normal and if he was tired he'd stop and rest. Two summers ago at my parents' cabin and a very high altitude in southern Utah he was having a hard time breathing so we took him to the ER and he had some breathing treatments. With him, because of his heart, I take everything a lot more seriously than I think I do with my older kids.
The other night he went and got his blankey and complained to us that he got hurt, and the injured location was under his left armpit. It didn't appear that there was an outside reason for this to hurt. He told us maybe he was hungry and then laid down while eating a roll. After a few seconds he was off running again, but with his arms folded tightly, sort of like he was hugging his chest because it hurt. And he was still telling us he hurt. So I called his cardiologist and spoke to one of her associates who basically said if I was really worried, take him to the ER (doctor speak for: they don't want the liability) but based on his last appointment (just over a month ago) he couldn't be having any problems this soon. By the time I got off the phone, Little Guy was running around like normal claiming he didn't hurt anymore. But anytime he comes to us sick or hurt especially if it's anywhere near his heart, we panic.
Usually his heart condition isn't a part of my everyday life. He's a normal kid right now. And healthy. But every once in awhile it creeps in and I'm left panicking like a new mom with an infant who has a cold for the first time. It's not a feeling I like.