Heart Things ....

My son has a congenital heart condition.  Its one of those medical issues that has sort of plagued my sub conscience for as long as we've known about it.  We live in 6-9 month increments.  Its that worry that sits on the shoulder but sits quietly until such time the next appointment arrives - about 3 or so weeks before the next appointment arrives and then the insane worry kicks in.  Do we walk out of the doctor's office with good news or not so good news.  So far we've been pretty lucky.

My son has a heart condition called pulmonary valvular stenosis (PVS).  PVS is a heart valve disorder that involves the pulmonary valve.  The valve separates the right ventricle and the pulmonary artery.  The stenosis occurs when the valve cannot open wide enough, therefore, less blood flows into the lungs.  One of the "warning signs" things are progressing in the "not so good direction" is shortness of breath.  My son likes to be a little goofy and dramatic at times.  Today I noticed that he seemed a bit out of breath after running and jumping.  The same thing happened after playing outside for awhile and he was climbing up a slide ladder a week or so ago.  By the grace of God my child has finally begun to sleep through the night, then I wonder is he sleeping because he's so tired because his heart is working too hard.  So now I'm wondering if his heart issue is getting worse.

With my son you just never know.  I cannot let my guard down for a moment because you just never know what will surface next with his health.

When my son was in the hospital recovering from an endoscopy procedure complication, he and I were visited by the cardiologist on call.  He was a nice doctor and must have spent about 45 minutes talking to me on a Sunday afternoon.  He specializes in children with genetic disorders and was very familiar with Noonan Syndrome and PVS.  Its really rare to come in contact with a medical professional that knows a lot about Noonan Syndrome so it was actually an "intellectual treat" to talk to this doctor.  He had such a different take on things than our son's cardiologist - whom we like and respect dearly!  He explained to me that PVS is such a different "heart problem" with people who have Noonans than with those that don't have Noonans.  It doesn't present itself the same way or the statistical data isn't the same.  We were told by my son's cardiologist that if we can get to the age of 3 without him needing surgery or a balloon angioplasty that he'd likely only have a 10% risk of needing the procedure and / or surgery in the future.  So as we approach the age of 3 (in July), we were sort of feeling lucky that he's kept the "medical intervention" at bay for his heart.  Then this other cardiologist said, that's not true with people who have Noonans.  I sort of felt a bit deflated, yet glad someone pointed this out.  This way if my child makes it to 3 without needing any medical intervention, I now know it isn't wise to put the guard down - and we won't be blind-sided, should he need intervention post the age of 3.

So, today I'm not so sure what to do.  Do I call the cardiologist and tell her that I noticed my child has been out of breath when running and climbing and is sleeping more than he usually has done?  Do I wait for his appointment in June?  I sometimes don't know how doctors and nurses do it.  When do you know when the right time is to "treat" a person for their medical issue?  I feel like I'm at a fork in the road and I'm not sure which way to go.  I don't want to be that "crazy over worried high anxiety Mom from Hell", but then I also don't want to miss a warning sign and then my son has bigger medical issues because I was negligent.  I'm a worrier by nature.  I got the gene from someone in my lineage and I'm afraid I got it all!

No one tells you being a parent is going to be easy - but I never would have dreamt that I would be facing such challenges as a parent.  Being responsible for another human being changes how you think about things.  Since my child is very much a minor, I have to make decisions for him.  Its often hard to do that, because if I had to make the decision for myself - I wouldn't want to do half the things my son has had to do.  Which is why I haven't run to the phone to call the cardiologist today.  I just want one more day to think about things and to make sure that he's not just "pretending" to have shortness of breath when he runs.  And I'm hoping that because my son is so active that its normal that he has shortness of breath.  I know this wouldn't be anything anyone else would worry about if their child didn't have PVS,  but my kid does and I have to worry about this and its frustrating!