Cardiology

On Friday, we went for Parker's follow-up cardiology visit.  We REALLY love our cardiologist (aside from wishing we didn't need to see him).  He is friendly, genuine, and is so good with Parker...and with us.  He knows how to word things in a matter-of-fact way that isn't completely terrifying.  There is something about seeing doctors that are intentional about seeing pediatric patients.  They are SO much better with kids!

Parker's ASD (atrial septal defect) is moderate.  It is a 6mm hole between his atrial chambers (top of the heart), which is pretty large considering the size of a heart.  A severe defect would be somewhere around 10mm.  His hole is not any smaller from the last visit in January, which we were told is fairly common.  The hope is that his hole decreases in size significantly over the next few years.  

Essentially, our cardiologist will continue to monitor Parker's ASD, his growth, and his overall health (with particular attention paid during winter months) as well has its size in order to determine the need for an intervention --which, if Parker has a bad winter in terms of illness next year, could be sooner....or we have a 50/50 shot of it never being needed.

None of the things above are news to us.  Dr. Carr was very explicit with us at our January visit.  The part that was new information hit me like a punch, though.  Dr. Carr informed us that when a catheter fix of a heart is being done, a device attaches to the walls of the heart to seal the hole.  In Parker's case, his hole is not centered on the wall, making a device insertion unstable and vulnerable.  This means that if Parker does need an intervention (again, 50/50), then it would definitely be surgical.

While he didn't tell us that our odds were any worse, I have admittedly been using the "maybe it will just be a cath procedure" thought to make myself feel better.  I know a large percentage of children with DS go through this, but the thought of someone breaking through your baby's rib cage to do surgery on his heart is pretty panic-inducing.

An interesting tid-bit that our cardiologist shared with us is his philosophy on WHEN the surgery takes place.  We know that unless there are other factors in play, the surgery would happen some time between the ages of 3 and 5 years old.  The thought is that, since the procedures are about the same medically, that getting it over with at a younger age would allow for a child to recover more easily emotionally.  A 5 year old is fully capable of remembering the details, fear, and pain of the procedure...whereas a 3 year old is less likely.

Regardless...this whole post is one that I'd love to just avoid avoid avoid until I am forced with a reality one way or another.