Here We Go Again…..Number 40

Recently we took Max for his “regular” three month Cardiology appointment. That was our first mistake; we had forgotten that with Max very, very little is “regular”. This appointment proved no different. Soon after Max’s EKG was done his cardiologist came in and said the dreaded words no parent of a chronically ill child wants to hear ….”We need to talk.” Nothing good ever comes from a discussion that starts with this phrase.

It seems Max’s heart is in “atrial flutter” which basically means the top half of his heart flutters while the bottom half beats somewhat normally, I say somewhat because the heart rate can be very high to make up for the “fluttering”. All of this is dangerous on so many levels: elevated heart rates and dysrhythmias are never good but people with atrial flutter are often at greater risk for blood clots in the heart. As if this wasn’t bad enough we knew we were in absolute trouble when we were told to “report for duty” at Phoenix Children’s Hospital the next morning at 5:30 am. They wanted us back in less than 12 hours? This must mean it’s even worse than we thought!

Long story short not long after we arrived in pre-op the next morning we were sent on our way for various reasons but most importantly it was realized that Max is super sensitive to blood thinners and the only med they could use takes at least four weeks to reach a therapeutic level. For those of you who follow the blog you may remember our love/hate (mostly hate) relationship with Coumadin last summer after Max’s valve replacement. So here we are on a new cardiac med to regulate Max’s heart rate, blood thinners, drawing nearly daily blood levels, and sporting a 24/7 heart monitor. Life is grand at the Marangella household!

It’s now four weeks later and we will be bringing Max back down to PCH on Friday morning for his 6th cardiac procedure and 40th procedure overall. While we all know I would prefer to do these things at Hopkins we realize that it might be best for Max not to travel in his present condition. We have been assured by both our cardiologist and cardiac nurse, whom we love, that the doctor performing the procedure excels at what he does. So although it is VERY hard to turn your son over to someone you don’t know we are taking a leap of faith and going with it. That’s not to say that I am not an absolute wreck, worse perhaps than I was before either of his last two open hearts but it’s the fear of the unknown, not only ours but the doctors’ as far as their knowledge of Max goes. Hopkins knows Max inside and out and more importantly they know me, these folks don’t know what they’re in for!

Pray for us and stay tuned for more news….