Another Surgery?

Today Levi went in for a routine cardiology appointment.  Though I say routine, nothing is ever routine about them. This appointment has rocked our world again.  It's funny how a few numbers and images can cast a shadow on such a healthy looking three and a half year old boy.

Levi's preschool picture -- 3.5 years old

The echo today revealed what looks like a subaortic obstruction of sorts that is causing his pressure gradient to skyrocket.  Today's peak gradient was 93 and the mean gradient was 46.  In comparison, at Levi's last cardiology exam in February 2013 his peak was 48 and the mean was 28.  That's a huge increase and not a good one.  The cardiologist said that the indication for surgery for some surgeons is a mean of 35. It was hard to tell for sure from the echo, but it doesn't look like Levi's previously repaired aortic valve itself is a big contributor to this jump in pressure.  Instead a subaortic membrane appears to have regrown below the valve and is causing a narrowing in the outflow tract.  This high pressure does not only cause the heart to work much harder to pump, but this pressure coming up from below the valve also has the capacity to cause damage to Levi's aortic valve, which was skillfully salvaged during the last surgery.  That's the bad news.

A glimmer of good news is that compared to his last appointment, he has only a slight increase in left ventricular hypertrophy, or thickening of the heart muscle caused by the extra work to pump blood out of the heart.  It's still in the mild range, so that's a plus.  His heart is handling the pressure well so far.  Also worth noting is that his ascending aorta appears in the normal range, whereas prior to his 2011 surgery, it was extremely dilated and needed repair. 

Unfortunately, the solution for dealing with subaortic stenosis is open heart surgery--again.

Levi shooting hoops with a good friend

 The plan right now is to get into LPCH (Lucile Packard Children's Hospital at Stanford) for a full exam, including a 3D echo, so we can get more precise information and see what they recommend.  We already had plans to travel down to that area of CA for the week of Christmas, so we're hoping somehow they can squeeze us in.  Otherwise, we'll need to fly down at a later point.  We'll also probably seek a second opinion from another major center such as Boston.

So we're in a hold pattern for now.  I'm hoping to have information tomorrow as to when we'll have that Stanford appointment.  And then the bigger question hanging over our heads is just how long we have till Levi needs yet another surgery.  And this is what just breaks our hearts.  

It's so hard to think about having to go through all of that again.  Our sweet boy is so much bigger now and more aware of the world around him.  He was a mere 12 months old the first time around.  Now he's a preschooler, a little person with a big personality, but he still doesn't understand that something is wrong with his heart.  He doesn't know what surgery is, but he knows a lot about what to expect around him in his little safe and predictable world, and surgery is not any part of that.  This sucks.  It's hard, and raw, and crushing for James and me right now. We've felt this before and know the emotions will heighten and lessen and change as we walk this road again.  We're thankful for the two and a half surgery-free years we've just had, but we really aren't ready to do this again.  

I'll keep everyone posted as we find out more information in the days to come.