Update from LPCH Visit / Next Up: Cardiac Cath

We're back at home after our week long road trip to CA. We spent a very, very special few days with family in Carmel that were rejuvenating and so good for each of us. We also spent one day in Palo Alto at LPCH at Stanford.  We left Carmel at 5:45 am and came back at 5:00 pm.  It was a very long day.

After meeting with the surgeon, an urgent care visit for croup, an echo, a meeting with a cardiologist, and then another conversation with the surgeon that night, we have a bit more information about the state of Levi's heart.  But we also don't have the answer to when Levi will need surgery.

Arriving at LPCH

Levi held still for over an hour while two echo technicians recorded a number of images, both 2-D and 3-D, and took measurements of Levi's heart. Though this testing went super well, the surgeon felt that there was still some ambiguity with exactly what is going on with the pressure gradients in Levi's heart.

The images did show two subaortic fibromuscular ridges that are causing a rise in the pressure gradient of the blood as it exits the heart through the aortic valve and into the aorta.  There's a question as to whether or not there is also a subaortic membrane just below the aortic valve as well, or if it's scar tissue from the previous valve repair. The pressure gradients shown by this echo were still high.  The peak was in the 80s. We learned that something this high could be reason to operate, but that it's important to also take a look at the impact it's having on the heart, to make sure that all the data lines up.  

Levi loved this train set at the hospital

At this point, Levi's heart is still functioning quite well.  His left ventricle is squeezing well, there is little thickening of the heart muscle (hypertrophy), there is no mitral valve leakage, and the leakage from the aortic valve is still minimal.  The surgeon thinks there's a chance that the pressure gradient may not be as high as the echoes shows, since the heart does not appear to be that damaged.  The only way to get a completely accurate reading of the pressure gradient, is to go into the heart and take the readings.

Lots of waiting

So, the surgeon wants Levi to get a cardiac catheterization to measure the pressure.  This is done by inserting a thin tube in through the femoral artery (groin area) and up to the heart.  Levi will be under anesthesia and for a child Levi's age, it would most likely involve an overnight stay in the hospital.  So we'll be scheduling the cath in the near future and will travel back down to LPCH for this procedure. I wish it all could have been done while we were down on this trip, but with Christmas week, it wasn't possible to get on the schedule.

The good news is it's not an emergency.  But we'll want to get Levi in for the cath in the next couple months.  Then we'll have a better idea about when surgery is needed.

Just after finishing the echo.  Levi was a rock star through it all.

We also talked with the surgeon about how the best case scenario would be an open heart surgery (OHS) where only the subaortic obstructions would be removed.  However, there's also a chance that Levi would need a valve replacement as well, which is an even bigger deal.

So, while I had hoped to come away from this day at LPCH with answers, we're left in "wait and wonder" mode again.  Though a cath is more invasive than an echo, it's much better than OHS.  If the cath gives us "good" lower pressure gradients, then it's possible we could wait on surgery for now and get Levi even bigger and older.

Next step, get the cath scheduled and see what's really going on in the heart.

----------

A few pics from the rest of our visit...

All the boys LOVED hanging out at the beach.  What a treat!

Appointments on Monday

Levi singing in his preschool performance

We are all set for Monday's appointments down at LPCH.  We'll start the drive down to CA early tomorrow morning and should arrive in Carmel by tomorrow night, which is where we'll be spending Christmas with family.  

We'll drive back up to Palo Alto early on Monday morning, Dec. 23.  We meet with Dr. Hanley, Levi's surgeon, at 8:30 am to get his take on what needs to be done and when.  

Then at 11:30 am, Levi is scheduled for an echo, followed by an exam by pediatric cardiologist, Dr. Stafford Grady.  

We're very thankful that Levi is able to be seen at LPCH so soon and by such a great team of doctors.  Ideally we'd be able to meet with the surgeon after Monday's echo instead of before, but he'll at least get to take a look at the previous echo done here in Bend.  Then we have a phone consult set up for January 2, after he reviews the new echo.

The roads up here in OR look pretty clear and everyone is relatively healthy so I think we're good to go!  We're eager to get more information on Levi's heart and hopefully leave LPCH with some sort of a timeline for when surgery is needed.  It's still hard, but knowing what to expect next is certainly helpful.  

A snowy weekend up at Elk Lake

Stanford Appointment Set

I received a call from our local cardiologist's office this morning with good news about the next appointment.  Stanford is working on getting Levi in on Monday, December 23!  This is great timing as we'll already be down there for Christmas.

Levi's cardiologist here in town reached out to Levi's surgeon, Dr. Hanley, this morning and he was able to make this appointment happen.  So on the 23rd, Levi will go in for testing (I'm assuming an echo, EKG, etc.) and then we'll meet with a cardiologist--I'm not sure who just yet--and see what he or she says.  Then Dr. Hanley will get the results and we'll have a phone conference with him, most likely on January 2, to discuss the possible surgery.  The last time Levi went in for surgery, we conferenced by phone with Dr. Hanley twice.  He took his time talking to us and answering all of our questions. We never once felt rushed. We just really think he's great and feel like Levi is in the best of hands.  

So it will still be a little while longer before we have more details and a timeline for what Levi's little heart needs, but at least the next couple of steps are in place.

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.