Levi's Heart: 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.

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