Levi's Heart: January 2014

Wednesday, January 15, 2014

Cardiac Catheterization Date Set

Levi is scheduled for a diagnostic cardiac catheterization on Friday, February 7, at OHSU in Portland. The day before, we'll meet with the interventional cardiologist who will be performing the procedure.

Levi at the headwaters of the Metolius River

The cath will tell us, more precisely than an echo, what the pressure gradient across the aortic valve is. We're hoping it's much less than what the echo showed last month! If that's the case, then it's possible that surgery for the subaortic obstruction can be put off for awhile longer. The results from this cath will be sent to Dr. Hanley at LPCH and then we'll know more.

Levi will be sedated during the cath, and once it's finished he'll need to stay flat and won't be allowed to bend his leg for several hours. That should be interesting! I'm hoping he's pretty groggy for a lot of that, otherwise it could be very difficult to keep him down and still. He'll also need to spend the night in the hospital.

Because of the invasive nature of this test, I'm a bit nervous. Complications are rare, but real. I'll be very glad when it's over.

Thank you for all of your thoughts and prayers!

Levi's Story

After a normal pregnancy, on June 18, 2010 our third son, Levi, was born. He was beautiful, sweet, and as far as we knew, healthy. Doctors and nurses who routinely monitored his vitals in the hospital heard a heart murmur but thought it was normal and would go away within 24 hours.

Everything changed the evening of June 19. Our regular pediatrician was on call at the hospital and after checking Levi's murmur, sent him to the NICU for an echocardiogram to see exactly what was causing the murmur. The echo showed that Levi had critical aortic stenosis, a serious congenital heart defect (CHD). Infants born with critical aortic stenosis have an aortic valve opening so small it is impossible for the heart to pump enough blood to meet the baby's needs.

Levi was quickly air lifted to OHSU in Portland, OR for an emergency balloon dilation catheterization of his valve. The procedure worked to open his valve a moderate amount, but it also caused a moderate amount of leakage of blood back into his heart. Tests also revealed that Levi has a malformed and thickened bicuspid aortic valve instead of a three leaflet aortic valve. Levi spent six days in the NICU before coming home.

On June 24, 2011, at one year old, Levi had his first open heart surgery at Lucile Packard Children's Hospital at Stanford in CA. His bicuspid aortic valve was successfully repaired and his dilated aneurysmal ascending aorta was reduced. The surgeon also did a resection of fibromuscular subaortic membrane and supravalvular aortic valve stenosis.

Much sooner than expected, on March 21, 2014, Levi went in for his second open heart surgery to resect the severe subaortic stenosis which had aggressively developed in less than a year.

We hope that these repairs will give him many more years before another surgery is needed. The next surgery will most likely be a valve replacement. He is closely monitored by a cardiologist and currently has moderate aortic stenosis.

Other than his heart defect, Levi is THRIVING. He is strong, resilient and very active. He's doing great in school and loves biking, soccer, reading, and drawing. We love our little miracle dearly. He has already taught us so much about living in such a short amount of time.

To read more about Levi's story from the beginning, start here.