Levi's Heart: Post-Op Day 4 & Discharge Tomorrow?

Tuesday, June 28, 2011

Post-Op Day 4 & Discharge Tomorrow?

Today was a very busy day and there's talk of being discharged tomorrow morning. First thing tomorrow, Levi will have another chest x-ray and we'll find out the results of the echo he had today. Assuming everything looks good, we'll be discharged and able to fly home as early as Thursday. Wow, that was fast!

Accomplishments today:
- had an EKG
- got that uncomfortable chest tube out and one stitch put in
- pacing wires removed from chest
- had a chest x-ray
- bandage removed from incision site
- mildly sedated echo (he threw up the oral sedation, so instead of sleeping, he was just dazed)
- fasted for several hours in preparation for the sedated echo
- more wagon rides!
- lots of blood pressure readings - he does not like those

Levi looks good overall and like I said, they'd like to discharge him tomorrow. One thing they are still watching is his heart rate. It's a bit on the high side, trending up in the 170s at times when awake. They don't have an explanation for that yet, and it's being discussed amongst the team. Because everything else looks good, they're not especially concerned just yet. I'm hoping we get some more answers for that in the morning though.

It was a busy day and Levi is still short on sleep. I'm hoping he sleeps really well tonight.

Thanks for your continued prayers and support! Many blessings have come out of this whole crazy experience.

finding forms of entertainment

our friend Beth, one of the superstars who helped make this week a little easier

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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.