Post-Op Day 1

Levi is doing pretty well today.  Heart wise everything is looking good.  His stats are as they should be, with the exception being when he is agitated his blood pressure spikes and his oxygen levels decrease.  But as soon as he calms down, everything goes back to normal.

Last night James was with him much of the night.  He was extubated without any problems around 1:00 am, but had a hard night as he was quite uncomfortable and thrashing around.  The biggest challenge right now is finding a good combination of sedation and pain killers that work for him.  As of 7:30 am this morning he finally settled down and took a decent nap.  He woke around 10:30 am and has been in and out since then.  He is also already drinking from a sippy cup, holding it by himself.

The nurses are starting to pull some of his lines, so that should help with comfort as well.  He will continue to have a line in his neck for medications and blood draws, but the one in his right arm is being taken out soon.  This will allow him to suck his thumb, which will hopefully help him soothe himself.  He has one chest tube which will stay in at least another day.  I've been told this is usually very uncomfortable for kids, so it will be nice when that's gone.

Other than Levi's restlessness, he's stable and doing well.  This morning during rounds the doctors even mentioned Levi may be ready to move out of the cardiovascular intensive care unit (CVICU) as soon as tomorrow.  Then he will recover in what's called "3-West".  Instead of having his own nurse, like he does now, he'll share one and will be more on his own, with just James and me.  I'm a little nervous about that, but we'll see how it goes.

My aunt Jani is up helping and visiting right now.  It's been wonderful having her here for support, especially since we're so far from home.

Going back to yesterday's surgery, here are a few more details.  After surgery yesterday, Dr. Hanley stopped by the waiting area to explain how surgery went.  He drew a diagram of a normal aortic valve which has three leaflets that open and close.  Levi was born with a bicuspid valve instead, having only two leaflets.  One of those two leaflets was comprised of two cusps fused together at about the 80%, 20% mark.

When Levi had the balloon valvulopasty catheterization procedure at two days old, the balloon opened up his narrow valve, but it also destroyed that 20% part of the leaflet that I mentioned before.  Blood was then allowed to flow better through the valve, but that's also where the leakage then occurred.

So, yesterday, Dr. Hanley took a piece of the sac that surrounds Levi's heart, the pericardium, and sewed in that missing portion of the leaflet.  On a scale of 1 to 10, before the repair, the leakage was a 9, very severe.  After the first attempt at repair it was brought down to a 3.  Levi was taken off the heart and lung machine, his heart was restarted and Dr. Hanley checked the repair.  Seeing it at a 3, Dr. Hanley decided to see if he could fine tune the repair to make it even better.  Levi was put back on the heart and lung machine, and his valve was worked on again.  When tested a second time, the leakage was at a 1, which is mild.  When leakage is lessened, usually it makes the valve stenosis (narrowing) a little worse, so it's a fine balance.  The narrowing went from a 2 to a 2.5 after the surgery, still considered mild.  For those of you familiar with gradients, it went from a gradient of 15 to 18.  Dr. Hanley was very happy with the results.  So now Levi has a functioning bicuspid valve that will grow with him.  Will he need a valve replacement down the road?  Yes, most likely, but this could get him a number of years before that's needed.  Is there a chance that it could fail sooner rather than later?  Yes, but Dr. Hanley feels really good about this repair, so hopefully it holds steady for a long time.

While Dr. Hanley was in there he also removed some extra tissue from both below and above Levi's aortic valve that was also causing some blockage.  He then repaired the dilated ascending aorta.

A huge weight was lifted off of us when Dr. Hanley shared the good news with us.  We were so thoroughly happy and thanked him as best we could.  We praised God for his hand in all of this.

So now, we focus on helping Levi recover as best as he can.  It's tough going through something like this when you're one.  Big enough to know what you like and don't like, but not old enough to talk or understand why this is happening.  The nurses and doctors have been fantastic though and are helping Levi and our family through this.

Thank you all for your notes of encouragement and your many prayers.  We appreciate them more than you know.

Post-Op Day 1 with his Great-Aunt Jani