Thursday, August 07, 2008

Anatomy of Niko's Heart


That's a picture of a heart.

Niko was lightly sedated, so he went drowsily ballistic yesterday instead of full-on combat mode. It still took three of us to hold him down, and they couldn't get a great look at his heart. Or a blood pressure, or an EKG. But from what they thought they could see (always reassuring) his function looks fantastic, and there's no blood where blood shouldn't be. Next time they're going to put him under a general anesthesia so that they he's completely out and they can get accurate pictures. I'd been begging them to do this for two years, but what do I know? I'm just his mother.

So Niko's particular problems are: 1)Severe aortic stenosis and 2) acute pulmonary blockages. Actually, I should say that those WERE Niko's particular problems. They have improved dramatically as he's gotten older. Still concerns, yes. Severe and acute? Not anymore. But we're keeping an eye on them, hence these mark-of-the-beast cardiology trips.

Let me show you what I'm talking about! I so ripped this off from the doctor's office yesterday. Teach them to leave me in a room alone. :P

I colored the aorta red. It's the largest artery in the human body, and sends blood from the heart to wherever it needs to go. "Stenosis" is basically a narrowing in the artery. So you can have your aorta with a little section of narrowing, and that would be aortic stenosis. Got it? Except in Niko's case, the entire aorta is narrow. They considered surgery when he was younger, but they didn't have a surgery to basically replace the entire aorta, is my understanding. But as he grew, the aorta grew as well. Lots and lots of prayer and blessings, I 'll tell you that. Niko was a pretty severe case beforehand. He'd lie down on the floor in exhaustion and his lips would turn blue.

I circled the pulmonary arteries with purple marker. Niko had a blockage in each artery, so the blood could make it through, but just barely. And now? They mysteriously disappeared. Again, I point to prayer and blessings.

I have a short summary of some of his medical problems in the entry titled "Blood Belongs In The Body". You can find it by using Blog Search in the top left hand corner.

Of course we're still concerned for Niko's health. We keep a great eye on him. But it's night and day from what it used to be, and that's what I want to stress for the people who are reading and struggling with their own child's diagnosis, especially if it's recent. The first year or two is so difficult! It's so very hard, and you're overwhelmed and simply can't wrap your mind around the things that doctors are telling you. But please believe me when I say that it gets better. When you finally get your feet under you, you'll hit the ground running. I never thought that Niko could have the life that he has. He's happy and active, he runs and plays and doesn't take any medicine at all. He eats, he sleeps all night. He has friends.

You are all going to be okay. And life will be beautiful again, only better because you'll have this amazing little mischievous creature. It'll be the way that it was always meant to be, and most importantly, you'll all be happy. :)

I know that sounds hokey, but it's true. Humans are amazing and we're adaptable, and one day we look back at something that we thought would kill us, only to find that it has become a mere bump in the road.

3 comments:

Jeff and Ali said...

So glad to hear that Niko got a clean bill of health! He is sure a fighter. It was so fun to play with he and Nina over the 24th. You have two of the sweetest kids ever! You guys are doing a great job!

Every minute counts.... said...

I'm glad that things have improved with Niko's heart. That is my hope with Abi...at some point I get to hear nothing got worse! It really is amazing that his aorta got better, I have always heard the pulminary side tends to get better but the aorta typically doesn't, I am glad to know that Niko is not "typical ":) it gives
me hope. Our kids are amazing fighters, and they do it with grace and a smile on their face!
Noel

Andrea, Mrs. said...

Thank you for sharing. I feel so happy when I hear stuff like this. :-D