Friday, May 23, 2014

Heart Doctors & Expectations

If you follow me on Facebook or have spoken to me (even in passing) in the last week, then you are well aware that today was Roo's annual cardiology appointment. I can't say that I've been exactly worried about it--in fact, I really expected it to be rather uneventful--but it was something that has been on the forefront of my mind.

So let me start by giving you all some background. When Roo was diagnosed with Down's, one of the first things they asked us to do was see a cardiologist. Approximately half of all babies with Down syndrome are born with heart defects, so although we hadn't had any outstanding concerns up to then, a checkup seemed like a good idea.

At our first appointment, Roo was diagnosed with an Atrioventricular Septal Defect (ASD) and a Ventricular Septal Defect (VSD), two of the most common heart issues in babies with DS. You can read more about them here, but they are essentially holes in the heart. The ASD, usually the cause of greater concern, was quite small, and the heart had already started to grow tissue around it. The doctor was confident it would close itself completely within the next few months. The VSD, though, he believed was too big to close on its own and would need to be repaired. Fortunately, it wouldn't affect him for several years, so he told us to expect the repair to happen around age 5--AND it could be done without open heart surgery, but would simply involve a heart catheterization and an overnight stay. Until then, he just wanted to see us about once a year. All-in-all, it was much better news than it could have been.

The following year, the doctor also discovered a cleft mitral valve. This essentially means that a valve between two of the chambers wasn't/isn't closing all the way, which allows a little bit of blood to leak back into the incorrect chamber when the heart pumps. It was a minor leak, and again he just wanted to monitor it. The best news out of that appointment surrounded the VSD, which had shrunk to less than HALF of its original size. He said that was quite unusual for a hole of that size, and told us if it continued to shrink, Roo may not need to have it repaired at all.

We went back again when Roo was 2 1/2. At that point, Roo was the fun-loving (ahem, non-stop-moving) child we all know and love, and the cardiologist recommended against doing an echocardiogram. He knew that the idea of getting Roo to lie still for 45 minutes was laughable, and since he wasn't overly concerned about any of the defects, he told us to just come back again in a year.

Which brings us to today. OK, it was a year-and-a-half. Somebody I know is a procrastinator. Just deal with it.

Anyway, we went to the appointment this morning, and as some of you know, it did not get off to the best start. He completely flipped out when the nurses tried to take his blood pressure and do an EKG, making the results absolutely worthless. He cried so hard he was shaking, the poor baby. It's funny to me, since they weren't doing anything that hurts, but I think he's been to enough doctor's visits that he just hates being messed with.

And then we waited for the cardiologist. Fortunately, Nickelodeon must somehow have been made aware of this impending appointment, and they released several PAW Patrol videos for the Leap Pad last week. I may or may not have spent an hour-and-a-half last night getting them downloaded just for this morning. Whatever. It was worth it.

When the cardiologist came in, I thought, "Oh good, we're just about done!" If he didn't want to do an echocardiogram on 2 1/2-year-old Roo, there was no way he'd attempt one on 4-year-old, already-freaking-out Roo.

I was wrong.

After going over Roo's history (which began with, "I remember you, Buddy! You're bald!" :-) This kid is rocking that bald head, I tell ya.), he listened to his heart and told me that he could still hear some leakage from the cleft mitral valve. He explained that this could be repaired, but it would require an open-heart surgery--and if they did that, they would probably just repair the VSD at the same time. That was a little disconcerting, since my big comfort for this whole surgery was that his chest wouldn't need to be opened.

And THEN he said, "You know, we didn't do the echo last time, so it's not a bad idea to try it this time. I mean, I know it may not work, but it's worth a shot. If we can't get it, we'll try again next year."

Are you kidding me? You think this kid, who lost his ever-loving mind over a blood pressure cuff, is going to lay still for 45 minutes while they rub gel and a wand all over his chest?

OK, if you say so.

I might have been a little skeptical.

At first, it seemed like a total disaster. Roo laid down on the table, they put a TV with a baby signing video right by his face, and asked me to hold his hands. As soon as I did that, he started arching his back and kicking and crying and... it wasn't pretty. BUT I managed to hold both of his hands in one of mine, then I used my other hand to hold down his legs. And although he would periodically remember that he was supposed to be unhappy and give a half-hearted cry/struggle, overall he got pretty entranced in the video and was relatively still. Still enough for the tech to get every shot he needed in about 25 minutes. Hallelujah! (I would have taken a picture of this, but A-both of my hands were fully occupied in HOLDING MY CHILD DOWN on the table, and B-there was a big sign in the room that said, "No pictures or videos, please!" Gotta love us snap-happy moms...)

And then back to wait for the cardiologist. At this point, Roo finally find something that made him happy...

He would stack the blocks, count them (I know!!!!), and then say, "Woo-hoo! Yeah!" for himself. Over and over and over. But hey, he was happy, so I wasn't arguing!

But back to the appointment. I'm not gonna lie. At this point, I was preparing myself for him to come in and say, "So, I think we'll go ahead and schedule the surgery now--there's no real need to wait until he's 5."


He said that BOTH holes in his heart have completely closed! He doesn't need the VSD repaired at all! I know... I know I should have half-expected this, since it had started to shrink already... but I just can't tell you the relief. I just. I don't even have the words.

And the mitral valve, well, that's still leaking. BUT it is small, and the leak is minor, and it is not causing any enlargement in either chamber (which is the biggest concern). He said, "It can be repaired, but right now I don't see any need to." He asked us to come back in a year, and I'm guessing he'll want to check on that every 1-2 years until Roo is an adult, since he and his heart will be growing. But he seemed quite confident that this would need be an impediment. He cleared Roo for all activities, sports, etc. No worries.

I managed to wait until I got in the car to cry.

I am still a little astounded at the relief I feel from all of this. It really isn't that different from what I had expected going in. But when I told Mr. Fantastic about it, he reminded me of why I may have gone to that appointment holding my breath. Because 4 years ago, we walked into a doctor's office and expected a quick blood draw and a "everything is fine, you guys are good to go!" And instead we left with a diagnosis and our world turned upside down. So now with every single doctor's appointment, even when we don't expect a problem... part of us does. Part of me is waiting for the other shoe to drop, waiting to hear about that something that we missed. That's something that changed for me that day in the geneticist's office.

I expected to leave the cardiologist's office with no real news. And then again, I expected to leave in tears, calling my hubby with news of surgery to schedule or another defect found or... worse.

But I didn't leave with either of those. I left with good news and relief and a reprieve. And it felt wonderful. I did leave in tears, but good tears.

To celebrate, I took Roo (who was nonplussed by the good news, and recovering from the traumatic experience of being touched by doctors and nurses) to his favorite restaurant for lunch. Then I ran into Target for just a couple of quick things. Apparently being a major grump all morning gets all of the grumpies out at once, leaving lots of room for giggles and silliness...

And then, exhaustion.

A much-deserved nap, my little guy. It's been quite a day.

1 comment:

Wendy said...

Glad to hear it went well. I really must do better following your blog!