Being a parent is often a crazy ride where you hold on for dear life and hope that somehow, some way you and your kids make it out safe on the other side. There are moments when your heart stops and you realize the enormity of what it means to have someone else depend on you for their very existence.
I have a knack for remembering obscure numbers and dates, but there are instances when something happens in your life and the date will remain etched in your memory forever. I've been going through a lot of those this year, hence the constant 'let's reexamine the past!' posts. The problem is that because it's been such a busy, crazy year, I haven't had the chance to sit down and document what's been going on in our lives and now that I'm starting to see the proverbial light at the end of the tunnel, it's time to spit it all out.
On April 2, 2012 TDH Man and I took GFord to a routine 18-month checkup at his pediatrician. He was just getting over a cold, but during the exam, the doctor looks at us and says "Have I ever heard a heart murmur on him before?" We said no, not that we could remember (and I doubt that we'd forget something like that!). Dr. D said "I'm sure it's nothing, but let's follow up, just in case". So, we leave that appointment and make a follow-up visit at the local Children's Hospital Pediatric Heart center.
April 24, 2012 rolls around and we drag GFord to yet another doctor's appointment. At this point, our boy is a pro at doctor's appointments (I'll post about that journey another time), but let's just say he's really well-behaved for the most part, especially considering he's a very active 18 month old. The cardiology nurse looks him over, asks us a bunch of questions and spends quite a while listening to G's heart. After a bit, she says "Well, I might hear just a little bit of a murmur, but it's barely there. It's really up to you; we can take a look by doing an echocardiogram or we can wait and see if it gets any louder." TDH Man and I decide that since we've already taken the day off work, it's better to just get it all done now while G is still being semi-cooperative. Looking back, I realize time and time again that this one decision pretty much saved our son's life.
The echocardiogram takes about 45 minutes and TDH Man spends most of the time distracting G with snacks and pointing out silly things on the walls or on the TV screen that's set up playing a DVD for him. I spend most of the time staring at the screen, watching the tech review the same spots over and over, turning the display into a million colors and shapes and holding my breath. He's so calm that I'm pretty much convinced that all is well and start to feel that this is just another instance of over-cautiousness on everyone's part. Once the ECG is over, we sit and wait until the cardiology nurse comes in to discuss the results. TDH Man and I take turns entertaining a now tired and hungry 18 month old who is dying to get out of this tiny exam room. The nurse comes in smiling and pulls up a chair and I'm thinking "Finally, we can go home!", except the next words out of her mouth aren't what we thought we'd hear.
"Your son has a rather large hole in his heart and he needs open-heart surgery right away".
My first instinct is to laugh, so I just smile really big and say "Really?!" like it's a joke and it's actually funny, except that it's not. It's really, really not. He's 18 months old. He's in the 99th percentile for height and weight; he hardly ever gets sick and both doctors BARELY heard any murmur. How can he possibly need open-heart surgery?
TDH Man and I sit there and absorb as much information as we can. We're told that he'll have the surgery at Children's Hospital Boston because they are the best in the country and the local Children's Hospital doesn't even bother performing this type of surgery anymore because Boston is so good at it. We're told that it's an 'elective surgery', which makes me laugh again because it doesn't mean what we think it means and we try every which way we can to weasel him out of open-heart surgery. "Elective, so like, we can choose to just NOT have it?" Um, no, we're told, elective like we're not rushing him to the hospital right this minute, but if he doesn't have it, he will most likely die before he's 18. That kind of elective.
TDH Man and I are librarians through and through and so, the second we leave that office, the research begins. GFord was diagnosed with a congenital heart defect called an Atrioventricular septal defect (AVSD) in the primum location. Basically, the hole that should have closed the second he took his first breath never closed. In fact, it was so big that it caused his valve to cleft and now his heart was swelling and was working too hard to get the blood where it needed to be. The murmur was so quiet because the hole was so big that there was very little tissue moving around to cause the usual noise. This defect is the kind most commonly found in Down Syndrome children and in those terrible stories you hear of teen athletes dying on the playing field with an undetected heart defect. And now it was in our baby boy.
So, a year has passed. Tomorrow is the anniversary of his surgery. I'll post more about it later, but for now, I just want to remember how thankful I am that we've all made it through with just this one thin silver scar.
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