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| I got this off a website, I hope I don't get sued... |
I haven't really been thinking of Luke's heart. And maybe I should have been, a least a little bit more than I was because he has had a pronounced murmur since he was born (well, probably since before he was born, but they caught it during his initial screening). We've had to see pediatric cardiologists pretty regularly since he was born (and herein lies his intense fear and suspicion of doctor visits). The visits are pretty intensive, not painful at all, but they frighten him nonetheless. He has to do the normal blood pressure, height, weight, oxygen content in blood. Then they have to do an EKG and then he has to go into a room where they do ultrasounds of his heart so that they can measure all the chambers and the amount of blood that leaks back into his left ventricle.
Okay, back up, right? Because I never explained why he has the heart murmur to begin with. He was born with a Bicuspid Aortic Valve...your aortic valve has three leaflets that work together to open and close the valve and therefore regulate blood flow to the aorta. Two of his fused together before birth. So there is a gap between the two fused leaflets and the normal one. Which causes blood to leak back down into the ventricle, which causes the ventricle to have an increased blood volume all the time, but also causes it to try to pump harder. At our appointment yesterday (to which I showed up covered in Mikey's blood, more on that later), I was told that while he is still very healthy and not feeling any ill effects of the abnormal valve, both the ventricle and the narrow part of the aorta that leads from the aortic valve to the actual aorta then out into the body have dilated. Expanded. This is bad because eventually, as the ventricle has to try to pump more blood out of itself all the time, the muscle walls will thicken, but become less effective at pumping.
The doctor asked us to come back in 6 months so he can have a better idea of the rate of dilation, but said that he thinks that we will need to put L on some kind of heart medication to try to curb the expansion of both the narrower part of the aorta and the ventricle. He mentioned words like beta blockers and two other drugs that I didn't write down and so now I don't remember, but he also said they all come with side effects and we'd discuss them at the later appt. Now, I was floored. And crabby (all 3 kids at a cardiologist, thank heaven they have Diego movies!). The key, above all, said this cardiologist, is to try to prolong the amount of time before Luke has a valve replacement surgery. Because artificial valves don't grow with children, you have to keep replacing them as they grow. But he said emphatically that eventually he would have to have surgery and once he started meds for his heart (even before surgery), he would likely have to stay on some kind of heart meds for the rest of his life (after valve replacement, you have to stay on anti-coagulants forever).
All of this sounded strange because we are used to going to the appts, having them say, "Yup, it's gotten a little worse, but not badly enough for it to affect him. Come back next year!" We'd been told initially most people who have this condition don't usually have it addressed until they are adults (and by adults, one cardiologist said, he meant like 40s or 50s). Sometimes they don't even know they have it until they are in their 20s or 30s. I am an staunch optimist when it comes to the kids (though a pragmatist in most other areas, like F's work schedule), so I latched right onto the best case scenario and never looked back.
So: beta blockers floored me. We'd already been told that he shouldn't participate in impact sports like football or motorcross (which is fine by me!), but hadn't realized it was because people with BAV tend to have weaker aortas than normal...in further reading last night, we discovered that it is because BAV has been linked to a connective tissue disease which causes the aorta to be more prone to aneurysm and/or rupture (not a serious concern, not enough to treat L like a person with a weak heart, but something to consider if he is doing especially dangerous and might fall on his chest).
Now, I must say that I have been reminding myself of all the parents everywhere whose children have serious, life-threatening, and even fatal diseases and conditions...parents whose kids are terminal or incurable. I know that and I am really grateful that this seems to be, as F put it last night, "Just something we'll deal with." Medical technology is so amazing, especially in the cardiology field. I am trying to keep it in perspective, truly I am, because there is so much to be thankful for in L's case. But I was sad all day yesterday, thinking of my boy and his heart that doesn't quite work the right way. His heart that is not quite good enough for him. I felt a little betrayed by that damn valve (but I don't want to put it down because I don't want it to get mad at me and start obstructing blood flow (stenosis), which is an issue he definitely doesn't have at this time). I wanted to say, "The agreement was you'd work well enough to avoid any treatment until he was fully-grown!"
I'm thinking of L a little bit differently now, while knowing that I can't treat him differently or hover or protect him more without screwing up his childhood even more than I already am, abnormal heart valves aside. I think of that heart pumping in the darkness of his little body, how I haven't been worried about it, or wondered if it was doing its job. I took it for granted. Then I think of all the things you have to trust, the millions of little cogs in the wheel of Life we don't monitor (because we can't, but also because we shouldn't), all the routine movements that have to happen on every second of every day, over which we have absolutely no control, whose demise could have a great and/or terrible impact on us.
The lack of control. It is the hardest fact of being a parent. You have these people you love more than life itself, more than you'll ever love anything else; the people who have actually made your capacity to love greater by just by existing...and then you have to accept that you cannot protect them very much at all. I would give him my bicuspid aortic valve if I could, you know. So he could have every door open to him, every possibility available. (They can't do surgery to repair the flaps on L because in his case, it would do more damage to the valve than it could repair, although it does work in some cases, when the person with the BAV doesn't have to have it addressed until he/she is an adult.)
F thinks I am being overly dramatic and maybe I am. Or maybe I am feeling the things a mother feels when you see your child have any kind of struggle. I'm not sure. I was reading about all the valve replacement possibilities (would he like a mechanical one? one from a cow? Or a sheep? or a pig?) and what my mind was saying, "But I want him to just have a normal human valve! I don't him to do any of this stuff, it's too scary." But, as F says again (and significantly less emotionally than I have been over the last day or so), "We will play the cards we are dealt. And make the best choices we can make." Don't worry, there is no self-pity here...it's not a feeling of "why is this happening to me?" Why does it happen to anyone? It is genetic in our case, some dangerous DNA lurking in our blood (probably my blood as my family has had heart disease issues). It's just a feeling of, "Yup, it has to happen to someone, so why can't I be the one with the crappy valve??? He can have my healthy one!" But then you have to let it go because wishful thinking doesn't change a thing. Counter-productive and all that. Irritating to one's husband in the least.
So now we wait six months and go back and do it all again to see what they say about it. If you'd like to look at bicuspid aortic valves (or normal ones) here is a good, succinct article:
http://www.livestrong.com/article/218140-what-are-the-treatments-for-bicuspid-aortic-valve/
Also, here is where the Marston-ness comes into our day: we pulled into the parking garage at the Navy Hospital where L had his appt. As I am in the back, unbuckling Anna (I freed the boys first), L hops out of the car and heads towards the garage wall in front of the car. I panicked, as people drive like idiots in a hospital parking garage, so I try to lean out of the car to tell L to come back closer to the car before someone pulls into the empty space beside us, doesn't see him, and flattens him. In my haste, I didn't see that M was standing directly behind me and was about ready to jump out of the car. I knock him off balance, he lands flat on his face on the concrete. Blood. Everywhere. Think of an Old Faithful of Blood gushing all over him and me. I pick him up, trying to comfort him and staunch the blood flow. He refuses to allow me to do it. But since it has taken us 10 minutes of driving up 5 floors of parking garage, we have to get walking to the cardiologist's office. So there I am, holding Bloody Mikey in one arm, trying to hold a wipe to his nose with the other, towing L (who is holding onto the strap of my bag) and Anna (who is holding on to L) through the parking lot. A concerned Marine rushed over and asked if we were okay. And you know the blood is serious if the Marines stop to assist you. As we lumbered through the corridors, people gave us a wide berth (one man even said, "Wow! She brought a horde!" How did he know?)
So, we show up at the clinic and the receptionist says, "Ooooh....you have blood on your face" while handing me a tissue. And Mikey is still sniffling repeating, "I fell on my face, Mom." And L is proclaiming emphatically that he DOES NOT WANT TO BE HERE TO GET SHOTS! No matter how many times I try to reassure him it is not that kind of appointment....after a few minutes, M was up and running around and then on the way home, he started saying, "I fell on my face, Mom" over and over again. So I said, "I know, I am so sorry, sweetie! I didn't meant to knock you over!" And he laughed and said, "No, I singing my song, Mama! It goes: I drive a green tractor/I FELL ON MY FACE/I drive a steam roller/I FELL ON MY FACE/I drive a power shovel/I FELL ON MY FACE!!!"
Poor Mike, too...because later we went to the park and L was kicking a bucket swing. I said, "Luke, that is too wild around the other kids. Don't do that!" He ran past the swing, then reached around and swung it as hard as a 5 year old could. Right into Mikey's face. The face with the swollen/bloody nose and the road rash on his lips. Knocked the poor dude over backwards. Seriously! Here is poor M's face at the end of the day:
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| Mikey, the prize fighter... |
Anyhoo...now I've spent the first 40 minutes of the morning writing this post, so I'd better get cracking on breakfast. Just keep this in your head: Luke is fine. He's doing great. And his condition is treatable. And his mom is neurotic so she worries a lot. (Also, I am suspicious of medicine, so I am sad he might eventually be put on really powerful drugs with some considerable side effects for the rest of his life.) But life is good here...and we have much to be thankful for....to include french toast for breakfast, so I'd better stop typing so I might deliver on that particular promise.