Big Heart Son

My second son (whom I often refer to as the Smaller Animal, or occasionally the tadpole) was born with a heart conditon.  At the time, I didn’t have a blog (were blogs even invented back then?^*), but I did have a website, since this was during the time I ran my own company.  So I took advantage of that and wrote a series of web pages about the experience.  Of course, my company is long gone, as are all its servers, and thus its website, but you know what they say ... the Internet is forever.  In this case, the Wayback Machine provides the trip down nostalgia lane.  The pictures are all gone, but the links all work and all the text appears to be there.  You could go read that, if you’re interested in a lot of details about the birth and medical stuff.

But it occurred to me that I haven’t really discussed the condition on this blog.  That occurred to me as I was telling people at my new work that I was taking the boy for his first treadmill test.  Of course, this being a new(ish) job, some of them had no idea what I was talking about.  (Some of them did, since I’m not the only person from my old job to land at my new job.)  Thus I was inspired to track down that very link to the Wayback Machine I threw out above.  Which is nice and all, and may be interesting to some, but it’s also pretty darned verbose—even for me—and very outdated.  The situation today is a little different.

First, the executive precis for those who don’t want to have to read all the gory details:

Your heart has 4 valves in it; their job is to open and close as the heart pumps so that blood can move forward where it’s supposed to go, but not backwards.  To do that job, they have flaps called “cusps.”  If the cusps don’t open all the way, that’s called “stenosis.”  My son was born with aortic valve stenosis, which means that blood couldn’t flow normally into his aorta because the valves weren’t opening all the way.  As a result, his heart had to pump much harder than usual.  That’s not sustainable, however, so doctors performed an emergency procedure on him to force the cusps open.  So now he has no problem getting the blood to move forwards.  However, when they force the valve open like that, it inevitably causes some tearing, so now the valve can’t close properly.  So the blood leaks backward (which is called “regurgitation”), and the flow can’t achieve full efficiency.  This is still a problem, but happily a much less serious problem.  The doctors estimated that my son’s heart wouldn’t last much more than a week with the stenosis.  With the regurgitation, it could last years, perhaps even decades.

It could last that long ... but perhaps it won’t.  In practical terms, that means that we’ve taken our child to get an echocardiogram (which is a bit like an ultrasound, except on your heart instead of your unborn child) every six months for his entire life, and it likely won’t be stopping any time soon.  This leads to an interesting cognitive dissonance: on the one hand, it becomes routine, almost commonplace; on the other, your stress level goes through six-month cycles of peaking to insane levels because you dread that this time is the time when they’ll finally tell you he needs the surgery.

Because the chances are very very good that my kid will, at some point in his life, need to have that valve replaced.  Which is a pretty scary prospect.  But there are important reasons for waiting.

First of all, whether it’s replaced by an artificial valve, a valve from a pig, or a valve from a human donor,^** replacement valves always wear out and have to be replaced again.  And, on top of that, replacement valves aren’t going to grow along with the patient.  That means that if you have to replace a valve before the patient’s heart is fully grown, you’ll have to replace it even before it wears out because eventually it will be too small.  So, the sooner you do the replacement, the more often you’ll have to do it.

The second important reason is that, if we had replaced his valve when he was born, that would have meant surgery, and any time you use the words “open-heart surgery” and “newborn” in the same sentence, that’s pretty damned scary.  Even today, if they tell us it’s time to do the replacement, we’ll still be talking surgery—specifically, a Ross procedure, which means swapping the aortic valve with the pulmonary valve (because the pulmonary valve is in front of the aortic valve, it’s easier to replace; therefore, you replace the bad aortic valve with the patient’s own pulmonary valve, which will grow along with his heart, then the replacement, which you know won’t grow and will eventually wear out anyway, goes in the pulmonary position where it’s easier to get at for the next surgery).  However, today they can also replace a valve without surgery: it’s called transcatheter aortic valve replacement, and it means that, instead of having to cut the patient open, they can use a cathether (small tube) threaded through the arteries and into the valve, and replace the valve via the catheter.  Now, today, they will only use this procedure if the patient absolutely can’t handle the surgery for some reason.  But, in the 8 years my son has been alive, it’s progressed from “theoretically possible” to “a viable alternative that’s almost as good as surgery.”  If we can wait 8 more years, maybe it’ll be better than the surgery.

So we wait.  The doctors assure us that it will be a very gradual change; we won’t be in a situation where we go in to get a check-up and they end up rushing him to the hospital (which is what happened when he was 2 days old, so thank goodness we won’t have to go through that again).  In fact, they told us that, if they identify the problem during the school year, they’ll most likely schedule the surgery for the following summer.  You’d think this would make it better, and I suppose in some ways it does.  But it also means that you tend to memorize every number they throw at you (thickness of the heart wall, pressure gradient between systole and diastole, size of the area allowing the leakage, etc) then freak out whenever one of them gets bigger.  Even though, of course, you have no real concept of scale for any of these figures.  Also, there isn’t just one number to focus on: there’s lots of them, and they interact in non-intuitive ways, and just because one gets worse doesn’t mean you should panic.  But it doesn’t mean you shouldn’t, either.

So now that my son is 8 years old, his cardiologist recommended him for a stress test.  Just like an adult would, he runs on a treadmill, all wired up on a continuous EKG, and then they do an echocardiogram after he gets tired to see if heavy exercise is likely to cause any problems that they couldn’t detect while he was just laying quietly on the table.  We went for this test two days ago, and I think he did pretty well.  His heartbeat didn’t get too high, and, from what limited ability I’ve picked up to read an echo over the past 8 years, I didn’t see anything to be concerned about.  His breathing was never labored; at his age, they stop the treadmill after getting up to 3.4MPH with a 14% incline, but I think he could have gone on to the next stage.  We still have to wait for the cardiologist to review the results, but it seems like, for now, we’re back to waiting.

One thing that struck me as I reread what I wrote 8 years ago is this quote from near the end:

We choose to believe that kharma, or the cosmos, or maybe even some supreme being somewhere (your “deity of choice”, as I am wont to say) is trying to tell us something.  We’re not entirely sure what it is yet, but we’re tentatively operating under the assumption that it has something to do with appreciating each other more, and letting go of the little things.  After this experience, some of the things that might have upset or worried us before seem a bit petty now.

And, hey, if that’s the wrong lesson, or even if it turns out there’s no higher power running around the universe at all, it’s probably still a decent attitude to cultivate.

I’d like to tell you that we took this lesson to heart and never let petty things get to us any more.  But I’d be lying.  Perhaps it’s the routine of the continuous tests that never seem to get easier but happily never bring bad news.  Perhaps it’s our attempts to make sure we treat our middle child just like our other two children—it’s desperately difficult not to spoil a child with a life-threatening condition hanging over his head, and I’m not entirely sure we’ve succeeded.  Perhaps it’s just that anything—even the terror we went through after his birth—can be internalized, categorized, and put behind us.  We move on with our lives, and that means we fall back into our normal behaviors, for better and for worse.  Sometimes I think that, as stressful as that time was for us, we’d do well to keep it close.  Most of the family arguments we end up having really do seem silly in the light of this sobering truth that we live with (and mostly ignore) every day.

But it’s also true that I feel lucky that we can have those silly arguments.  Without him, I don’t know that we’d be having those arguments, or even any arguments.  We wouldn’t be who we are.  No more so than the other two, but certainly no less so either, our leaky-hearted son is part of what makes us us, both individually and collectively.  I’m glad we got to keep him.  Hopefully that will continue for many years to come.

* Wikipedia says they were.  Happily, I was blissfully unaware of them.

** Interestingly, pig valves are more commonly used than human ones.  This is partially because replacing human valves is more complex surgically, and partially because heart valves are in short supply.  I guess that latter is because it’s pretty rare that you’d find a heart where the valves are working well but the rest of the heart is damaged, and, if the rest is not damaged, they’d want it for a heart replacement and not just cut the valves out of it.

Ponderings of the Season

Easter’s a bit of a schizophrenic holiday, when you think about it.  On the one hand, it’s Ēostre (sometimes called Ostara): a festival of fertility, associated with eggs and rabbits.  On the other hand, it’s Pascha: the celebration of the resurrection of Jesus.  I suppose these two are vaguely related; there’s possibly some correlation between the rebirth of the world in spring after the deadness of winter and the rebirth of Christ after being more literally dead for three days.  Perhaps that’s why the early Christians absconded with the established pagan holiday (where “pagan” here has the traditional Christian meaning of “non-Christian infidel”).  Early Christians were good at absconding with holidays.  One of the reasons they were so successful.  Sort of like cuckoos.

Anyhow, in our house, we definitely celebrate Ēostre more so than Pascha.  No offense to our Christrian brethren and sistren; we’re just more into the whole stuffed bunnies and plastic eggs full of candy thing.  The kids dig getting Easter baskets.  Woke me up at the ungodly hour of 9am to gush over their candy and books.  And the stuffed bunny as big as my daughter’s head.

Now, my children are 15½, 8, and 2.  Which makes hiding Easter eggs a challenge.  This year I hid them in 3 distinct groups: stupidly easy (like, if you’re not careful you might trip over them), moderately tricky (like, you’ll have to work a bit to get these), and heinously evil (like, good luck pal).  We let the sprite out first to recover all she could, then the tadpole followed to find what he could, then the demonspawn, playing cleanup.  I hid 58 eggs (who knows what happened to the other two?) and we recovered 57.  The other one will probably sit out there until next Easter.  Or until the ants find it.  Of course, at that point, it’ll be easy to locate: just follow the line of hyperactive sugar-junkie ants.  So that’ll be nice.

Other than that, it’s a nice lazy day.  The pool is finally warm enough to get in, so I’m sure there will be some water activities later in the afternoon.  And lots of jellybeans and chocolate to make my children impossible to live with.  Hopefully there’ll be some reading too, at some point along the way: books for Easter is a family tradition that we fervently uphold, even though none of the kids seem as interested as we were at their ages.  The youngest, perhaps.  She’ll bring you a book and demand you read it over and over again.  If she’s in the mood.

So that’s my day today.  Hopefully all you reading this will have a lovely Easter as well, or whatever springtime celebration you favor.  Next week may bring us a fuller post.  Or perhaps not.  But, as the world is being reborn after the dying days of winter, so too may this blog see a rebirth of creativity.  Then again, I live in California, where “winter” means it got down to the 50s a couple of times.  So it’s not like I have any excuses anyway.  But that’s why I tell you not to read this blog.  Or one of the many reasons, at any rate.  But you’re very persistent, apparently.  I’ve always admired that about you, you know.  It’s one of your better qualities.  Keep up the good work.

Smoke and Mirrors

or, Why Do People Have to Suck?

It’s been a while since I had a good old-fashioned rant on this blog.  As one gets older, one must keep one’s blood pressure down, you know.  So perhaps I’m just overdue.  But this new ban on e-cigarettes by the Los Angeles City Council is just too much.

(Warning: If crazy ranting and/or dropping the F-bomb offends you, please bail out now.  I must remind you yet again of the name of the blog.)

Some background: I started smoking at 18—later than many, I suppose, but long enough ago now that it’s unlikely that my habits are going to change at this point.  I was in my freshman year of college, my first time living away from home.  I had a roommate who was a bit of a dick, college classes were tough (not unexpected, but it’s one thing to know how tough they’re going to be and quite another thing to experience it), my grandfather had just died, and my situation with my parents was very rocky at the time.  For some reason, walking around campus late at night one night, feeling pretty crappy about life in general, I had a sudden urge to smoke.  I have no idea why: the only time I’d ever even tried cigarettes before was under the bleachers when I was 14 or 15 once, and I’d absolutely hated it.  No one in my family smoked: not parents, grandparents, aunts, uncles, nor cousins.  My grandfather’s elder brother was a 3-pack-a-day man, so I’d heard, but I’d never even met the man, or didn’t remember if I had.  Both my grandparents on my mother’s side used to, I was told, but they quit well before I was born.  My dad had one friend who did, and we all felt it was disgusting, myself included.  There is no earthly reason I can come up with why I would have thought smoking would help relieve my stress, or that I wouldn’t choke to death just trying it.  But, for whatever reason, I had a sudden urge, and I went to the store, and bought a pack of Yves St. Laurent menthols.  And, if you know anything about cigarettes, you’re probably snickering to yourself about now, because YSL is typically considered a “woman’s” brand.  But I quite liked them, as it turned out, and never had a problem with smoking “girly” cigarettes (nor with drinking “girly” drinks, although that’s a whole different topic).

For about 8 years I smoked anywhere from half a pack to a full pack a day of menthols.  Then a friend (and fellow smoker) convinced me to try CigArrest with him.  I found that all the herbal/homeopathic crap was totally unnecessary for me; the behavior modification tips were what really worked in my case.  Soon I was smoke-free, while my friend had relapsed.

I stayed off the smokes for 3 or 4 years, but stress has a way of creeping up on you.  And I still had that weird urge that I couldn’t shake whenever I got stressed.  I picked up a pack of cloves one night, telling myself that they weren’t “real” cigarettes.  But of course cloves have just as much tobacco as other smokes, plus they tear your throat up.  (This is because the eugenol in the cloves temporarily numbs your throat, which allows you take in more smoke more directly, which leaves you in a pretty sad state once the mild anaesthetic effect wears off.)  I eventually made a deal with myself: I would go back to smoking, but not menthols any more.  I would smoke ultra-light regulars in the hopes that I wouldn’t enjoy them as much and therefore wouldn’t smoke as much.

Believe it or not, that actually worked.  For the next roughly 15 years, I smoked no more than a pack a week, on average.  During stressful times, I would creep up to perhaps two packs a week, but during calmer times I might drop as low as half a pack a week.  I was pretty happy with this level of smoking.  It kept me calm and sane, and it fulfilled my worldview of “everything in moderation.”  (Yes, even smoking isn’t all bad.)  So everything was good until another friend convinced me to stop smoking with him, and this time the method was e-cigarettes.

I love e-cigarettes.  I can smoke whenever I like, for as little as I like.  It used to be a chore to have to finish a cigarette, but I also hated wasting them, especially since they’re stupidly expensive.  Now I can have a puff or two and put it away.  Or I can smoke for half an hour straight if I want to.  Except I’m not actually smoking: e-cigarettes use flavored water vapor.  So not only do I not get any smoke, neither does anyone around me.  It’s just water vapor, which my exhalations contain anyway, except you can see it ... no different from when I breathe out on a cold day.  And I’m paying less now, and I’m back to menthols, and I’m “smoking” more while smoking less, ’cause I’m not smoking at all.  Also, I’m not even inhaling any nicotine.  Oh, sure: many—most, even—e-cigarettes have nicotine.  But you can get them without, if you so choose.  And I do so choose.  As it happens, I don’t need the nicotine any more than I needed the herbal whatever-it-was: once again, it’s the psychological aspect that’s key.  I just need something to puff on.

So I’ve been doing e-cigs for a few years now, and you can see why this kind of crap from the LA City Council really chaps my ass.  First the anti-smokers told us that the tobacco companies were adding all sorts of horrible crap to cigarettes and that’s why they were so terrible for you.  The tobacco industry responded by coming out with additive-free brands like American Spirit, and even changing some existing brands to be additive-free, like Winston (both of which I’ve smoked).  The anti-smokers promptly freaked out and pursued legal action against both brands.  These suits were designed to force the companies to admit that additive-free cigarettes were ”‘no safer or healthier’ than other tobacco products.”  So, wait: the additives make them bad for us, but taking them out isn’t better?  What kind of fucked up logic is that?

And now somebody comes along and invents a “cigarette” that doesn’t even involve any actual smoke.  The anti-smokers were counfounded by this new developement for a while.  Inhaling and exhaling water vapor certainly isn’t bad for you.  It isn’t even bad for anyone standing next to you.  How the hell can we object to this, they wondered?  We better find some way: if people continue to exercise their freedoms in this way, anarchy will surely ensue!

So, here we are, with the LA City Council apparently not the first nor likely the last.  It was damned difficult, but they finally thought of something to object to:

Foes of e-cigarettes said they threaten to make smoking socially acceptable after years of public opinion campaigns to discourage the habit. Young people who get hooked on the nicotine in e-cigarettes may then turn to tobacco use, said Jonathan Fielding, director of the Los Angeles County Department of Public Health.

Ah, yes, the classic “slippery slope” argument.  We all know how awesome those are.  Because they don’t require any proof.  Hell, they don’t even have to make any sense.  Allow gay marriage and pretty soon people will be wanting to marry turtles.  That follows, right?  Let me ask you this: what is more likely?  That e-cigarettes will get people off smoking in such numbers that it will radically reduce the amount of second-hand smoke you’re exposed to?  Or that, by exposing children to them, we’ll teach them that there are ways to be responsible with your vices in such a manner so as not to endanger yourself or others?  Oh, wait: those are both positive outcomes of staying the fuck away from my e-cig.

What I can’t understand is how I became a persecuted minority.  And not only a persecuted minority, but one that it is perfectly socially acceptable to persecute.  Encouraged, even.  Let’s think about this for a minute. Every day, you breathe a metric fuck-ton more car exhaust than you do second-hand smoke (and that was still true back in the days before smoking was banned everywhere).  But we don’t disallow driving in public, do we?  And then there’s alcohol: even if you believe the wildest statistics about the dangers of second-hand smoke, they pale in comparison to your danger of being hit by a drunk driver or shot by a drunk gun-owner.  So do we ban alcohol?  God forbid we let the little children see us driving, or drinking ... who knows what that could lead to?

I don’t work within the city limits of LA, so I’m not banned from using my e-cigarette at work.  Nonetheless, my boss asked me to stop because of complaints (more likely a single complaint) from one or more co-workers.  On the one hand, this doesn’t bug me that much.  Hey, I go around everywhere with no shoes on: I’m already used to people being dicks about my lifestyle choices.  But on the other hand, it’s really dispiriting to be punished for making such a positive change in your life.  Imagine that you embarked on a fantastic new effort to get into shape by riding your bike to work every day, and, just when it was starting to work and really show some positive results, your co-workers started a campaign to keep big, clumsy bikes out of the office.  They’re unsightly, and you could bump into people with them, and who wants potential customers having to come in here and see bicycle parking?  (Before you laugh and say this is a ridiculous example that would never happen, I have to tell you this actually did happen to a friend of mine at my last job.)  So, of course we would never tell you that you can’t ride your bike to work; you just can’t bring it into the office.  Park it outside.  Where it might get stolen.  Or rained on.  Or vandalized.  You’ll probably need to buy an expensive new bike lock, if you can even find anything convenient to chain it to.  But, you know, definitely keep riding your bike to work.

This is exactly how I feel.  Sure, I can still use my e-cig by going outside.  Just like the bad old days when I was actually smoking.  I can interrupt my train of thought, go down three stories, hang around outside for a while, then come back, try to figure out where I left off, and eventually get back up to full productivity again.  I don’t have to wonder if that’s how it will work: I’ve been there.  I already know how it works.  So, sure, I could do that.  It’ll cost me time, effort, and mental capacity, which means it will cost my company money, but I can do that.  At least my co-workers won’t have to ... well, what?  They won’t have to breathe my second-hand smoke?  They’re already not doing that.  They won’t have to breathe my second-hand nicotine.  Nope, already not doing that either.  They ... won’t have to breathe my second-hand water vapor?  Ummm ... I got news for you, people: you’re breathing my second-hand water vapor, every day, whether you can see it or not, just like I have to breathe yours.  My boss, casting around for a rational reason, vaguely suggested that perhaps it was the smell that bothered people.  But, remember: I smoke menthols.  The smell of my “smoking” is a variation of mint.  So that one doesn’t make a lot of sense either.

I suppose the primary benefit to my co-workers (or more likely one particular co-worker) is the smug sense of satisfaction they’ll have that they successfully trod on someone’s freedom of expression.  Speaking as a fellow who’s gotten kicked out of a hell of a lot of places for being barefoot, I can tell you with some authority that you should not underestimate this.  I was once kicked out of a record store by a guy with about 15 earrings in one ear and blue hair, essentially for being non-conformist.  There are some people who enter the service industry to actually be helpful to people, but there are plenty who find a great comfort in being able to tell people what to do.  Makes ’em feel powerful.  Makes them feel like they control their world, and I’m guessing they have a desperate need to feel that.  And I’m sure there are plenty of people out there who have that issue and yet don’t go into retail.  Whatever will they do?  In my experience, they generally become middle managers for medium-to-large companies, where they can boss people around and feel really important.  So I sort of feel like I have a co-worker (or two) who’s missing their calling.  But, hey: there’s yet time.  This is a great start towards their lifelong dream.

Best of luck to ’em.

Another Birthday Weekend

This weekend marks the end of our March birthday season.  We still have a Virgo birthday season coming up, and then a single birthday soon after that.  But the March season is our busier time, as both those birthdays are children’s birthdays, and those are more exhausting to deal with than parent birthdays.  Parents tend to have moderately sedate birthdays.  Probably from being so tired after dealing with all the children’s birthdays.

In our family, we have the tradition of “the birthday weekend.”  This is a weekend, typically either the one before your birthday or the one after, where you call the shots.  You say what food we eat, what outings we do (within reason), and what activities we do at home.  If there are games to be played, you pick ’em.  If there are movies to be watched, you say which ones.  You say when we go outside and play with chalk on the patio, or get in the pool or jacuzzi, or just fire up the bubble machine.  Or you can decide that we should sit on the sofa and chill out, in which case (naturally) you get to control the remote.

So your birthday weekend is all about you, which is as it should be.  In a family of five, you’re constantly fighting for attention, so there ought to be at least one time in the year when you can get it for free.

This birthday weekend is for our youngest, who’s just turning two.  At that age, it’s a lot more difficult to figure out exactly what she wants us all to do, but we do the best we can.  We let her pick out a bouncy castle, which we had planted in our driveway all day Friday, and we invited over our Sister Family to share the bouncing, the jacuzzi, and some cake.  It was a rainbow cake, with rainbows on top made out of Twizzlers.  The Mother made a rainbow fruit plate out of watermelon, cantaloupe, pineapple, green grapes, blueberries, and red grapes (which are of course purple).  We had rainbows coming out our butts.

Yesterday we chilled at home and ordered pizza and pasta for dinner (which are two of her favorite things to eat).  Today we went out shopping.  We went to a Toys “R” Us, which currently has a bunch of stuff on clearance.  Typically “sale” prices at TRU means only slightly more expensive than everywhere else (as opposed to way more expensive than everywhere else), but we got some pretty good bargains today.  Maybe Amazon is about to put them out of business too.  Wouldn’t surprise me.  (Or disappoint me, really.)

This particular Toys “R” Us that we went to is a combo TRU and Babies “R” Us store.  This meant that our two-year-old got to go clothes shopping.  She picked out about 15 dresses, which we finally managed to whittle down to 3.  After dealing with that, she found the shoe section.  She immediately plopped herself down and started to take off her shoes so she could try new ones on.  “Oosh!” she said, pointing, which is how she says “shoes.”  Stop and think for a moment about how terrifying that is.  Two years old and she’s already excited about shoe shopping.  This is a long, expensive adolescence I have ahead of me.

In any event, that’s been my weekend, so I’m pretty exhausted at this point.  Being at the beck and call of a two-year-old ain’t easy, ya know.  But at least now we’re good until late August.