Here to Stay

Over the course of the Halloween weekend, the third musketeer went from this:

to this:

And the verdict is that he will stay tethered for the foreseeable future. After a weekend experimenting with extra oxygen support, McKay's cardiologist suspects more renegade collateral veins have sprung up around his heart and have been steadily causing his sats to dip over the last several weeks. Basically, the body is growing new veins to "help" his heart, but they are wreaking havoc on his ability to oxygenate his blood. Last time this happened they whisked Mac right in for a heart catheter and coiled off the vein. Not so this time. His docs feel it's too soon (the last procedure was just performed June 30, 2009) and if we pursue cathing and coiling each time, it's a dangerous dance he will most likely continue to repeat.

So for now the thought is to let those nasty collaterals have their day just so long as McKay is stable when he's on oxygen. It's been amazing over the past week to realize how blue he truly has been. He gets a good 8-10 percent bump in blood oxygenation with the support of the tanks which puts him between 80-82 percent--the same levels he was hitting in July following his cath. When we take the O2 off to bathe him or change his clothes or even just to give him a trial run at sustaining the 80 percent range on his own, he quickly takes on the now more noticeable bluish hue that we had thought normal just a week ago and rings in at a disappointing 70-72 percent.

Honestly, if McKay can survive being the little brother of these two crazies, I think he'll be good to go.

My main concern at this point is to get him feeling better. I want him to be able to play and climb the stairs and drive me crazy like every 14-month old should do. He does a good job for the most part, but it could be better. I am also extremely concerned with the long-term effects of such low saturations. What does it do to a rapidly developing brain to receive oxygen as though you live at the top of Everest every day? Disappointingly, no one has any good, long-term answers for me on that front.

If I'm being totally honest, I'm approaching panicked that the child has NO words at this point. Not momma. Not dada. Nothing. He occasionally babbles--but only occasionally. The strong, silent type? Maybe. But it's hard for me to separate what's normal baby stuff and what's a side effect of his funky physiology.

We're off to the pediatrician's now to get his ears checked once again. The child has battled chronic ear infections for the last three months. At 3:30 this morning he was as inconsolable as I've ever seen him. For McKay to be brought into mom and dad's bed, given a bottle and propped up to watch his favorite episode of the Little Einsteins only to continue wailing indicates a serious problem. Rocket can usually sprinkle sunshine all over his face no matter the situation. I'm anxious to see what's going on.

So that's that. Whaddya gonna do? It looks like we'll be corralling a tethered toddler until either his sats start to slide even further or we find ourselves a surgeon and McKay is deemed physically large enough to pursue the Fontan. There are several complications to his Fontan operation that make the cardiologists inclined to wait. Not the least of which is the fact that because of his dextrocardia (his heart lies inverted on the right side of his chest) the Fontan repair will have to be modified so that his heart doesn't actually sit on top of the new vessel. Sheesh--I'm so grateful there are smarter people than me in the universe who are willing to figure this thing out.

One great victory to report this week, however, thanks to some incredibly thoughtful neighbors and 45-minute drive to Provo, the boys are now all vaccinated against H1N1. I sure hope finding round two of the shot proves easier than round 1.

We've decided to get pretty vigilant about McKay's isolation considering all the bad junk floating around our neighborhood and workplaces. So if you're well and you want to play, please come over and give Mr. Mac a change of scenery. We may get him climbing the walls from sheer boredom by the end of the season.

Here's hoping for just a few more sunny, crisp autumn days. xoxo.