Tethered Down and Cath Bound

Some days just don't turn out the way you hope. And when this is the view out your front door at five o'clock, you know it's been one of those days.

McKay's check-in with cardiology came none too soon according to his doc and his sats. Little Boy Blue's oxygenation has been steadily declining over the past few months and point by point he's earned his awful green tanks back. He bounced between 69-74% oxygen saturation today at clinic after a 77% three weeks ago at his pediatrician's office. That's a big thumbs down for a kiddo who should be hovering in the mid-80's post-Glenn and still has over a year until his Fontan. Yes, the tanks and tubes are back to be used "as much as possible" with a wiggly soon-to-be-on-the-move 10 month old and they brought a more permanent friend, a zealously labeled pediatric oxygen concentrator with them. It's loud and obnoxious and does not go with the decor. GO HOME. It looks like I'd better make peace with it, however, because they all may be overstaying their never-were welcome.

(If any of you experienced heart moms out there know any tricks for how to assure roly-poly oxygen-wearing babes don't get tangled up in the tubes at night, please share. Tonight I just ran the tubing down the back of his pjs and out the bottom thinking it would be harder for his neck to get tangled up that way--thoughts??)

More concerning is the fact that his echos (like an ultrasound of his heart) reveal nothing that would indicate such low sats. No valve leakage. No squeeze issues. All GREAT news, but a continuation of the mystery nonetheless. McKay's cardiologist believes he may have some rogue vessels around his heart that are trying to create detours for the blood flowing into his lungs. Basically, we all have more minor blood vessels throughout our bodies that are perfectly content to be part of a more secondary blood supply to organs and tissues. But when an organ or tissue is not getting as much oxygen as the body would like, some of these vessels get pushy and self-important and decide to take things into their own hands. Some of these vessels can grow quite large and divert enough blood from its normal course of flow to create some pretty major complications. Ironically, these vessels that are trying to help the body can end up doing far more bad than good.

So what to do? The only way to truly know if that's what is happening is a trip to the heart cath lab. Boo. I have truly been dreading this almost inevitable part of the heart experience. We successfully avoided the cath lab prior to McKay's Glenn because, I firmly believe, I begged God to please not to make him (read: me) have to go through it. So instead we got an MRI. Much better in my book. I know it seems silly in light of the surgeries McKay has had for me to wince so much at the cath lab, but it just gives me the willies to think of that small tube snaking its way from the artery in Mac's chubby little thigh all the way into his perfectly ingenious little heart. Yuck. Alas, I don't get to choose these things and McKay is clearly in need of some interventions so we'll be preparing for a trip to the cath lab in the next couple of weeks.

So tonight I'm sulking a bit. Okay more than a bit. I stopped at one of my favorite bakeries (and there are many) on my way home from the hospital today because news like that just needs a cookie. Sadly, the news doesn't taste any sweeter tonight than it did earlier today--I even had two cookies just to make sure the first one wasn't a dud. No luck. Blah.

I know this feeling won't last. The sun will come out tomorrow and Mac will most likely take his new situation in stride. He is a marvelous work and a wonder. He's also the toughest cookie I know. Here's to sweeter days ahead.