It's What's on the Inside that Counts

McKay looks good these days. At 7 months, 3 weeks old he weighs in at a never-would-have dreamed-it 20 lbs 8 ounces. He's off the charts for his height and stinkin' cute. As we prepared to make our usual every two month check in with his cardiologist I thought it would be a good time to document not-so-tiny Mac's typical check up routine. I can't ever imagine forgetting what this experience includes, but someday we might be lucky enough to grow foggy on the subject. Mostly, I want McKay to know how proud I am of my brave little babe.

The visit always starts with a chest xray. McKay has a knack for falling asleep in his cozy car seat on the way up to the hospital, so getting undressed for the xray is made even more disorienting because each time we have to wake the poor thing from la-la land. He usually handles it in stride and even giggled at the tech this time. The inside peek the xrays give are always impressive (see above) and remind me that the real truth is a little more than skin deep for my guy.

This visit involved an echo cardiogram (basically an ultrasound of his heart and arteries) to examine Mac's most recent repairs. I was more than a little surprised when the procedure was scheduled to be conducted unsedated. After all, McKay is a very busy body these days. But he cooperated just long enough to get a solid peek at his pulmonary artery which showed good flow and led the team to believe the Glenn is doing its job.

Next it's on to an oxygen saturation, heart rate and blood pressure check. (You have to love the little arm cuff.) McKay has always hugged the low end of each of these measures. Yes, I am concerned to see a 74 percent blood oxygen level considering we're just 5 months post-Glenn, but it does follow suit for him. His cardiologist advised we get a solid sat check at least once a month going forward to make sure he stays stable. We've also been told that if we decide to fly anywhere, McKay will likely need oxygen to stay in the safe zone on the trip. Oy. The thought of bringing those awful green tanks back into our life is more than I can think about. Anyone for a road trip?

The most important conversation of the day centered on the selection of a surgeon for McKay going forward. It was obvious that the topic was still a fresh and emotional one for our amazing cardiologist. (Are you slightly concerned that McKay's as big as the cardiologist that's in charge of saving him? She's itsy bitsy, but optimistic and smart. I LOVE her.)

She assured us that an intense search is on for a senior cardiothoracic surgeon and whomever they find might be just who we need. Her plan is to do all she can through therapy and more minor interventions to keep McKay healthy enough to delay surgery until he's at least two years old. I was surprised by the news. Apparently by two, the chest cavity has enough room to put in a larger conduit during the Fontan procedure to last McKay a decade or two. As long as he stays more pink than blue during the process, I'm in. It was a little rattling to realize that if he needed his Fontan tomorrow, there is currently no one here ready to tackle the complexities of his particular anatomy. We chatted about several out of state recommendations and I feel confident she'll help us find the right person at the right time. Until then, the most important news is that we have time. Once again, it's comes back to realizing that making the most of today is the goal at hand. That assignment is so much harder than it sounds, but we're getting better at it.

So there you have it. That's the dance. It has a tricky, hurry-up-and-wait rhythm, but we're getting more comfortable with the steps. And as far as McKay goes--he's been pure music for all of us. The boy has heart.