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A Light in the Middle of the Tunnel

August 3, 2006

How twisted is it that I’m comforted by being with Will’s cardiologist, and excited by the prospect of serious cardiac surgery? Who hears the words, “your son needs surgery soon,” and feels elation? Who greets a sonographer like an old friend? It’s a world turned upside down.

Will’s doing quite well, actually. Gaining so much weight that he now sports rolls in his wrists and chunky thighs, carrying just enough oxygen in his blood for the essential activities of his day, working up a glistening sweat as he eats about a third of each of his meals, and demonstrating good basic cardiac function. His doctor was very, very pleased. Which in his case doesn’t mean that he is getting farther from surgical care, but closer.

All of our efforts are toward hastening part two in the series of three heart procedures, and so we’re starting to queue up changes in medications, schedule EKG and echocardiograms, take chest x-rays, and plan a diagnostic heart catheterization. We’ll meet with the cardiologist again in early September, and then, if his cardiothoracic surgeon agrees, The Boy will have his second heart surgery (the Bidirectional Glenn) a couple of weeks after that.

And I know that on that day, I’ll eat all my words, and want to take back my feelings of excitement as we submit him to having his chest cracked open, and anesthesia, and the risks of surgery, and ventilators, and cardiac bypass, and the recovery once again. As I find myself once again pacing the halls outside the CICU waiting room, I’ll worry that we might lose him, and I’ll worry about complications.

But today, I’m relishing thoughts about the great improvements in his condition that we can expect after the Glenn, and the freedom from so many of the inefficiencies he experiences and interventions he suffers. And I’m wondering, with great hope, what my son will be like when his heart doesn’t have to work so hard.

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2 Responses to “A Light in the Middle of the Tunnel”

  1. Anonymous says:

    Just read this from Cincinnati Children’s Hospital:

    If a child with Hypoplastic Left Heart Syndrome reaches the time for the second stage (about 4 to 6 months of age) without major complications, the survival through the Glenn and Fontan operations are much better, exceeding 90 percent with current methods.

    I’m sure that’s no news flash for you two, but it made me so happy to read it and I thought I’d pass it on.


  2. Anonymous says:

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