The Wide World- a Post Super Glenn Debrief

It’s been three weeks since Liam was discharged post Super Glenn, two weeks later than initially projected. Six weeks before that, Logan and I were sitting helplessly in PCICU while cardiologists and surgeons scratched their heads unsure of why the lauded Glenn Procedure was failing our 4 month old son. I have joked, in my classically biting way, that I will need years of therapy for those 8 days alone, but the joke’s on my insurance provider because it’s true. Of all the things Liam has had to go through, this was the most harrowing yet. 

This truth is particularly galling given how this surgery was billed: easy procedure, fast recovery. A quality of life game-changer. None of those things happened for us. Maybe the last one, but not in the traditional sense. Liam is pinker and more vibrant for sure, but the Super Glenn continues on the shunt dependency that made the Norwood tricky. The Super Glenn puts Liam in a grey area of pseudo-Interstage, or purgatory, given the season. 

And ‘tis the season. For the rest of the world, it’s the season of pumpkin spice and peppermint lattes. For us, it’s the season of RSV and Flu, dangerous on their own, but potentially lethal for single ventricle babies like Liam. We’ve already passed around a cold and took a jaunt around Duke University Hospital for our troubles. Even though Liam did amazingly well with his Rhinovirus 2.0, the months ahead represent more than just shorter days and gloomy, overcast weeks- they are a constant roll of the dice on what kind of virus we might pick up and share with our fragile boy. 

There are evenings where I settle in to bed and reach for my phone to call PCICU for an update and then I remember that Liam is home and sleeping in the room just down the hall. Sometimes I swear I can hear the beeping of monitors when I’m in the shower. This is my normal and while I’m sure these acute sensations will pass with time, there is always a lingering fear that it will only take one misstep to be back in that place of uncertainty.

All that worry can a make a parent miserable and the truth is we can’t put Liam in a hermetically sealed bubble- the world is dirty and impossible to keep outside the four walls of our home. It would be hard enough with just the normal routines of grocery shopping and going to church, but Logan works at a hospital and we have a nearly 3 year old girl who touches everything and then sucks on her fingers. As a famous author once wrote, “The wide world is all about you: you can fence yourselves in, but you cannot forever fence it out.”

I have always been a “dirt don’t hurt” kind of mom. Eliza has been covered in the world’s bacteria since she came home and was immediately bathed in the sloppy kisses of our dog. Liam’s diagnosis has made me question everything about my parenting and I have swung from being que sera, sera to being a hyper vigilant germaphobe. Neither of which, by the way, is particularly wise and even the doctors have said, aside from practicing good hand hygiene and ensuring family and friends have their Flu vaccine, there is nothing we can do to keep Liam 100% safe. Eliza needs to bond with her brother- that includes kissing and holding. Liam needs his parents. Life is going to happen to this little boy no matter what we do. 

Of course, there are places where risks are significantly higher- like crowded places (ahem, church and the snot-filled kid classes therein), so even though we were thrilled to go to our first church service as a family of four a few weeks ago, that amazing sensation will have to tide us over until, once again, the color green graces the world.  

Until then, we will live our lives as balanced and as unafraid as we can. We’ll go on hikes while the weather holds beautiful. We’ll visit and be visited our friends. We’ll play at the park. Not only for our own sanity as parents, but because Liam has been subjected to the sterile white walls of hospital confinement for half his life and the world is sweet and meant to be savored, grime and all.