The Pratt's Guide to Heart Warrior Parenting

What a difference 24 hours makes. This time yesterday, Liam was being wheeled back into the OR for a last-ditch effort to bring him back to the land of the oxygenated living. Today, his saturations are 20+ points higher and his little body is pink and on the mend.  There are different, non-medical, terms for the Glenn + Shunt: The Shenn , The Glunt , and my personal favorite, The Super Glenn . In talking with Duke’s Chief of Pediatric Cardiology yesterday, it seems as though there is a small subset of HLHS kids who just need more than what The Glenn has to offer. As of now, there is no research that would provide clarity on the existence of indicators which would point surgeons to an immediate “Super-Glenn” procedure. Partly because it’s only now that more and more kids are making it through interstage and partly because the need for more pulmonary pathways is being considered case by case, hospital by hospital. Maybe sometime soon a study will be created so that kids like Liam wi...

As I write this post, our boy is 8 days post-Glenn and in the OR getting a BT shunt that will hopefully provide his lungs a new pathway for oxygen-poor blood to soak up and send out oxygen-rich blood to the rest of his body.  If you had asked me before the 27th of September where we would be 8 days out from the Bi-Directional Glenn, I would have said, “hopefully looking towards a discharge and home.” That was before we learned that Liam was a risky candidate for the Glenn and, today, I wonder if such a luminous path remains possible.  The surgeons hope that they can keep the Glenn physiology in this surgery. It is possible they will have to undo all their work from last Thursday- it all hinges on whether this shunt will be what Liam’s lungs need.  We have been hoping each day for better outcomes and each day we are gut-punched with disappointing news. We hope all he needs is a shunt- that it would be Liam’s golden ticket, that it would be so easy and he could come back...