Luke received another six-month pass and high five from his cardiologist yesterday. I kind of can't believe it (oh ye of little faith!) but am so thankful that Luke's heart function continues to be so good. His squeeze is as good as last May and the blood flow through his coarctation is "turbulent" but not concerning at this point.
Luke's oxygen saturations were 84-86%. This is the number that will most indicate when it's time for surgery. This number has been the same for five years. It blows me away that his sats have stayed in the mid-80's for so long. For many kids with a single ventricle, this number starts to decline as they get bigger and taller and the heart has to work harder to pump blood further away from the heart. It makes me wonder if Luke's gradual growth over the years, and being on the smaller side has helped maintain his sats. Luke has never had a giant growth spurt. His motto is slow and steady.
Whatever the reason, our new doctor feels very comfortable with those numbers and not moving forward with the Fontan yet. He does believe, as did Dr. S., that his sats will start to drop at some point and we will notice more fatigue in Luke. Then it will be time for surgery. What no one will say, however, is when that will be. I think for both Dr. Kim and Dr. S., this is new territory. Luke is their oldest patient yet to have this third-stage surgery.
I joked with Nurse Melissa that appointments at five years sure are a different experience than appointments at two years.
Dr. Kim did share with us that one of his patients pre-Fontan developed pulmonary fistulas, which caused his sats to drop and his Fontan to be quickly scheduled. This isn't a super common occurrence, but something to keep an eye out for as we wait. The only other downside of waiting, is the theory (theory!) that lower-than-normal oxygen levels can affect learning development. We haven't seen a single sign of that in Luke, but something that we need to weigh during this process.
I'm trying hard to look at our situation as a process God is walking us through. When you first hear "He'll need three surgeries ...", it's hard not to look at the Fontan as the finish line. But whenever Luke's Fontan is, he will continue to need care and intervention and medicine. He's never going to be "done" or "fixed", but God willing, he will be strong going in to the Fontan, and stronger coming out.
Luke was stellar during the appointment, so naturally, here's where we took our future "Lego Artist"
Thank you, everyone, for your thoughts and prayers. We continue to covet them and treasure them.