While we were there Dr Cardis took some time to talk to us about some information he recently got at a conference with some adult congenital heart defect cardiologists (a NEW specialty, considering people with major heart defects only recently began making it to adulthood thanks to new medical procedures). He was speaking with the Emory Clinic's Adult congenital heart defect specialist about Sam specifically. He said this specialist advised him to wait as long as possible, regardless of time of year or exhaustion levels, to have Sam's Fontan. Although all the reasons are unclear, there are many negative effects after the Fontan. Heart attacks, strokes, liver failure, and protein losing enteropathy (which is almost always fatal withing 5 years of diagnosis) are the worst, but others exist. This specialist feels it is better for these kids to be blue (meaning have a super low blood oxygen count) and miss out of physical activity than to have the Fontan and put themselves at risk for the side effects any earlier than necessary. The Fontan is NECESSARY...Sam won't live without it. But he wants to buy as much time without these side effects as possible.
So now the game plan is sit...and wait...and just take it a day at a time. If possible, we will continue to put Sam's next surgery off indefinitely. I'm torn. It is physically painful to see Sam exhaust so quickly. And we are supposed to just let that go as long as we can?!? But then again, if we jumped into the Fontan early and then he had one of the major side effects, I don't think I could live with myself.
Two sad stories of Sam's capacity for physical activity from this week: I arrived at Sam's daycare to find the whole class running laps around the play ground. Except I didn't see Sam. When I walked up I realized Sam was sitting by himself in the sand, exhausted. I asked the teacher why they were running laps and she said the kids wanted to race. I was pissed that 1) she didn't recognize Sam might be having problems keeping up and might need to be checked on and 2) that Sam was just allowed to sit all alone while everyone continued to play. I spoke with the director and told her Sam doesn't need to be ELIMINATED from physical activity, but when it is clear he is struggling, they need to find a way to creatively keep him engaged. In this scenario, would it have really been so hard to say to Sam why don't you come help me pick the winner of the race, instead of letting him sit breathless in the sand alone?? And then this afternoon, Sam and 4 of our neighbors' kids were jumping on a trampoline in our neighbor's yard. After about 60 seconds I saw Sam sit down on the trampoline and start to cough. Chris ran over and pulled him off the trampoline but he couldn't catch his breath and kept coughing until he threw up. He started to cry and said he really needed to rest. Broke me. And it's so hard to explain to people while he is out of breath or coughing or just beat after just a few minutes of play.
On the flip side, we attended a fall festival for the Kids at Heart group, a support group for kids like Sam, at a farm in McDonough. He walked a lot, and never once told us he was tired or looked overly out of breath.
Bottom line is we can't compare him to other kids. When we compare him to other kids, he will never ever compare favorably. He will always look sickly and incapable. But when we compare him to him...his physical capacity for activity today vs last month vs the month before...not much has changed. And THAT is how we need to decide when this surgery will be necessary. And I'm fine with that. But it is indescribably painful to have to watch your child, who looks and talks and acts like every other kid, NOT get to be a normal kid. And it's so painful to see in his face that he doesn't understand why.
We have a busy weekend coming up...work for both Chris and I, a trip to a Greek Festival, and a trip to the fair. Hopefully lots of fun and lots of good pictures to come. Here are a few from the Fall Festival. I can't tell you how much I appreciate the Kids at Heart group. We have met several families while children Sam's age with similar defects, and I hope they will learn to lean on each other as they get older and be able to find belonging in this special and rare medical-life journey they share.
