Tomorrow, Namine has a cardiology appointment. Under normal circumstances – for us, that means a routine visit which doesn’t take too long – I’d let Jessica take Namine by herself. But we’re getting closer to Namine needing the Fontan, the third heart surgery. So I plan on taking the afternoon off tomorrow, just in case the cardiologists want to start talking about the surgery.
From a strictly non-medically-educated parent’s viewpoint, I think Namine is doing well. There is one thing that Namine’s cardio doc told us to watch carefully: oxygen saturation.
As a Glenn patient, Namine is technically allowed to go as low as 75% O2, but she’s different than most patients. Because of the caudal regression, her heart doesn’t have to work as hard to pump oxygenated blood to her body; as a direct result of this, she has higher O2 than normy Glenn patients. Namine usually sats at 88-92; we know that it dips when she’s sick, but anything lower than 85, we’d either put her on O2 or take her in to the ER.
When Namine starts to dip, her lips will start to take on a bluish hue. That will be a key indication that it’s close to Fontan time. So far, Namine has not started to get blue. But I’m also sure that there is more that her doctors will look at, and we’ll find out more tomorrow. I’ll keep you posted.