We met with Namine’s cardiologist today. With Namine’s O2 stats being lower since last weekend, our main concern was that the time for the third heart surgery, the Fontan, was drawing near. That’s a train you don’t want to miss.

Before the doctor came in, the nurse hooked up the pulseox to Namine. Her O2 was all over the place: bouncing from as low as 80 to as high as 88. We’re not quite as nervous about her O2 as we were that first time at home when it read 77, but it’s still concerning. Then the doctor came in and we talked. Namine was… antsy. Oh good, the adults are talking. BO-RING.

Namine’s cardiologist explained to us – not condescendingly, even though it was a reiteration for us – that it is expected for any post-Glen (that would be the second heart surgery of three for a double inlet left ventricle heart defect patient, which Namine is) to slowly drop her O2 stats over time. The Glen essentially makes sure that the upper body gets sufficiently oxygenated blood, but it doesn’t do anything for the lower body. As the child grows, their lower body grows along with it, resulting in overall lower O2.

Namine, of course, is the odd child in this scenario. Having caudal regression syndrome, her legs are smaller than the average child’s. So even though the typical post-Glen would need the Fontan around the age of two or three, Namine, who is almost five, has not yet needed it. But even though Namine’s legs are small, they still grow along with the rest of her body. This, then, perfectly explains Namine’s lowered O2 stats: having grown, her body needs more oxygenated blood than her heart can currently provide.

Some time this month – I keep wanting to say “next month,” forgetting that it’s May already – Namine will have an echocardiogram, which will tell us more. (For one thing, if Namine has any collaterals forming.) Pending the results of the echo, however, Namine’s cardiologist believes that she may not need the Fontan for some time. We hope he’s right.

This post is part of the timeline: Heart Repair – an ongoing story on this site. View the timeline for more context on this post.

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