Despite all the fun we had over the weekend with Namine’s first dance recital, we had a scare on Friday. We had just gotten home from the dress rehearsal, and Namine wasn’t feeling well. So we took her pulseox, expecting her O2 to be in the low 80s; we were certainly not prepared for what it was.

Before Namine had the Glen – her second heart surgery – she had trouble keeping her O2 levels above 80. But after the Glen, and ever since until Friday night, she has been in the upper 80s and even the low 90s. For a DILV (double inlet left ventricle) heart patient, especially a post-Glen four years old, that is nearly unheard of. Usually post-Glens need the Fontan – the third heart surgery of three – by the time they’re three years old at the most. But with Namine’s unique physiology, namely the caudal regression, has granted her an extension – longer than the cardiology staff expected.

But now, it seems that time is nearly up. We’ve been checking Namine’s O2 every night since Friday, and it’s never above 82. Most times it hovers around 80, dipping to 79 or 78, sometimes rising to 81 for a little while. On Friday, it was 77; I haven’t felt that nervous since she lost the trach. You can bet that resulted in a call to cardiology.

Our first thought, of course, was it’s her heart. But it also occurred to us that she might be sick; sickness, especially a sinus infection accompanied by congestion, has been known to lower her O2 – but never that much. So we kept an eye on Namine that Friday night, checking her O2 periodically. Then in the morning – early – we took her in to see the pediatrician.

Given the choice between heart issues and a sinus infection or some other crap, we’d gladly take the infection. Infection we can deal with. I did not cope well when Namine was in the operating room back in January of ’09, and I don’t expect I’ll do much better this time around. (Though a boy can always hope – I, we, have been through much since then.) A bad infection would mean she’d miss her dance recital – at least Saturday’s performance, if not Sunday’s – but at that point, I didn’t care much about that. The doctor listened to her heart and lungs, swabbed her for strep (oh yeah, she loved that), but she sounded fine and the quick strep test came back negative. Of course Namine attended both of her recital performances – and we have the pictures to prove it. <3

The next step, then, was to call cardiology back. Namine was already scheduled for an echocardiogram next month, but if things are speeding up, that might not even be soon enough. Namine’s cardiologist has always been impressed by her strength, resiliency, and higher than average O2 stats, but after Jessica explained what has been going on, he made no assumptions that we were blowing things out of proportion. He knows us better than to make that mistake. And he agreed that it appears that the time for the Fontan is drawing close. Namine has an appointment on Friday; hopefully we will know more then.

Husband. Daddy. Programmer. Artist. I'm not an expert, I just play one in real life.