9:31 a.m. Aaron had a fairly quiet night, medically speaking. My teenage wanna-be played most of the night with his toys. He was also sad and crying quite a bit, at least for him. His heart rate is still on the high side, so we’re not on our way yet. He doesn’t act like he’s in pain. In fact, when he cried during the night, we’d suction him and pull out some thicker secretions and he’d calm down. And he plays pretty vigorously with his toys. But it may be that the post-op stress on his body is elevating his heart even though he’s not showing signs of pain. So for now, we’ve added Lortab (similar to Tylenol but with a narcotic component) to the Motrin to see if that helps. He got the Lortab almost an hour ago, and another dose of Motrin 20 minutes ago, but no change yet. He’s still in the upper 160’s instead of down in the lower 100’s. We’ll watch for a couple of hours and reassess.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
Saturday, September 17, 2011
Saturday Morning and a Holding Pattern
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