Sunday, September 19, 2010

Jameson has certifiably developed some momentum. His labs show his kidney function is still improving. His creatinine fell a little to 0.8, and his BUN came down to 42. He lost about a pound of fluid weight (now below 13 kg - we're shooting for ~12kg) so diuresis was scaled back a bit, and, of course, he's still making plenty of beautiful urine. He had a tidal volume of ~35ml this morning and steadily improved all day following a bronchoscopy that successfully removed goobers dwarfing even those accumulating on the upper lip of PC on a cold January morning. The last time I looked I lost my breath - 117ml at a maintenance ventilator setting while on ECMO!! He's opening more of his airways and actually exchanging more gases. I suspect we won't be off ECMO anytime in the immediate future, but hopefully it's on the horizon now. The little-big news we're waiting on will be coming out of the Mayo Clinic's laboratory. We were hoping for his Sirolimus (aka experimental silver bullet chemo drug of sorts) blood level to assess if he's in the target band for effectiveness. I'm hoping he's sub-therapeutic and his body is re-establishing the equilibrium it had prior to surgery with his disease, and the drug will only enhance his ability to control it (or a low drug concentration is effective without a host of adverse side effects). Either way I'd be tickled. The Heme-Onc doc this morning said she'd just be happy to know the drug is working so he can rely on it whenever he has a flare up. He also got a Roc-holiday (paralytic reprieve) for a good 6+ hours, so I got to see him respond to my voice and hard not to pick him up despite the 23 lines emerging from his body. I like to think he was catching his breath all day so that if the time came when he wasn't so paralyzed he could thank the nurses for their efforts and me for promising not to subject him to his mother's Enya today.
It was a good day, no a great day, and despite still being deep in the forest it seems slivers of light are finding their way through the dense stands.

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