Greetings,
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 touch...so 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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