Monday, February 8, 2010 10:22 PM, EST
DAY 42
With tears of denial and faith (although at this point I’m not sure they aren’t the same thing), I plead "he's a fighter." -- Nicole Conn , film-maker of Little Man the documentary.
Turns out last night's episode was worse than we thought or allowed ourselves to believe. MG required near 100% O2 from 3am to 10am. They were ready to promote her to the oscillating ventilator. She was back down to half that by 4PM, but the Dr that is most familiar with her case since birth said this is her pattern to wean and then crash. Since she's approaching 36 weeks and they've tried all the basics, the doctor explained the looming possibility of a tracheostomy and long-term care if MG couldn't handle extubation. Therefore she urged us to consult with the pulmunary specialist at Columbia, so we will transfer MG as soon as they have a spot for her at New York Presbyterian Hospital, either the Columbia (West side) or Cornell (East side) locations.
Blind faith or denial, this really came at us out of the blue. After talking with other parents of kids with Chronic Lung Disease, it does seem that option we fear is looming is much farther down the line and few have had to go there, so for now we will exponentially multiply our prayers and try not to think about it. Faith, denial, Ambien, whatever works.
BW
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