Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Friday, December 18, 2009
Bringing out My Best Me
Hawaii is sunny and warm. The days are full of crisp contrast between objects and blue sky. This surreal sense of optimism-made-flesh seemed to have a somnomulent effect on me. It was just a dreamstate. A week-long dream. The hospital on the otherhand is a manmade environment of highflow HEPA air, drying and cold. Staff working on 12-hour shifts and artificial lights. I am at a heightened level of awareness. Those monthly infusions remind me of the dread at being admitted urgently or emergently for unidentified distress. I am grumpy, but alert. Thankfully for all of us the 2-hour infusion never went past the 5 hour mark. I was not happy, but happy enough to be going home the same day.
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