Blaise has been on Omegaven for almost 2 weeks now and it seems to be going well so far. Her bilirubin levels went up a little bit right after she started (from 2.2 to 2.3, normal is 1) and as of yesterday, they had gone down to 1.8. They might still go up again before they go down for good, but we'll deal with that when it happens. For now, it's at least a sign that her liver isn't getting worse. Hooray for fish oil!
This all makes us remember how lucky we are that Blaise was born in the Children's/Brigham and Women's complex and that she is able to get these treatments right away. Until a few years ago, the prognosis for a child with short bowel was very poor; there was just no way to get kids off parentral nutrition fast enough to prevent liver failure. With Omegaven, kids are able to live long enough on PN for their bowels to adapt and allow for normal (or quasi-normal) eating. Even now, you can find horror stories from parents about how their doctors or hospitals or insurance companies kept them from getting Omegaven. We didn't have to fight with anyone or move across the country to find someone who could help Blaise. Within days of her birth, the people best equipped to help Blaise already knew about us and had stopped by her bed to say hello.
The chances of any child being born with a mid-gut volvulus in the absence of malrotation are extremely small. The chances of that child being born in exactly the right place at exactly the right time are smaller still. I think I'm going to go buy a lottery ticket.
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