Monday, February 9, 2009

Bring on the fish oil...

2.0 and 2.2. Those are the results of Blaise's last two lab tests for bilirubin levels, which puts her over the threshold for "compassionate care" administration of Omegaven. Erin & I signed the consent form today, spoke with Dr. Puder a bit more about the treatment, and now we wait.

Actually, we don't wait very long at all for Blaise to get Omegaven. It'll be substituted in to her PN in place of the old lipids tomorrow. It turns out that Children's doesn't need to get FDA approval for every child they want to give it to (like we originally thought). Everything's all ready to go right away since the Omegaven study is happening at Children's and they have clearance from the Children's Internal Review Board (or of the few acronyms we were familiar with before all this began).

So what are we waiting for? Well, we have to wait for her to get better. The typical pattern the group at Children's has observed to date is that after Omegaven's administered, bilirubin levels get worse before they get better. We're not talking catastrophically bad, but there's a definite spike after treatment's initiated, followed by a steady reduction. They all know it's going to happen, we know it's going to happen, but I'd be lying if I told you I wasn't scared. Turns out you can look at a graph and measure the error bars to your heart's content and it doesn't make you feel any better about your kid's liver not working the way it should.

There's a psychological phenomenon called pareidolia. It refers to people's tendency to see meaningful patterns in stimuli that are actually completely random. It's the word we've picked to describe what's happening when you see a face in the clouds, or feel like you hear a voice in radio static. Pretty pervasive, and pretty much impossible to shake even when you know you're probably fooling yourself into believing something's there. I bring this up because I wish I knew how to get rid of it. When you know you're daughter's probably going to start looking jaundiced soon, your ability to see yellow suddenly skyrockets. I know the lab numbers mean more than her skin color...babies with a different complexion can look completely normal even when they're bilirubin level is through the roof. Still, it's spooky to feel like she looks different. I'm constantly looking at the whites of her eyes to see if I feel like they've changed, and I keep checking my own hand and arm to see if her skin really looks that much different than mine. To be honest, I don't think I can tell brain's sick of trying to process skin color at this fine of a grain so I suspect it's given up.

Of course, Blaise isn't worried in the slightest. She's mostly working on fine-tuning her ability to detect exactly when we've begun to think about getting some coffee so she can wake up and fuss. In other news, she officially went of her last monitor today! No more pesky pulse/ox light around her foot...of course this means her toe will no longer glow with an unearthly red light. It was kinda cool through the blanket. She looked a bit like E.T. They'll still do the occasional spot-check to make sure she's doing alright, but her blood-oxygen levels have been at 99% or 100% for ages now. So one less line, which means it's even easier now to scoop her up and dance around for a bit. Progress rocks.

1 comment:

Dan said...

"Progress rocks." Indeed, and so does the thought of you picking her up and dancing around.