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.
Thursday, July 30, 2009
Boring is Good. Therefore...
I'm getting double vision doing this task at work and I feel this vibration through my keyboard. Looking over my post-its pile, I see my cell blinking and shimmeying across my desk. Bother. I see Jose's number and sigh as I take off my headphones.
"What." I say flatly. It's just past 4. I told him it'd be between four and five, closer to five. "Yes. What is it?"
"What are you doing?" He asks.
"I'm winding down."
"When are you coming home?"
"Shortly. I said between 4 and 5."
"Well, Bo's line has a hole in it."
Shit. Can't think. Can't hear anything. Lights get brighter. Must be my eyes dilating. "I'm shutting down my machine. I'll be there shortly."
"Should we meet you at the ER or go to Leinwand's?" he asks as I'm googling Bronson Leinwand thinking, I can see myself handling his card and putting it down by the card catalog right by the door, even just last night. Why didn't I slip it into my handbag instead? Why? Was I feeling overly confident? Smug even?
"I'm calling them right now. I'll let you know what they decide." As I hang up, I shoot an email to my group, vaguely urgent, but no "!" or flag, poor punctuation, probably incoherent. Command the machine to shut down, and wait on hold for the surgeon to tell us where he will see us. I feel my eyes stinging. Where did those fucking tears come from. Come on, give me a break. It's close enough to the end of the day, why am I getting that look? Who cares. Get to the car. Get a file in case I need stuff to do. Movemovemove. Shit, forgot all those printouts for working at home...
The minute I step in the door, I get a wall of words. Why is she talking in Aramaic. Why aren't they in the car and turned around in the drive?
We bring our own sterile-packaged repair kit. Bo gets a dose of oral sedative (Versed). He gets loopy and plays with Tom Trains in the playroom on the peds floor as we wait for the surgeon to come back. No one wants him screaming the way he did last time. I explain that his broviac is broken and Dr. Downing is going to fix it.
"Dah Doew-nee."
"That's right, Dr. Downing."
We get home in time for some Thomas & Friends and a decent bedtime.
So... it goes.
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2 comments:
i wish my heart was big enough to reach all the way from hawaii to michigan. i wish i could carry you in it and create a miracle. and i am so amazed at you, and j. and bo. p.s. thomas the train rules.
woah.... taking a moment to pray in my own way...
love you all so very much!
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