Lucas Camilo

On November 18, two years ago, we brought Lucas home  from the NICU.  It was a day filled with so many complicated emotions.  We were simultaneously joyous about bringing Lucas home from the NICU, while also hiding our sadness at “graduating” from the NICU without knowing why Lucas couldn’t breathe or move like other kids (Lucas didn’t have a diagnosis until 3 months later).

Nov. 18, 2009 - the day Lucas came home

There was the amazing anticipation of getting home and finally just being the three of us, which we reveled in for about 10 minutes before the new, bossy professionals in our lives busted into our house and started telling us what to do (one condescending nurse supervisor in particular).

And then the moments that only seem funny two years later.  At one point the nurse supervisor told the respiratory therapist not to show us how to turn off the incessant beeping on Lucas’s pulseox monitor.  For a moment our guts sank as we imagined our home sounding like an ER for the rest of our lives.  And then our friend the respiratory therapist proceeded with his orientation to our home equipment, including showing us exactly how to turn the beeping volume up and down or completely off.  And then they all left, and we were happy.  And then the machine started beeping because Lucas’s oxygen level was dropping, and we were terrified.  And then we suctioned and used the resuscitation bag ourselves, proudly, for the first time without medical professionals standing next to us.  And we were happy to be home alone.  And then an overnight nurse showed up and we were both relieved and sad at the loss of privacy – perhaps for many years to come.

November 2011 - enjoying a fall tree swing

Two years later that all feels SOOOO long ago.  Nurse supervisors no longer have any power to scare us — we know that we can get any information we need, or doctors orders for the things we know are best for Lucas.  And Lucas’s health is so much better.  The regular adrenaline-rush episodes of blaring alarms and Lucas’s graying lips are extremely rare these days.  And we’ve gotten to know Lucas’s nurses so well that we are mostly just grateful for their loving care.

And finally, maybe most significantly, Lucas can now tell us what he wants and needs and doesn’t want.  And he revels in the power and does it ALL the time.  There are still moments when he’s so mad/upset that we’re left guessing (are you mad that I’m slow at retrieving you the turtle toy, or are you having trouble breathing?)  But usually our days are filled with conversation about animals, bird songs, bananas….  For example, overheard yesterday:

Lucas: BahnEEna, nahnEEna, nahnEEna (and banana sign)

Krista: We don’t have any banana, honey.  Do you want to chew on a piece of apple?

Lucas: (getting louder) BahnEEna, nahnEEna, bahnEEna

Krista: I’m sorry, we don’t have any banana.  You ate it all earlier this morning.  Do you want an apple or a pear?

Lucas: BahnEEna, nahnEEna, bahnEEna, nahhhhhneeeeeeeeennnnaa (frantic banana sign)

Krista: Lucas, I’m sorry. There’s no more banana.  I’ll get you an apple.

Lucas pauses.  And then, recalling that we keep overripe bananas in the freezer, slowly makes the signs for “cold” and “banana.”

And Lucas says: old BahnEEna, old nahnEEna, old nahnEEna….

(note: the “c” sound is still a tough one for Lucas, and he can only do “b” when he works really hard)

Two years after bringing home our medically fragile child from the hospital, we crack up at our little genius.  What other barely two year old is outsmarting his parents AND putting together multiple words in English and ASL, both of which are physically challenging for him?  Needless to say, Lucas gets all the bananas he wants.