February 19, 2013


As it turns out, a little thing happened between our clinic visit and Dr. Cowboy's request for the CAT scans.

Her name is Veronica.

Yeah, as if three rambunctious kids, a too big dog and a husband wasn't enough insanity, I was now pregnant.  Pregnant and careening towards 40.  Holy shit.   And the pregnancy was horrible in case you wanna know.  I was in and out of the hospital, on and off bedrest, and not at all sure that Little V as she has come to be called would make it.  But she did.  And she was/is perfect in every which way.  She would arrive some two months early, about the same time as her two oldest siblings would have their CAT scans and she would live her first month and a half in the NICU right up until those CAT scan results would come back.  There was so much going on for us as a family that I don't remember much only that it was chaotic as all get out, we were separated with me staying in Cordoba with Little V and Joe trying to manage the rest back in the pueblo and I had missed my very first clinic visit in four years.

I was busy feeling sorry for myself, alone in my hospital room when Joe called. 
"They've got nothing.  Nothing.  He's shocked."

"Who?  What?   Huh?  What are you talking about?"  I was annoyed.  Why wasn't he visiting with the kids more often?  And I needed food, real food.  By real food of course I meant chocolate.  The hospital had  fast become a prison and I was losing it.

"Cowboy has the results.  The CAT scan came back clean..."

I heard nothing after that.  Nothing but me trying to catch short, gasping breaths between sobs. 

Soon after that phone call Little V and I were parolled released.  We went back home to the pueblo, I reassembled/disinfected the home that had housed the pack of wolves for the past two months and I waited anxiously for the next clinic visit, my chance to hear it from Cowboy himself.  In the meantime, we enjoyed a new treatment protocol:  nothing.

Upon reading the CAT scan results, Cowboy threw down the emergency brake on our crazy train.  If the kids were getting a hardcore daily dose of physical activity (running, biking, swimming...) he would count that as physiotherapy and we could eliminate our twice daily vest sessions so long as there were no respiratory issues going on.  If the kids had a cold or anything that sounded even remotely junky, we'd have our choice of throwing in a session with the vest or using a handheld device (Acapella or Flutter).  Once the weather took a turn towards winter (I still snicker when I say that here) and the kids were less active, we would do one treatment session a day (vest or handheld device) until spring showed up.  The Albuterol that the kids had been inhaling with every vest session was axed.  No more daily inhaled meds.  We would monitor this new action plan visit by visit and he made clear that he would reserve the right to amend it should  future lab results warrant it.   And so our dance with the devil had begun.

When clinic finally rolled around again, I was all over it.  This would be the day that I would finally get to sit face to face with Cowboy and get it straight from the source.  It had been fine to hear the instant replay from Joe but I needed to hear it from Cowboy for it to be real.  Just what had he seen on those CAT scan results?  What was he thinking?

He sat perhaps a little too comfortably in the rolling desk chair.  With a cock of his head and swivel of his hips, he leaned in.  "Que no hay nada.  Nada."  And just what was that supposed to mean?  How could there be nothing?  He pulled out up the results from the CAT scan and read off a laundry lists of No's.  

No bronchiecstasis.
No mucuous build up.
No sinus polyups.
No sinus drainage.
No ghosting.
No scarring.
No inflamation.
No-no-no-no-no.  There was just, just...nothing. 

He went on to tell me that the image that he had studied was not one of a cystic fibrosis patient.  Unsatisfied, I pushed him a little further.  "How can you say that?  What about the genetic side of all this?  The one that has told us that they have cystic fibrosis."

"I'm not saying that they don't have the genetics for the disease because they do.  What I'm saying is that for whatever the reason, they are completely asymptomatic.  It is quite possible that one of your husband's less common genes is acting as a corrector and functioning enough to get the job done. Take your son's case.  How old is he?  Six?  By this age we should expect to see something to link him to the disease; something beyond his genetic profile yet there is nothing."

It was overwhelming.  I couldn't speak.  And then the exclamation point,

"If it weren't for the genetic side of all of this, I would never believe that either one of your children had cystic fibrosis."

And that's how we left it. 

We still go to clinic every three months.  The kids still get swabbed, cultured and pricked.  Levels are checked, cultures are run and we're more than aware that things could change down the road.  The main difference is that we have cut back on vest treatments to nothing in the good weather months when they're swimming and running their brains out to once a day in the off season.  Our plan is to purchase two Flutter devices so we can retire the vest at least for the time being.  While this turn of events has been nothing short of miraculous, I'd be lying if I told you that I've fully embraced it.  I worry a lot about the what-ifs, not just because I'm a mom but because that's how I've always been.  I want to enjoy every second of this reprieve but I don't want to be sailing down the river of denial either.  It's a fine line and I'm confused about which side of it to anchor into.  Who knows?  I'm beginning to think I'll be forever adrift between the two.  And that's okay, right?

At least for now, in light of it all, I'll try sleeping with one eye open instead of two.

1 comment:

  1. Wow! Wow!! Wow!!! I say enjoy the respite for however long it lasts. As long as they are being monitored every three months you can get on top of things if you think they need to go back on treatments :-)