t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.

12.19.2011

The Best Christmas Gift: A Lung Function Test

It's easy to lose sight of the best gifts.  

Sometimes I forget 3 of my beautiful 4 children are running around happy and glowing, as persistent bacterias slowly eat away at their lungs.

I forget to talk louder and even sometimes to clean out their ears.

I think the drainage stops, only to find their ears are blocked solid with hardened fluid.

I let Emmett skip his vest because it hurts his tummy.  Ellery gets days off on her vest on Sunday and Saturday.

I forget how little I know of what the future holds.

It's hard to go back and remember what I've shelved from that painful winter last year.

I guess it can be okay to bring everything back again and remind me of things even more important than practicing the piano and cooking without refined sugar and processed, gunk filled foods.

Waking Up Again

The day before Thanksgiving the children had appointments with their pulmonologist at Primary Children's Hospital in SLC.  We were happy and confident that the changes we implemented the last 6 months would show remarkable improvement in the children.  Everyone seemed relatively healthy.  Gymnastics and flute were building lung strength and capacity...

The doctor nodded along smiling, as we explained how well everyone was doing.  Yes we have had 3 courses of antibiotics in 3 months for those nasty exacerbations that just don't seem to go away, but...

Then came the PFT's (pulmonary function tests).  We were in a hurry to get out of the office and back to Mimi's for Cousin's Camp, so I pushed to nurses and respiratory therapists to hurry.  I took note of the all the red on Ellery's PFT's.  I knew it wasn't looking good.  I wasn't prepared for the phone call from the doctor 30 minutes later.

Ellery's lung function had dropped 35% in her large airways and over 70% in her small airways.  This was precipitous and unacceptable.  She would need to start a vigorous course of antibiotics, increased airway clearance therapy to 14x per week, and a new nebulized medication.  In 2 weeks if her PFT's were not at baseline, we could expect to be in the hospital for IV antibiotics.  You can't drop 35% too many times before you get to zero.

The Interim

You can probably imagine what the ensuing 2 -1/2 weeks held.  Raw emotions in large doses.  We tried to shield Ellery from this information, but one night she happened to be sitting just out of sight at the top of the stairs while Brent and I were expressing our fears.  With Ellery in on the news, our anxiety just kept growing.  Often times I would find her just crying.  Scared.  I think eventually we helped allay most of her fears and even got her a little peaked about the attention and excitement we would provide with a Christmas hospital stay...  We put on a lot of brave faces.

It was easy to think...no way.  This isn't real.  She is fine.  I was ready to fight the doctors.  But then...what if I am wrong.  We waited.  We all ate cloves of crushed garlic.  Missing vest treatments was no longer an option.

The Best Gift

And then came the best gift.  On December 13th Ellery passed her PFT's with flying colors.  No further permanent lung damage, no psuedomonis, no hospitalizations.

The only thing we wanted for Christmas this year...we got.



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