Sunday, December 1, 2013

Happy Extubation Day...

This weekend we have had a full house. Full of family.  Full of laughter.  Full of love.  We've been going non-stop. 

But, tonight before the day gets away from us...I'll stop and say, Happy Extubation Day!!!  

I've written about the day many times.  We've told the story a few times this week.  It was the day we stopped and realized we are dealing with something miraculous, and knew we had an extraordinary boy.  

We went from a month of failed attempts of getting Max off of the ventilator to breathe.  We spent Thanksgiving in the hospital.  And made the heavy decision to trach him.  

November hospital

And while a trach in itself was not a death sentence, it certainly felt like it at the time.  The social worker told us he was going to have to stay in the hospital until we could get nursing or a home vent, and that could take up to 6 months, because of our insurance at the time.  Max didn't have supplementary medicaid,  and our insurance wouldn't pay for a home vent.   That morning when the PICU staff turned over and he coughed the intubation tube out, the stars aligned...the heavens parted...and it was as if he was given a second chance on life.  I know that can sound dramatic, and I guess it's hard to explain it without sounding over the top.  It was a terrible month of terrible decisions, and at the end we felt terribly defeated.  But, he lived.  He fought.  And he's still here today and has never met that vent again because he can't breathe.  

That morning after he coughed the tube out, I held him.  I held him without the tubes, and the vent.  I held him until I couldn't feel my arms or legs.  He fell asleep in my arms and the nurses would come in and hold a cup with a straw up to my mouth to take a drink.  They would rearrange pillows to support my arms.  His doctors and nurses would creep into his room and see the wonder.  There were few dry eyes and lots of smiles. 


He was just a little bean, and he coughed a big breathing tube out.  
We've lost the tube along the years...10 years is a long time to hold on to a tube.  Maybe we'll find it again.  I'm glad I took this photo some years ago.  
Extubation day

Today we took a little hike with our visiting family to see the mountains.  It was a gorgeous day...albeit a very windy.  He stopped me in my tracks...this wonder boy.  Breathing deep...roaring at the mighty wind.  

photo (17)


Elizabeth said...

Beautiful post -- beautiful boy.

Anonymous said...

Yes, a very Wonderful Post...Have not been with you through the full journey, but from what I have read and seen, since having found you, it has been remarkable!
Love you all and keeping you in my prayers!! God Bless....