Decompression

A few months ago I was picking through Bill Bryson's "A Brief History of Nearly Everything."  He devotes an entire section to the history of diving.  More specifically, Bryson recounts the horrors associated with early diving suits and techniques.  I will spare you the gory details, but it makes me truly appreciate the non-invasive sport of snorkeling.  Why do I mention this book?  The imagery of those early exploits into the deep sea visited me this morning.  My family has been hunting for proverbial ocean floor sponges with Captain Nemo.  And Nemo was made us return to the surface too quickly.

We have got the bends- all three of us.  Lacking the gradual transition from 24-hour medical assistance to complete independence has sent our world into a tizzy.  The "Nurse" call button is out of reach.  No one can race in for a quick rescue.  I can't get an immediate second opinion.  These are lonely times.  Though the hospital's staff did a great job of teaching these shaky parents on how to change the surgical dressings, proper lifting and washing techniques, necessary medicines and their application schedules; mom and dad are feeling overwhelmed.  And baby is not quite ready for his old routine. 

If there was a hyperbolic chamber available, I'd chuck us all in.  For we have all the symptoms of improper decompression; we've got the bends.  We came to the surface too quickly; we were jettisoned back to reality before our comfort levels had returned.  Miles is slowly readjusting to home life and our previous schedule.  Jesse and I are drowning in the stress that our new responsibilities bring.    

The moment we signed those release papers, indicating we fully understood our after hospitalization care routines, UVa quickly cut the ties.  Sure, we have phone numbers to call, e-mail addresses to pepper with questions, but an actual staff member is now over 90 minutes away.  We are solely responsible for Miles and his mending heart.  Looks like I fooled myself again.  In my little dream land, our return home was supposed to be smooth and cushy, biscuits and honey butter- not full of fears, tears, and worries.  

The fears: mostly by the neck infection.  I watch it as if the site were a wild fire in California and the incision is Los Angeles.  We are constantly fighting back the flames to protect Grauman's Chinese Theatre, Randy's Donuts, the Watts Towers, and Chateau Marmont.  (Landmarks that would be forever missed; though "the Hills" could disappear.)  If the infection does spread, we are in serious trouble.  Back to the hospital we must race- his bones and heart are then in jeopardy.  We fight this threat three times a day with putrid smelling antibiotic serum and antibiotic powder.  

The tears: Miles has a personal China Syndrome the moment the serum's odor wafts in his direction, and each dose is rather large.  He wails; he gags; he writhes- all for the sake of good health.  Our saving grace is the neck powder.  Its application allows me to pretend that my little boy is a big plate of spaghetti, and I am generously applying Parmesan cheese to this tasty dish.  A little bit on the weird side, but it helps compensate for the earlier meltdown. 

The worries: Being a normal parent is stressful enough.  Having to care for a child in a delicate position is beyond the major leagues; it's like moving the World Series to Mars- and the home team's pitcher has eight arms.  Luckily I found a great group through facebook, a group that is dedicated to parents of children with congenital heart diseases.  These parents have posted many pictures of their little ones- while in the hospital and a few months after recovery.  As Jesse and I looked at the hospital pics, we could name all the different tubes and wires.  Been there; done that.  Thank God these parents also posted follow-up pictures, images of their children thriving only after a few months.  Truly amazing!

In retrospect, I wish I had snapped a few photos of Miles in the PICU.  One day he will ask us about his surgery, and my shaky memory will be our only record.  Superstition kept my camera lens on; I didn't want the last pictures of my son to be of him in a critical state.  But rumor has it that a granddad snuck a few camera phone pictures.  An investigation is to be launched!  I hope he did capture the moment, our moment before the bends kicked in.