Hope in a 16 year old "bottle"

"I could be bounded in a nutshell, and count myself king of infinite space, were it not that I have bad dreams."

-Hamlet, scene i

I started this thread yesterday.  I wrote a significant amount, looked it over, and felt a certain dread that I was temping karma by sullying the names of our new doctors and nurses.  My tone was negative and my attitude was less than pleasant.  I was not actually angry at the targeted staff; I was angry because yesterday was long and hectic.  Heaven forbid I write something regrettable about any team member who will be working to save my son's life.  My words were frustrated and hopeless.  And for the first time, I actually felt worse at the end of my rant than when I started writing.  So I deleted everything; today I am being more rational in my observations, that is until you reach my diatribe about bees.

Our first venture to the University Hospital initially felt like it was more effort than it was worth.  Nothing compares to hearing a registration attendant say, "Are you sure that doctor works here?  I've never heard of him."  Hooray, so our surgeon must be some wandering vagabond who plans on popping into the OR for a quick can of pork 'n' beans and a new blue bandanna for his mutt Scrappy. Turns out he is the real-deal, the head of pediatric heart surgery, and not the hungry drifter I originally cast him as.  Three different offices and five receptionists later, we finally met him.  We were human ping pong balls- paddled from pediatrics to primary care to pulmonary and vascular health, simply because nobody bothered to do a little detective work.  Each receptionist was certain we were due at her suggested location, and that the previous receptionist was completely wrong.  Sadly, their crystal balls were clouded, and their attentions were commanded by whomever they were texting.  Finally, a kindly cardiology nurse saw our frustration and took over.  She make a few phone calls and had the surgeon come to us.  After all of our huffing and puffing, it was nice not to have to return to the building we just left.  We should have given this nurse a five dollar tip!  

After racing around multiple floors, in two separate buildings, our introduction with the surgeon was anti-climatic.  I felt like we should have found the Ark of the Covenant, or at least a crystal skull.  Instead, we met a middle-age guy who said he was "just trying to make it through the day."  And adding salt to my fake wound, this doctor seemed unimpressed at our situation, rather ho-hum about the procedure, which he says falls in the mild to moderate range of difficulty.  So why am I complaining?  Wouldn't it be ideal to hear that Miles' procedure will be simple, with manageable and acceptable risks?  I felt foolish for holding out for sympathy.  Surgeons don't get the big bucks to cuddle, at least not on the job.  After wrestling on whether or not I liked this guy's vibe, Jesse helped me permanently drop the matter.  He pointed out that the doctor presented himself in a confident and professional manner; he was neither Patch Adams nor was he Leather Face.  Point taken.  Score one for the husband who helped center his high-strung wife. 

Last night sleep kept its abeyance.  Knowing that we had to wake up in five hours did nothing to encourage relaxation.  Miles finally conked out around 11:30 p.m.  Keeping him up a bit later was the plan for he was undergoing an MRI with general anesthesia at 7 a.m.  He couldn't have any food after midnight.  (Amazing that baby formula counts as real food.)  What a frightening prospect, to deny a hungry baby a bottle, but he did great.  Actually, he earned an A+ for hanging out peacefully until 8:30 this morning, on an empty stomach and reduced sleep.  Miles still had plenty of energy to flirt with the nurses and charm the new cardiologist.  I was less perkier than our boy wonder because the MRI unit was running over an hour and  a half behind schedule.  You better believe they saw my best finger drumming and foot tapping.  That additional 90 minutes felt like sitting through a Russian art film; my butt was numb and my mood soured.  I was so thankful that we had no infant hunger hysterics to deal with, though Jesse did get a little fussy without coffee.

But back to last night- while Miles was in a deep slumber, and my heart was picking up speed with each new scary thought that flickered in my head.  I laid in bed, staring at the street lights, the darkened houses, the cloudless sky, and felt utterly alone.  I whispered to Jesse, "I don't know what to do.  I don't know what to feel."  Luckily, he had fallen asleep.  My lack of an audience reduced my dramatics.  What exactly was I obsessing over?  Thoughts of incisions and potential infections, IVs and wires, bright lights and loud alarms.  I feel a bit like Hamlet.  These fruitless, though unavoidable waking nightmares, keep clouding my perspective.  When I look into the future, all I can see are glaring and garish question marks.  No answers.  But unlike Hamlet, I don't think optimism (or better dreams) would lift the claustrophobia that the hospital elicits in me.  We are trapped until further notice; held hostage by a clueless clerical staff.  And our current location is a hectic one.  This particular medical center is like an over-populated bee hive.  All the swirling around does nothing to soothe my nerves.  Worker bees in bright blue scrubs continually dive bomb unsuspecting and lost patients.  Clusters of drones congregate in front of the elevators and reception desks, making it known that this is their territory- buzz off!  The infrastructure is like a never-ending hive, comb after comb.  Is there a Queen Bee I can appeal to for help?  Or is she too busy dictating the flight plans of her minions to help some simple out-of-towners? 

Once I stopped envisioning the hospital as a training ground for evil bees, I was able to fall asleep.  There was one positive event from yesterday.  Our trip eventually yielded some comfort, though not provided by any doctor or nurse.  The surgeon's nurse practitioner, who was friendly, responsive, and eager to provide unwanted surgical details, introduced us to a young man who had a similar procedure done to his heart 14 years ago.  Kevin, now 16 and full of that skater boy swagger, obligingly showed us his chest scar.  Amazingly, it was barely visible under the florescent lights of the examination room.  The scar had changed into a pearly streak, a tiny souvenir from a massive operation.  Kevin's parents, also in the room, said they remembered what it was like "to be in our shoes."  His mother said that Kevin's heart surgery was the scariest thing she has ever experienced.  She genuinely wished us luck, which I greatly accepted.  Granted, Kevin's condition is different and more complex than Miles' case, but he still made it through the surgery in flying colors.  And this was over a decade ago.  I started thinking of how far medical technology has come since then.  Putting that realization together placed me back in the thankful category, where I long to be.  Meeting this young man gave me more reassurance than I have felt in two months.  Thank you Kevin.