Sunday, January 27, 2013

New Year's Party.

A new year.  A fresh new start.  And endless possibilities.  Everyone seems to celebrate with a party.

Noisemakers.  Champagne.  Silly hats.  And resolutions.

Little did I know what new possibilities would lie ahead for our family.  And our lives.  Nor did I anticipate THIS party.

December is a busy month loaded with the lovely sounds of Dylan toddling around singing "IS the season to be jo-ree" and Michael humming "Dradle, dradle, dradle, I made you out of clay" from his winter program at school.  I smile every time I hear them strike a chord.  What a blessed season.

Not too far into December, I hear coughing from both boys and place a call to their CF doctor.  I find myself in the middle of an elaborate game of phone tag that all parents of little ones struggle with on a daily basis.  I almost miss the easy days where all I had to do was answer "hello?" for the important calls where I could sit and thoughtfully listen and answer.  Now, I scramble for a ringing phone with screaming kids, a barking dog, and a pot of boiling water.  Or half the time I miss a call for whatever distraction is the topic of the day.  And if I do actually answer a call, I am usually waving off my kids who don't understand that when I am on the phone that there is a real person on the other end...  TALKING.  And I am trying to LISTEN.  Interruptions are common and 'air conversations' often take place simultaneously.  We, mamas, are good multitaskers.

Once I can actually make contact with the boys' pulmonologist and in between Dylan's many loud exclamations "Mommy!  You're never gonna be-weave this...", I wave my finger at him showing "just a minute".  I speak to the doctor in broken fragments.  "Yes, the cough is increasing.  For Michael is worsening.  No, doesn't sound good"  and "Dylan is junky.  Breaking.  Sounds rumbly".  The doctor responds with thoughtful pauses.  I can't tell if he is pausing to process my broken oral notes or to review recent tests for the boys.  I can't be quite sure but I also believe he has a smile on the other end of the line hearing my juggling act.

As he slowly begins a statement, he pauses and then has a mild startle to his voice as he says, "Huh.  [PAUSE]  It looks like Michael's last culture was lost.  Er, wait.  It says here in the notes that the lab cancelled it.  They noted it duplicate."  He pauses then adds, "huh."

Well, that's great.  My brain ticks.  I am agitated.



Gosh, that doesn't help us at all.  WTF?!

The doctor suggests putting them both on a pretty mainstream antibiotic -- one that they both have been on a number of times.  The doctor suggests that this drug would align with his previous cultures prior to the "cancelled" one.  Michael just finished a course of this same medicine about 5 weeks ago.  But I go with it.  In the CF world, antibiotics are a way of life.  Dylan chatters away about his latest creation he is waving in my face.  And while I am generally armed with a million questions for the doctor, sometimes just plain rhetorical, in this case, I am just relieved that he is calling in an antibiotic for their symptoms.  Little did I know what  looming affair was awaiting us.

Christmas blows by us.  We celebrate with our New Jersey family -- friends that we ride a life rollercoaster with...  surviving a hurricane...  our kids battling chronic disorders...  dealing with the unchartered waters of moving a family and living in a new place...  and making memories together to last a lifetime.  One night, we surprise the kiddos with a whirlwind Christmas lights tour we deem "The Minivan Express".  And have a lovely, memorable Christmas dinner at their house a few days later.

The scent of cinnamon still in our house and sweet honey ham leftovers still in the fridge, our family slows down after the flurry of Christmas.  My plans to visit my mother in the hospital in rural West Virginia have been thwarted because of a massive winter storm that hovers directly over my route to see her.  And in the following days other storms blow through on what would've impeded my trip back home to New Jersey.  I am heartbroken not to see her.  But we all realize how paralyzing the wintry weather is for the entire east coast.  So for now I stay put.

With my unexpected stay home, my husband and the boys are almost relieved that I will be along for the trek into NYC for a follow up visit with their GI doctor.  Tummy complaints and tanking growth charts have brought us to this point.

The sky is still inky with a hue of light in the east when we gently wake the boys.  From the moment the boys are awake and groggy, my husband and I hear it.  I cringe downstairs hearing Michael's coughing upstairs as he gets dressed.  A quick pit stop at the bathroom, shoes and coats, we are out the door.  We avoid the topic of food, snacks or even water.  Dylan has to fast and we play it off that it's still night that we will get food when we get to the hospital.  We subtly sip our coffees and stare ahead into the December malaise.

Daylight slowly fades in, while uncovering gray clouds and gloom.  And during the drive, we realize that Michael HASN'T STOPPED COUGHING since we got in the car.  It's airy and constricted sounding.  And CONSTANT.  My husband and I speak low to each other but both agree that Michael does not sound good and that he MUST be recultured and have the GI doctor listen to him.

In between coughing spells, Michael sleepily asks if we have passed the big bridge (the infamous George Washington Bridge) yet.  "No, not yet," we say in unison.  My eyes lock with my husband's and we smile trying to divert our thoughts.  He glances back at the road and for the first time, I am very aware of our mutual worry for Michael.  The massive suspension bridge has become a point of interest along our frequent trips to the CF doctors.   The boys gaze up through the sunroof at the wires and curved steel.  Their little mouths are agape and their eyes wide.  We point out the Hudson river to the boys on either side of the car.  "See the big buildings out Dylan's window?"  I point south and show them.  They make different observations about the buildings and the river below.  Our focus on the normal helps my brain to avoid going on random worrisome mental journies.

My husband and I gulp the rest of our coffee as we finish the ride in the car.  We are in for the long haul with this particular visit since Dylan has many tests ahead before we even meet with the doctor.  We are the only ones in the hospital's imaging waiting room.  Dylan's name is called almost immediately and we are off to an efficient start with his GI x-ray.  Quick and painless.  But then after waiting and waiting, finally we are called in for a lengthy GI ultrasound.

Dylan bravely climbs onto the exam table draped in a white sheet.  The room is very lowly lit.  A lamp sitting on a table across from us casts a warm, gold hue throughout the room.  The ultrasound tech is nice, but quiet and dutiful.  I hold Dylan's hand as he cringes and whimpers.  I try to calm his nerves by explaining it won't hurt and that they are taking pictures of his belly to help his belly aches.  After about two minutes, he starts to relax.  The tech's rolling and clicking on the key board and the gentle hum of the industrial medical ultrasound machine soothes him.  She moves the ultrasound wand across his belly.  The gel squishes as she rolls the wand to the next spot.  I watch as he stares at the ceiling.  I whisper quietly to him and we count the different colored balloon cut-outs that have been put on the ceiling to distract other little kiddies.

Whirr click click.  Whirr tap tap tap.  I see the tech type "Left Kidney".  Whirr click click.  I watch Dylan's eyes blink, his dark eyes very still in between each blink.  Each rep of his blinking shows a heaviness.  I watch him slowly fade to a calm and then fully to sleep.  My heart melts.

He is still and comfortable, even when the tech moves the ultrasound wand.  She squirts more warm gel onto the wand and places it back onto his belly.  Dylan shifts slightly to his side unaffected in his sleep.  Whirr click click.  Tap tap tap.  "Right Kidney".

Times passes.  The tech takes over 60 images of Dylan's entire gut.  I see the tech snap images of his spleen, his gall bladder, his stomach to name just a few.  Dylan is still out even after a thorough review with the radiologist and a few more images.  The session has wrapped and I scoop Dylan up and lift his heft into my arms.  I lean his head on my shoulder and carry him back to the waiting room.  He slowly starts to wake.

We all decide to get a bite to eat since we have almost 2 hours before the GI doctor appointment.  We make ourselves comfortable in the hospitals cafe area.  The boys scarf food down while I whittle down my third cup of coffee of the morning.  We all admire the titanic Christmas tree that is adorned with ornaments as large as basketballs.  Pink, turquoise, purple and gold.  In between bites we discuss ornaments that are alike and ones that are our favorites, which ones match, and which ones are unique.  To wrap, the boys gleefully trot around the tree and play a mild game of tag.

Before long, our party hikes up to the GI doctors waiting area and plant ourselves down with the 'caws' and 'grunts' of Angry Birds.  It is in this moment that I see my opportunity, I head back up to the reception desk and to have our nurse practitioner paged.  Within a couple of minutes our kind nurse meets us and we explain our concerns about the increased coughing after finishing the most recent antibiotics.  After listening thoughtfully she says, "Is he always this pale?"  I laugh nervously and we comment that yes Michael has always been the fair one and Dylan the very dark one.  But I know she is right.  He is more white than usual.  She agrees that Michael should be swabbed again to see if he cultures anything.  I walk him to an exam room.  Michael looks at me, his feet swinging as he sits high atop the exam table.  "I am brave for the swab, Mommy.  I like it.  I just don't like bloodwork or shots."  My heart sinks a bit and I reassure him that she should just swab his throat.  "It's okay.  The swab is okay."  I know how brave this kid is.  And unfortunately, how routine this has all become for him in his life.

Soon we meet with the GI doctor and get some good news - bad news.

Good news, the last appointment's growth measurements must have been a fluke.  I snicker inside...  perhaps a belated Christmas present?  Needless worry, but I am thankful.  Based on today's numbers, both kids are growing beautifully.  They both look great, the doctor and her fellow doctor confirm.  I feel the streamers and confetti float down in my mental celebration.  Oh.  Joy!

Bad news, she confirms that Michael's breathing has some crackles that are very apparent.  She suggests just to keep an eye on it and see what the culture grows.  We aren't there for a pulmonary check up anyways, so I don't think too much of the assessment.

New year, new things.  New things for sure.

We ring in the new year quietly, not quite the parties and revelery of years' past.  Quiet is good with me.

January 2nd doesn't miss a beat as my husband hustles Michael to the bus stop, hops in his car and scurries to work.  I rush out with Dylan in tow and get him to school promptly as a nod to the new year and an unspoken punctuality resolution for the new year.

I run a few meaningless errands and find myself unlocking my front door.  I jiggle the key nervously and with a sense of urgency.  The dog barks her joyous greeting and cries like I haven't been home in two weeks.  I pat her on the head as I immediately drop my white plastic bags emblazoned with a red bulls eyes on the floor.  She jumps back with startle.  I don't wait a second.  I just know a message is waiting on our machine at home.

Sometimes.  YOU.  JUST.  KNOW.

I hastily rush into our home office without removing my trusty white winter fleece jacket or my favorite new gray UGGS.  There is purpose and precision in my movement.  I lunge for the the blinking answering machine and my index finger and the silver button collide.

A robotic voice that I have heard thousands of times before says the same line...  "You. have. one. new. message."  Heartless, unemotional machine.  This message is about to unleash a tidal wave of heartache.  The least it could do is be supportive.

It is the nurse practitioner from the boys' CF care team.  She has news about Michael's culture and to please return her call.  My fingers rush to dial the number and she tells me what I have already felt that I have known - except it's even more intense than I expected.

"Has Michael ever cultured Pseudomonas before?"  An invisible force shoves me into the chair at the desk as my knees buckle.  The chair catches my weight and almost bounces with response.  She continues that Michael's throat culture shows both strains of "mucoid" and "non-mucoid" Pseudomonas.  And unfortunately, I already know what these terms mean.  I rub my forehead as we continue our conversation.  I rub so hard I make my temples ache.  My shoulders tight and rigid, I cannot process the stress that pulls my muscles taut across my neck, shoulders and upper back.  It a normal state of being for me.

You see, Pseudomonas is a bacteria.  A really nasty, dangerous bacteria.  It isn't too different that other more well-known culprits of infection like Staph, Strep, E. Coli, even MRSA...  but Pseudomonas has a different reputation in the CF community.

Pseudomonas is like the a-hole at the CF party that no one likes.  Not too soon after the shindig gets underway you are forced to toss P. Seu from the party.  But he shows back up... with more of his a-hole friends.  Mucoid Pseudemonas is when that same a-hole brings a posse of bodyguards back with him to the party and they force their way in.  You do your best with your personal bouncer to throw him and his gang out, but it becomes too hard with P. Seu's crew and street smarts.

Let's be honest, he's just a jerk.  And you learn to live with him.  So does everyone else.

The problem with our smug buddy is that he has figured out the best way to overstay his welcome and party on...  even when you're not in the mood.  There is really no making him leave because his bodyguards are unrelenting and tough (which literally speaking is a biofilm insulation that the bacteria has created to become more resistant to antibiotics).  You are forced to put up with him and more of his idiot friends staying at your place (translation:  the bacteria begins colonizing and and taking up space in the lungs).  Finally, this posse of jerks begin to DAMAGE your place from the partying and from cramming into your pad.  Holes in the walls, beer spills on the floor, and floorboards cracking beneath the party's feet.  You just want your home back!  This last aspect is the worst about your house guest.  In a CF patient's world, it means IRREVERSIBLE.  LUNG. DAMAGE.

To get this call from the CF Care Center nurse, means, we have an unwanted, uninvited house guest who has no intentions of leaving at our life party.  And it sucks.

My heart is heavy, because I know what it means.  I review with the nurse the next steps to start Michael on a course of more medications to help fight the infection.  Basically, these meds are the SWAT team and the specialty forces ready to remove P. Seu and his cohorts who have begun camping out in Michael's little lungs.

It means more yuck tasting medications.
It means waking Michael up at 6:30 am in the dark of winter to complete all of his treatments to catch the bus on time.
It means isolating him from Dylan two separate times a day to run courses of an inhaled antibiotic (since we don't want Dylan to develop resistance to the antibiotics since some day that same idiot will try to take real estate in his lungs.)
It means a LOT more juggling.
And it means less rest for Michael's already tough schedule for a five-year-old.

I begin weeping when I hang up the phone.  Frustrated with CF.  Frustrated with the brutal routine that has become our lives.  Frustrated with how much harder it will become.  Frustrated at how unfair it all is.

I glance at my watch and shake my spinning head.  I decide to climb in the cold car and gather myself as I have to pick Dylan up at preschool.  I wipe up my smeared mascara with my finger in the mirror.  Funny how I continue the facade of a normal life, when so much of what we do feels so -- abnormal.  I paint the "normal facade" onto my face.  I can still feel the sadness and anger deep inside as I touch up my eyes and slide on my favorite weathered Prada sunglasses.  A sleek black tube of mascara and a designer pair of shades can hide so much.  My facade.  I inhale deeply, force our my exhale.

As I do so, I punch the radio hard with my knuckle and my car's CD player kicks in.  LMFAO's "Party Rockers" blares as I pull out and head to the preschool.  I smile.  Every day last summer the boys and I would jam out to this song in the car on the way to the pool.  Dance party! I would try to get them moving and grooving in the safety of their carseats.

I embrace my anthem this morning.  Party, huh?  I snort, aloud.

"Every day I am shuf-shuf-shuffling..."  The bass of the music pumps against the beat in my heart.  The rhythms completely off.

Well, it's not quite the party of I was thinking of to ring in the new year.  I blink away the tears beneath my shades.  "Party Rockers in the HOUSE tonight...  Everybody have a good-good-good time."

Life's a party.

And I fully intend on kicking some ass this time around.