The Sum of All Fears...

I have a few “fears”…. I guess we all do. Or we’re lying about it. I remember being a kid and being afraid of walking to my bed when the light was off.  I couldn’t reach the light switch from my bed and I didn’t like sleeping with the light on. My fix to that situation was to leap like an Olympian from the doorway to my bed. I was quite good at it. What exactly is fear?  The online dictionary I use frequently says, “ Fear, noun, (1) a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined;”  It’s important to note that the definition painfully points out “real or imagined.”  Fear.  I also have an unnatural fear of flying insects that look angry and have the capability to sting me since being stung multiple times by really ticked off wasps as a youngster (my sister’s fault).  

Fear.  My battle with heart disease began when I was in labor with my first child and continued to deteriorate over time and with my second pregnancy.  For almost 9 years, I have silently feared that somehow I passed along a mutant gene that would cause my child(ren) to inherit various shapes and forms of heart disease since then.   Over the years, I’ve often been asked if I passed my disease along to my children or if I inherited my ‘heart issues’ from my parents.   As I spoke the words, “No…. my heart conditions are not considered hereditary,” I often wondered in the back of my head if that was really true.

Fear.  Last Friday night, after finally settling the kids into bed, my oldest son…. Very handsome, intense, funny, dramatic, athletic, 8 year old (almost 9) boy says, “Mommy, come feel my chest.”  I immediately became sick to my stomach.  Somehow, I intuitively knew what that meant. Each step toward the bed where he was laying felt like I had on cement shoes (which isn’t out of the realm of possibility since I am Italian).  I sat on the edge of the bed. His small hand reached for mine and placed it ever so gently on his chest.  I closed my eyes and drew in and held a long breath.   It felt as if my head would implode as I felt to all too familiar hard and irregular heartbeats in his chest.  I wanted to scoop him up, squeeze him tightly and collapse in a fit of fear and rage.  I was so relieved that the room was dark to prevent him seeing the blood drain from my body.   I choked back the tears and suggested that he just relax and take a few deep breaths.  I tried to reassure him that what he was experiencing was quite normal for many people, including kids. Which is true… doctors have told me that for years… I’ve regurgitated that when asked to speak for groups or at meetings….  Or when I’ve been asked in one-on-one conversations.  After several minutes, his heartbeat seemed to return to normal.  I was leaving the room as he was drifting off to sleep I remembered I was holding my breath. As I closed the door behind me, I gasped for a breath and was quickly reduced to a heap on the living room floor.  I could hear me talking to out loud, reassuring myself that this was quite normal, and to be safe I would call the doctor to schedule a physical and a heart evaluation (to include a blood pressure evaluation, 12-lead EKG (electrocardiogram) and an echocardiogram, AKA echo).  All of that would certainly quell my fear. Right?

My husband suggested that he take the boy to the pediatrician and when we arrived at the cardiologist stage…. THEN I would attend. Only after I gave him several minutes of both verbal and written instruction, I conceded.  The appointment was scheduled for Wednesday.  As I suspected, the pediatrician did not hear anything abnormal when listening to my son’s heart through a stethoscope.  Ain’t that always the way??  This is when my hubby was informed that the pediatrician cannot order an echo. The only way to have an echo is to jump through several hoops that would make any circus clown cringe.  After a quick consult with my husband over the phone, I asked him to jump through those hoops.  So off they went.  Hoop #1: blood work.  Completely expected yet despised by the kid.  Somehow, when a needle is produced within a 10-foot radius, the kid develops super human strength that would rival that of a comic book hero.  Hoop #2: leave the hospital building where the pediatrician’s office is and transport the now ‘jabbed’ and VERY suspicious kid to a different local hospital to be seen by a technician to conduct the 12-lead EKG.

EKG’s are relatively painless with the exception of the removal of the hairs on your arms, legs and chest where the sticky pieces for the electrodes go and are often removed abruptly by the tech  – it’s all good.  Hoop #3: WAIT.  Ugh!  Apparently, the process is to have the EKG done…. Then wait for someone, a Cardiologist hopefully, to read the report, then hopefully said Cardiologist with call the pediatrician and discuss the results.  Most people I know…. Don’t do well with the wait… but that’s where we are. Allegedly, if the EKG is “normal”, which I completely expect it to be…. We do not qualify for an echocardiogram regardless of our willingness to pay for it out of our own pocket.  Of course, I got hot and bothered over that information.  After my husband talked me down from that ledge, I agreed to wait for the results of the EKG and THEN ask/tell the pediatrician we want to have the boy evaluated by a cardiologist… if THAT is what is necessary to get this kid an echo, that I willing to pay out of pocket for.

I don’t understand.  An estimated 20 young, active kids die EVERY day in the U.S. from sudden cardiac death for various reasons. Cardiologists know that you cannot detect a structural defect by listening to the heart or seeing how it behaves in an EKG. Some conditions may be detected that way, but not all.  We also know that electrical issues in the heart that cause irregular heart beat (aka arrhythmias) are incredibly difficult to diagnose. I get the fact that we are tied to the medical insurance rules and regulations.  But I’ve already told you that I will pay for the echocardiogram out of my own purse… So tell me again, WHAT ARE WE WAITING FOR?? Listen, I am all about playing by the rules. The rules are there for a reason.  Respect the rules!  Where I get sideways is when the rules DON’T MAKE SENSE.   There is a FAMILY HISTORY (risk factor) of heart disease. The kid had an “event” (risk factor). I’m willing to bear the costs associated with getting him tested (obstacle)! Let’s do this!

I’m not any different from many of you, my stupendous readers!  I’m a pseudo-normal, funny, passionate, understanding parent until….. you mess with my kids.  Then I become, a finger pointing, voice-raising, head shaking, “Oh no you didn’t”, kinda mom that tends to become terse and very outspoken.  I’ll own that. Don’t. Mess. With. My. Kids.  So… in the meantime, I will do my best to continue jumping through the hoops in order to ensure my kid is ok. I will not rest until I do.  My advice to you? Do NOT take no for an answer.  Think about it this way… NEVER put yourself in a position to say, “I should have___________ but now it’s too late!”  I love ya peeps!! Peace. Out.