The Sum of All Fears - The Saga Continues, Part III

We made it …. Done with the waiting. That “Friday” finally arrived! We were entering the new building where the pediatric cardiologist “lived”.  I wasn’t sure what to expect. I’ve been going to specialists for so long now that I’ve forgotten what it was like visiting for the first time.  But this was different. I’m not the patient in this office.  I am the parent.  In stark contrast to my visits to the doc….  I felt anxious. Uneasy. Not comfortable. Almost sick to my stomach.  The thought of one of my beautiful, God-given children being diagnosed with heart disease makes me physically ill.  When I would stop to ponder those thoughts for any amount of time, I couldn’t help but get choked up and tears would well up in my eyes. I was feeling completely responsible for passing that mutant gene along to my kids…. UGH….

As I sat with my kids in the waiting room, I tried to take it all in… the sights. The sounds.  What was striking to me were the seemingly healthy kids of various ages.  There were several newborns, a couple new crawlers, a toddler, and a few preschoolers and a couple older kids. Ethnicity varied from patient to patient.  I wondered what was going through the parents minds.  Where they a little sick to their stomachs? Did they experience guilt for passing something on to their new babies? Or were they being seen for something completely out of left field… where they angry about it? Were they scared? I wondered if they lost sleep the night before. I wondered if any shed any tears. I can tell you I rode a wave of emotion.  One moment I was diverting the looks of my children because I was choking back tears and the next moment I was fine – because I was scolding one of them for something appalling – like whining. 

The appointment starting off with a 45 minute wait in the lobby.  Then we were called back to triage where height and weight measurements were taken along with 12-lead EKG’s. The boys were quite uncomfortable taking their shirts off in front of the nurse – they giggled nervously (I wonder how long they will be like that?). Both my kids are incredibly ticklish so they giggled and squirmed through the sticky pieces being placed on their bodies – not to mention complain a little because they were so cold!  I must admit – they are right!   It was a little anti-climatic when we were asked to return to the lobby to continue to wait. But what were we gonna do? Rebel? Begin a picket line? Pitch a fit? Right… I would never do that (besides that never worked for me before).  

We were finally called up to the BIGS…. We were all put in a room and we were questioned by the nurse – she pressed us about my history and then my family history.  And then the doctor arrived.  A vertically challenged, Asian man with a big smile, oversized glasses and a bow tie arrived on the scene.  He asked us similar questions about my heart disease and family history.  He asked the boys who wanted to go first. My oldest jumped at the chance to go first. Brave? Sure.  But he relishes the ability to be bigger, better, first over his little brother. It’s a thing.  The oldest did great.

My youngest was only a little apprehensive about taking his shirt off again… but he climbed right up on the exam table without any assistance and lay down.  Both were great patients. The 4 year old asked an incredibly intelligent question of the doctor.  “So what is the “goo” for?”  The doctor explained patiently to him what the ‘goo’ was for… I think TJ lost interest about midway through when he was trying to explain sound waves.  The boys were mesmerized by the gray, fuzzy shadows and patterns the doctor said was their heart. Both seemed only to mind the procedure when it was time to wipe off the “goo”.  Of course, the “goo” was cold by then.  

The doc said that both hearts were structurally sound, pumping and valve function look good and strong. The electrical disturbance Hunter experienced was not captured therefore, not diagnosed. The doc indicated that we should return if the frequency of the “hard” beats increases otherwise return in 5 years for another evaluation.

I asked why it is so difficult to get to see a cardiologist – his reply is that it shouldn’t be.  I already knew that answer.  So, we all shook hands and I returned to work after agreeing to meet up later for dinner.  My boys and their dad went shopping for my “early” birthday present.  I met them at one of our favorite restaurants. As we were beginning to dive into the food, Hunter puts his fork down and says, “Mommy, feel my chest.”  UGH….. the saga continues.... God is in CONTROL!!

The Sum of All Fears... Part 2

As you may remember, where we left off was … WAITING! Waiting for the blood work and EKG results from last week.  We were told that we should hear something from ‘someone’ by Thursday or Friday.  Often, when we press for more information about the ‘someone’ who will be calling, I am met with silence and or a long “uhhhhhhh.”  I can only assume that most patients accept the fact the unidentified ‘someone’ will be calling them.  Maybe most folks are happy that they will be receiving a phone call… from ‘anyone’.  Even this guy??


I’m dating myself now… I digress. 

Thursday came and went without a peep from ‘someone’.  Friday arrived.  Of course the call to my husband’s cell phone occurred when he was on the riding lawn mower at the athletic park where the kids play sports…. He didn’t hear the phone ring when that ‘someone’ was trying to call him THREE times.

He finally connected with the ‘someone’ who was trying to reach him. In fact, this time, that ‘someone’ was the boy’s pediatrician.  Of course the blood work and EKG for Hunter was COMPLETELY NORMAL! PTL! However, since there is a ‘dramatic’ family history of cardiac issues, the DOCTOR is recommending that BOTH boys see a pediatric cardiologist for full cardiac workup.  I’m SOOOOO glad she thought of it! Geeesh!  The pediatrician also recommends that we consult a genetic counselor. Ohhh goodie!  That’s  Lovely!  Ok – genetic counseling can sometimes help predict whether they will develop that heart condition in the future. Maybe.  But basically we will be attempting to determine if I inherited the same mutant gene and passed it to my beautiful boys.

There is so much that is unknown about cardiac stuff (yes, I said “stuff”… I use it as a technical term), it’s scary.  Protocols and procedures that used to be prescribed to treat certain heart diseases are now known as being detrimental to the patient and their prognosis.  Currently, I have not been diagnosed with ANY genetic heart diseases and I have NO structural defect that I am aware of that would cause concern either.  

My point to all the blathering???  Why is it so difficult to have my boys evaluated? Especially, in light of the fact, I am willing to pay for it, out of pocket!! Why do I have to suggest such an evaluation to a pediatrician my youngest has had since birth and my oldest since he was 3? 

And furthermore…. Why are kids not required to have a physical and full cardiac workup every year?? Why do we not require it as discerning parents? Why do we allow a physician that may see your kid once or twice a year make potentially life-altering decisions about your child’s care? I mean, let’s face it folks, some of us struggled to have babies. Some of us struggle to keep our kids healthy. Some of us struggle not to pop the little ankle-biters in the back of the head on a regular basis.  I say again…. WHY??  

This coming Friday, we are taking BOTH boys to the pediatric cardiologist.  I’m so glad they thought of it!! 

More to come! 

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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.