Erik Quinn: The Heart of a Family: Echocardiogram

Friday, May 26, 2006


Yesterday morning Erik and I drove to the clinic for his followup echocardiogram. He was understandably surly from being denied breakfast. Brian met us in the waiting room, where Erik entertained the staff and other patients by walking around in his Squeakers, tennis shoes that sound like a doggie chew toy with every step. It feels strange being a patient’s mother in the place I used to work for nearly a decade. For years, I used to transcribe echocardiograms directly into the cardiology department’s archaic computer system in a cramped, dark room early in the morning while I had my first cup of coffee. I frequently typed reports on kids without thinking much about their tiny bodies or their fearful parents faking smiles in exam rooms. I realize now that on the other side of the medical report there is a world of anxiety and bargaining with God. Our little family was led into an exam room, where Erik was weighed and measured. He was then stripped down to his diaper, and we signed consent forms for the medication that would make him sleep. I hate watching Erik run around in his diaper because he looks painfully skinny, stiff-limbed, and awkward. I watched every muscle in his body contract and relax as he moved about, his ribs and spine cruelly showing through his pale skin. Erik was not hugely impressed with their very wheel-less toy selection, a collection of likely germ-infested plush animals. At that point, the tech presented Erik with the exact same fish puppet that sent him into orbit last time. I cringed visibly as she pushed a hidden button and the seemingly innocent toy emitted a horrible bubbling sound like Jimmy Hoffa drowning in the Hudson River. I am sick to death of explaining the whole Williams/hypersensitivity to sound thing to people and have decided Erik has to learn to cope with this noisy planet at some point anyway. He turned his face into me but remained tear-free. After signing the papers, we then settled in the echo room, a cramped space with a gurney-like bed and chairs surrounding it. The ultrasound machine, roughly the size of a Geo Metro, hummed ominously in the corner of the room. The techs filled a needleless syringe with chloral hydrate, a foul-tasting, pink liquid, and we held our screaming, crying child down so they could force it down his throat. Even after all we have been through, I continue to fight back tears myself. The lights were turned off, and we were instructed to soothe Erik to sleep. Erik and I sat in the strangely out of place looking glider rocker (Mother Hubbard meets Jonas Salk). We rocked for some time, but Erik fought the medication and tweaked his lips to make the satisfying “bibble” sound he loves so much. When he slowed down a bit, we laid him on the gurney. Each time we thought he had fallen asleep, his eyes would pop open, and we would get a bibble-bibble and a sleepy, drunken wave. The techs gave him a smaller second dose, which Erik didn’t protest this time, and he finally slipped into an alarmingly soundless, un-Erik-like sleep. The techs attached three leads to Erik’s chest, a blood pressure cuff, and a vital sign monitor that glowed like a red-hot ember on his toe. The tech at the lighted keypad and monitor gooped up the ultrasound wand and ran it over the contours of his chest. This is how the entire procedure went from this point on for what seemed like an eternity. We watched the valves and chambers of Erik’s heart convulse through a pie-shaped area on the computer screen. The tech would snap still photos of some areas with the computer, and the machine then spit them out through a slot on the side. Brian and I sat quietly to the side of the gurney while the techs talked and did their jobs. I wished I was back on their side of things, not watching my own little boy lying motionless under wire cobwebs looking suddenly very grown up. The pressure in my head seemed unbearable, and I felt like screaming. I was filled with frustration knowing that we will spend the next years waiting like this, at times steeped in anxiety. Waiting to see if Erik’s health will hold. Waiting to see what his abilities are. Waiting to see how bad his syndrome will be as he ages. Waiting to see if he will be teased at school. Waiting to see if he will be a desperately lonely, perpetually unmarried man as his friends around him start their own families. Waiting in rooms designed just for waiting and filled with disgustingly chipper parenting magazines. Waiting for the other shoe to drop when things might turn out just fine. I closed my eyes and could not escape the sound of his heart, translated by computer to sterile, electronic beeping. I tried to will myself into the mural on the wall, a cartoonish cutaway view of the beach and ocean at twilight with a giant whale leaping up and piercing the surface of the sea. It made for kind of a pleasant effect in the amber glow of the machines under the pink, plastic, glow-in-the-dark stars. After what seemed like a lifetime, the echo leads were disconnected, an ECG machine was wheeled in, and another tech hooked up yet more wires with clips that bit into new stickers placed in strategic places on Erik’s chest. This machine ejected another paper strip printed with the rhythm of Erik’s heart. After the goop, equipment, and wires were removed from our son, the moment of truth had arrived. Dr. T. stepped into the room and informed us that everything looked normal, although she did not guarantee things would remain normal as he grew. We would be sitting here yet again in one to two years. We are deeply thankful for this news and the relief it provides, although for some reason we don't talk about it much or feel like celebrating. To me, it seems unnatural to react at all to what physicians tell us anymore, which must look strange, but we always say the standard "that's greats" and "thank yous" we carry with us for such an occasion. The pressure in my head began to subside. Erik woke up long enough to have a little water from a paper cup, and they allowed us to go home. Brian placed Erik in his car seat and said goodbye to us before we went our separate ways for the day. When we arrived home, I tucked Erik in his crib, smoothed his hair, and gave him his binky. He looked at his surroundings briefly, seemed to nod his approval, and shut his eyes.


Blogger Teresa & Shawn said...

Oh, Nancy, you brought tears to my eyes again. Just when I think I’ve cried all my tears over what our precious babies have to go through, I find there is so much more in there. You are an incredible writer. Your sharing of your experience with Erik’s echo reverberates in my heart because that is exactly how I feel every time we go in with Clare. She has her next sedated echo in about a week. We are still on the every three month plan (much better than the monthly plan we were on previously!), so I am envious of your 1-2 year possibility! I am glad to hear that Erik’s heart was status quo. (Will we ever hear that our children’s hearts look “good”??)

Take care,

6:46 PM  

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