Hindsight is not always 20/20. Sometimes a Hubble-sized telescope won’t even allow us to comprehend disease as it silently takes its toll.
Sheri and I awoke before sunrise on June 17 to take Jonah to Vanderbilt Children’s Hospital. Scheduled for a three-hour heart catheter procedure, we would finally be confirming his diagnosis for pulmonary hypertension (PH) and how to provide the best life possible for him. Or, God willing, finding out that my 10-year-old joymaker did not at all have the terrible disease. A heart cath was the only way to properly diagnose it, in addition to finding out what the best treatment options would be.
Jonah was nervous. The night before he had hardly enjoyed a drop of his Grape Nerds Slush. And as we helped him get ready, he reached a level of worry I never saw. He was typically fearless. Scared of nothing... except needles. And that morning, even after simplifying and explaining again how the procedure was necessary to make him better, Jonah had worked himself into a state of nausea. Like times before, mommy handed him her iPad. Jonah settled and played his favorite games during the ride to Nashville and didn’t stop as we sat in the waiting room. My parents, Mamaw and Papaw, had traveled to be with Jonah for the procedure, as well.
Years prior to this day, Jonah had been diagnosed with asthma. His daily regimen of meds included inhalers and allergy medicines. Besides the often-occurring sinus infections, bronchitis and pneumonia, he played hard, laughed hard and hugged even harder. An embrace from Jonah was always heartfelt. At 10 years, our 8-year-old daughter stood inches taller than Jonah. He was small but everyone knew he had a big heart.
Fearing that he would later experience ridicule for his small stature, Jonah was taken to an endocrinologist to see if he was a candidate for growth hormones. The visit prompted an echocardiogram because something didn’t sound quite right. Jonah wasn’t new to this procedure; he was born with a small ventricular septal defect (VSD), a common type of heart irregularity where a hole exists in the wall separating the two lower chambers of the heart. Amidst the asthma, Jonah remained strong and the hole managed to close on its own by the time he was 6.
Now at 10, we weren’t dealing with VSD, but something potentially more serious. The cardiologist routed us to a pulmonary doctor at Vanderbilt in January 2015 who also observed signs of PH. We were handed a glimmer of hope when the pulmonologist stated that if Jonah did have it, we caught it early because he wasn’t symptomatic beyond asthma. Heart caths were scheduled then cancelled twice due to Jonah becoming ill and having to take antibiotics. Our third attempt for a heart cath was scheduled for June. Although he once again became ill with bronchitis, he was able to complete his antibiotics and be symptom free by mid June.
During the weeks leading to June 17, Jonah began offering more hugs. And during that time we cannot remember once passing him when he didn’t say, “I love you, mommy” or “I love you, daddy.” Jonah also was getting winded easier and played less.
By the time he was ready to be transported to the procedure room, Jonah was tired. His heart had raced all morn due to the anxiety and now his body wanted to rest. We walked beside his bed as far as we were allowed and then kissed him before he was wheeled away.
After receiving anesthesia, Jonah’s vitals remained within acceptable limits.
But 10 minutes later, before the catheter was introduced to his body, his heart succumbed to the stress we never knew; his laughter and love for life had fooled us all. After 30 minutes of CPR, he was placed on life support where he would remain until the doctors were able to analyze brain damage and his inability to maintain a heartbeat without assistance.
On June 21, 2015, 3 months and 1 day shy of my joymaker’s 11th birthday… before Jonah could experience his first year in middle school… before we got our first puppy… before we took our first trip to Disney… before we had the opportunity to watch the life of our second child unfold… we said goodbye. Jonah had experienced a pulmonary hypertension crisis and would not be returning home.
Jonah Scott Guider
September 22, 2004 – June 21, 2015