Lessons from Sam #8: Good health is a gift.

As a kid, I got sick nearly every Christmas–ironically during those two weeks off from school. In the wee hours of the morning, I’d wake up to a sharp throbbing in my left ear. I’d debate whether to bother my parents but the piercing pain drove me to my mom’s bedside. After a quick change of clothes, she and I were out the door. Hours later, we’d return home from the dreaded ER with my signature cocktail: Amoxicillin and Tylenol with Codeine.

 

 

Ear infections were my nemesis, assaulting my immune system, leaving me confined to the couch with a heating pad beneath my left ear. One year, I was sick for three weeks straight, skipping school for an ear infection that ended with a punctured ear drum. Lethargic and pale with no appetite, I lost 10 pounds. Recovery was slow and my only interest was sleep. I remember thinking that I’d rather attempt a Van Gogh than endure that kind of pain again.

 

 

Two weeks of illness each year are hardly worth noting, especially compared to the more complicated issues that Sam has handled in his short life. When he was still swimming in his first mama’s belly, we learned that he had duodenal atresia (DA): a blockage between his large and small intestines. Without surgery, he could not pass milk through his digestive system. In the days before diagnostic testing, babies born with DA often died. After each feeding, they would vomit because their milk had nowhere to go. By the time parents realized that this issue was more critical than reflux, their babies were severely dehydrated and most did not survive. Ultrasounds, pediatric anesthesiology, and DA surgery have saved the lives of countless children. Sam is one of them.

The day after his birth, Sam was wheeled out of the NICU and into the OR. I kissed his soft cheeks, squeezed his tiny hands, and whispered “I love you”. Hours later, Sam’s kind and brilliant surgeon told us, “I basically went in and roto rooted. He had a web between his large and small intestines so it wasn’t as complicated as we had anticipated. He’s doing just fine.” While we were relieved by this good news, seeing his vent, multiple tubes, and the IV in his head was sobering. The anesthesiologist later told us that Sam’s airway is “really narrow”, which only deepened our gratitude for a successful outcome. One by one, his tubes were disconnected and after nearly a month in the NICU, Sam was discharged.

 

 

 

In addition to DA and some minor heart issues that have resolved, Sam was born with a hearing deficit. He passed his newborn test but audiologist reports indicate fluid in both ears. He is due for new tubes in the coming months. We’ll see the audiologist in early 2018 to determine whether the tubes are effective or whether his hearing deficits are related to his inner ear structure.

Sam’s main weakness is his respiratory system. As I write, he sounds like a pig–snorting when he runs or dives onto the couch. We’re on our third week of fighting sinus congestion. His short, restricted nasal passages prevent fluid from draining properly and when it finally drains, he battles a nasty cough.

Kiddos with Ds get sick frequently due to their weaker-than-typical immune systems and once they get sick, their recovery is slow. What begins as a minor cold for Sam will often develop into croup or respiratory distress that requires oral steroids and daily breathing treatments for weeks.

I hope that Sam will outgrow these complications but I’ve accepted the reality that this may be a lifelong struggle. In the meantime, his ENT plans to remove his tonsils & adenoids, apparent obstacles to his respiratory health. We’ll have more answers in the next few months.

 

 

When Sam is healthy, we enjoy running errands, connecting with friends, walking to the park, and participating in local events. As soon as he gets a stuffy nose, I brace myself for weeks of medication and hibernation. I don’t begrudge the slower place, extra snuggles, or barking cough but I get discouraged for him–his discomfort, restless nights, and limited social interaction.

Sam has taught me that good health is a gift. His frequent allergy flare-ups and colds remind me to celebrate the healthy seasons when he breathes more freely and we don’t have to stock pile tissues. I silently rejoice when I can put away the nebulizer with its turquoise tubes and clear plastic vials that work magic on his lungs. The medicine droppers and cough syrups return to their bin in the bathroom closet and our counters are free of pharmaceuticals once again.

I understand that life offers no guarantees and can change suddenly, unexpectedly. I cannot predict Sam’s future health (or my own). Down syndrome can bring some potentially scary health issues but I refuse to fret about the unknown or wallow in pity when Sam is sick. Instead, I’m going to savor each day I have with my sweet boy and thank God for the gift of health, whenever it is given.