Before our youngest son was born eight years ago, cold and flu season didn’t seem like too big of a deal.
Each of our three kids usually came down with at least one cold during that time, and when April rolled around and the season was over, we breathed a little sigh of relief.
And then Chance arrived and suddenly cold and flu season became year-round for us.
After going into acute respiratory failure at two days old, Chance was placed on an Extracorporeal membrane oxygenation (ECMO) machine.
This treatment uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill person.
It provides heart-lung bypass support outside of the body. It looks as scary as it sounds and is very much a last resort type treatment.
He survived this, only to contract a staph infection in his lung, which required weeks of IV antibiotics and left him with compromised lungs from all the trauma he’d gone through.
Over the next few years, he was admitted to the hospital at least twice a year for respiratory issues. He would stay anywhere from a few days to two weeks.
Many of those stays required him to be on a ventilator, and all of them started with a simple cold.
As he grew older, the hospital stays became less frequent, but we also learned the hard way that respiratory issues were not always confined to the winter months.
He was in the Pediatric Intensive Care Unit for a week in June of 2013 and just last August the smoke from the wildfires here in Northern CA led to pneumonia despite an air purifier in the house and wearing a filtered mask outside.
Chronic Lung Disease is deceptive and sneaky.
My kid can look fine in the morning, and by night time, his breathing is so labored we need to rush him to the ER. This has happened more times than I care to count.
It happened just a few months ago. He was acting like his usual chipper self at breakfast, but by 3pm was feverish and lethargic, and his oxygen saturation was lower than it should have been.
Chronic Lung Disease is like the dementors in the Harry Potter books; not only does it take my child’s breath away; it casts a gloom on everyone it touches when Chance is ill.
Every time he gets a cough, my mind goes straight back to seeing him hooked up to the ECMO machine; watching a machine doing his body’s work for him.
Sitting in the ER a few months ago, I was mentally preparing for admission and a possible med flight to a bigger hospital.
My mind always goes to the worst-case scenario now; I’m pretty sure it’s a defence mechanism.
That, or just straight up PTSD. This time we got lucky. He was diagnosed with pneumonia and sent home with antibiotics; we had caught it early.
Chronic Lung Disease will always be a part of our lives, and we will always be on edge every time a cold goes through the house or his classroom.
If there is a silver lining to Chronic Lung Disease, it is that it makes you slow down and learn not to sweat the small stuff.
It makes you aware of who you want to be surrounded by and who you would rather distance yourself from. It gives your perspective and shows you how resilient and strong kids can be.
It has also shown me how strong I can be as a mother, as it has forced me to make decisions I never dreamed I’d have to make.
It has also taught me how to advocate for my son and myself. Most of all, it has taught me that there are always life lessons to be learned.