Mom Says Son's Five-Month COVID Bout Can Only Be Described As Hellacious
In this essay, a Jacksonville mom shares her family’s experience with her 13-year-old son’s COVID diagnosis: an ongoing blur of isolation and helplessness.
Editor's Note: Heather Schatz is the senior producer of WJCT News' talk shows. In this essay she shares her family’s experience with her son’s COVID diagnosis.
My 13-year-old son, Kyle, is one of the bravest people I know.
For nearly five months, my family and I have watched him — sometimes helplessly (but never hopelessly) — struggle first with COVID-19, then with long-haul COVID.
After he was quarantined last fall for potential exposure, just a few weeks into the school year, we decided to switch him back to distance learning. He had a tendency to develop asthmatic symptoms when he got respiratory infections, and I have asthma and other COVID risk factors.
As the months wore on, we continued to take every precaution we could. Our younger daughter also attended school virtually, and for the most part, my husband and I worked remotely. On the rare occasions we went anywhere, we all masked up.
Yet, COVID still found us.
In early February, Kyle, who was 12 at the time, showed signs of having a cold, so we took him for a COVID test, which came back negative. His doctor treated him for a respiratory infection, and he showed some improvement initially, but then he started to decline.
A few days later: another COVID test. This time it was positive. We were gobsmacked. After all, we had tried to do everything “right”. (We still don’t know how or where he got it, despite our best efforts at contact tracing.) We were also afraid.
The days that followed are a blur, but there is no way to describe them other than hellacious. For the most part, we left his meals and medicines at his door. Because I am high risk, I had to be extra cautious and steer clear of him altogether. My husband would occasionally go into Kyle’s room to care for him, with two masks on, but he was unable to comfort him the way he wanted to. The only way we could really “keep him company” was via FaceTime, when he felt up to it.
Kyle shared his story on WJCT's First Coast Connect with Melissa Ross this past week. He said the hardest part of having COVID was “not being able to see anyone, I think, just being by myself for a while.”
We wanted nothing more than to give him a hug or spend time with him — but we couldn’t, not until he was no longer considered contagious, about two weeks later. Nor were we able to get support from friends or family in person, due to the fact that we were all quarantined. So, just when we needed our village the most, it felt like we were stuck on an island in the middle of the ocean that no one could get to, and we could not get off.
From the get-go, his worst symptoms were crushing fatigue and a non-stop cough, which nothing seemed to help. The sound of his cough — similar to a croup cough, but more intense — hurt my heart and will haunt me forever. It also kept him up for most of the night, making his other symptoms, like fatigue and headaches, worse.
“I was just kind of sitting in bed, choking all day,” he said. “And then it was like impossible to fall asleep. I didn't fall asleep till 8:30 in the morning. And I lay down and I went to bed at 10:30 at night.”
Kyle’s cough continued to get worse, but his primary care doctor would not see him because he was still contagious, so my husband took him to the ER. They gave him a dose of the steroid dexamethasone and sent him home. After he did not improve for days, we went back to the ER. They ran a battery of tests, including one that came back negative for COVID, and we were told to just keep a close eye on him at home until he could see the specialists they had connected us to as an outpatient.
All his symptoms continued, and each night, we told ourselves, “Tomorrow is the day he will wake up and feel better.” That day never seemed to arrive.
But, through it all, he rarely complained and kept saying that he was worried about the rest of us — especially about the toll the stress was taking.
Fortunately, none of the rest of us got COVID, possibly because we had all masked up around the house at the first sign of his cold symptoms (and I was partially vaccinated).
After 14 days, we were able to take him to other doctors, which included a pediatric infectious disease specialist, pulmonologist, and asthma-allergy specialists, as well as his primary care doctor.
They tried steroids, antibiotics, asthma medicine and several inhalers. Nothing seemed to help. His cough wouldn’t quit, and neither would his fatigue or headaches.
In April, his pulmonologist wanted to get a better look at his lungs, which had shown some damage in a previous X-ray. I’ve always heard that as a parent, there is nothing worse than seeing your child hooked up to a machine or wheeled into an operating room, and now I understand why. Fortunately, his lungs looked a bit better.
As the weeks wore on, Kyle had some good days, during which he was able to walk the dog briefly or play catch with my husband for a few minutes. But he would sometimes then feel worse the following day (or days) and have to be reconfined to his bed. It felt like every time he seemed to turn the corner, something would set him back.
Now, nearly five months in, Kyle is finally starting to feel a little better each day - although he still has to be mindful not to overdo it. In the last few weeks, he’s regained much of his energy, started to fight with his sister again (something I never thought I’d be happy to see!) and started to play actively with his friends again, like any kid should.
He missed a lot of school — and his entire spring baseball season — because of COVID. We are hopeful that he will be able to return to school in person and play baseball again this fall, but for now, we are taking it one day at a time, as there are still so many unknowns surrounding long COVID, which his doctors (whom he still sees regularly) have been frank about. In Kyle’s case, the biggest concern seems to be his now severe and persistent asthma.
Kyle hopes people who hear his story will decide to get vaccinated, if they’re on the fence, and potentially prevent another family from experiencing what we have.
“It's worth it, even though you don't feel good after it, but it's much, much better than being sick for a long time,” he said.