I am not crazy. And I’m not having a panic attack.
That’s what I was telling myself while padded adhesive squares leading to an EKG covered my chest and stomach and I stared at the ceiling waiting for the portable x-ray to be brought to my private ER room. I was torn between believing I may actually have Covid-19 and worrying that I was somehow just making up the symptoms I was experiencing in my mind. The only people who came in or out were wearing face shields and gowns, assuming I was one of the first waves of coronavirus disease patients to rush to the hospital.
It was a Wednesday afternoon in March and, although I live in a large suburb of Atlanta, the general feeling was that Covid-19 was just now hitting our area and the odds of my having it were pretty small. And maybe they were…it was (and still is) kind of hard to determine the odds of a mild to moderate cold being the dreaded pandemic-causing plague we’re all talking about. Our family’s experience, however, taught us a lot about what you can (and can’t) learn from the daily briefings, reported case numbers, and even trusted sources like the CDC who just don’t have answers to some of the questions we’re all asking. This is the story of one of our family’s weirdest months to date.
A Sick Kid
I have four children, ranging in age from 7 to 15. My youngest son, our 7-year-old, has a history of viral induced asthma. And by history I mean he has been previously hospitalized for an asthma attack caused by an “unidentified respiratory virus” that was not brought under control for over 48 hours. He can, quite literally, die from the “right” kind of cold if we don’t pay close attention and treat his lungs aggressively. In the last six months he has had viruses cause pneumonia, probable flu (his brother tested positive for Flu B and he had the same symptoms shortly thereafter), and bronchitis.
So in March, a few days after what would eventually become the last day of school for our district, I paid attention when he began to cough. It was just a few short coughs and he’d been playing outside so I let it go. That night, about 4:30 am, he had a coughing fit, the dry, scary kind that means his bronchial tubes are closing up. At 9:30 am he had a fever of 101.
I took him to our pediatrician as a precaution, just to make sure that he didn’t have anything scary happening with his lungs. His flu and strep tests were negative and our doctor went to go see what she could figure out about how to get him tested for Covid-19 as a person with an underlying condition. Just to be safe. He seemed like he was behaving alright and it was probably adenovirus or another, more common, coronavirus.
While we were there, his temp shot up to over 103, his pulse ox dropped to 89, and he became disoriented to the point that he thought he was at home. Our pediatrician gave him immediate oxygen, called 911, and we were taken to our children’s hospital for evaluation. Before he was rolled away on the stretcher, the doctor got a nasal swab and said she had emailed the state epidemiologist and would let me know what happened with the test.
My son turned out to be alright. His lungs didn’t look compromised on x-ray and after a few hours on oxygen and albuterol we were sent home. I know the drill on how to treat him; we own items like a nebulizer with three separate sets of tubing, inhalers and a few different spacers. I generally have to get the nebulizer out a few times each winter, so none of this was particularly stressful to me.
The Georgia Department of Public Health determined that since he hadn’t been out of the country and we didn’t have known exposure to a confirmed positive case of Covid-19, my son’s sample didn’t qualify for testing.
It probably would have ended there, with me a little annoyed that the state wouldn’t even consider testing him, and my kid on the upswing. But then the next kid got sick.
A Sick Family
My 9-year-old son became ill the next day, complaining that his head hurt, his throat hurt, and he felt really tired. His fever hit at 102.5, his dry cough started shortly thereafter and I kept the nebulizer out for him and administered more albuterol.
Three days after my youngest son’s trip to the ER, my 11-year-old son said his head felt too heavy to hold up. His cough and fever followed the day after that. That same day (now four days after our pediatric ER trip) my husband told me he was exhausted, took a nap, and woke up with a cough and a fever.
The next day my exhaustion and cough began, but I stayed fever-free.
Finally, six days after the first kid fell ill, my 15-year-old spiked a fever with chills, aches and this time nausea and vomiting. My family had been at home from school and work for the previous eight days. The idea that she had a new, different illness seemed unlikely.
That was also the day my husband found out he had been exposed to a confirmed positive Covid-19 case the week before any of us had any symptoms. He managed to get a nearby test, but somewhere between my husband’s nose and the testing lab, it disappeared. We still don’t know what happened with that.
A few more days passed and most of my family seemed much better. We’d had rounds of different people shivering under blankets, people with headaches, our poor daughter who couldn’t eat anything without getting sick, and a general sense of exhaustion that seemed to hang over everyone.
While most of our world was struggling with how to entertain kids newly home from school all day long, we were all perfectly content to hole up in our house for a little while. Some days would feel better, like a person had turned the corner, and then the next day the same kid would need a nap. Or two.
By eleven days into our strange odyssey, only my daughter and I still had what we would call interfering symptoms. I felt like I couldn’t take a deep breath, like in those last days of pregnancy when there’s a baby squishing your lungs. I kept coughing throughout the day and would wake up at night having coughing fits, trying to find ways to sleep sitting up. My daughter was still sick to her stomach, with cramping, headaches, and body aches all over.
We found a drive-up testing site that charged $185 a test, but we agreed to pay it because they would approve us for testing. We decided (perhaps unwisely) to get two tests for the two of us who still felt the worst (my daughter and me). And now we would just wait.
Between having my test and receiving the results, I went to the ER for myself. My heart felt like it was racing all day long and I began breathing more heavily than normal. We have an oximeter (that thing the doctor puts on your finger to measure your blood oxygen level) that also measures your heart rate. I put it on and watched my heart rate (usually in the 50s or low 60s while sitting) jump from 67 to 104 to 83 without my moving a muscle. That seemed abnormal.
I messaged my ICU nurse friend and asked what I should do for an irregular heart rate. I drank some water. I decided to lay down to see if that helped. I fell asleep almost immediately with the monitor still on my finger and my husband walked in about 20 minutes later to find me with a pulse ox of 88 (that’s not good). He woke me up and when I sat up, my heart rate jumped into the 130s, I felt dizzy and nauseous all at once, and I was afraid I would pass out.
My husband told me to call a doctor. I said I probably just needed water and that I’d get some after I went to the bathroom. When I saw myself in the mirror I got scared. I was white. I mean, WHITE white, like grayish white. And still dizzy. And nauseous. And my heart rate was still going nuts. I walked back out to find my husband and thought, “I can’t have a heart attack here in the living room. That would traumatize the children.” And so we went to the ER.
After poking and testing me it turned out I was…fine. I got fluids and my ER tests came back ok and my heart rate eventually returned to, if not normal, at least a consistent pace. My breathing was still kind of shallow, but my oxygen levels stayed up, so that was also alright.
While I was there, my Covid-19 test results also came back: negative.
Huh. Even the drive through doctor who phoned with the results seemed surprised based on my symptoms and offered to test for other diseases (for another $300 a test).
So, good grief, what was wrong with us? Did we all just imagine all of this? AM I crazy?
The ER didn’t have any answers, and basically asked me to please leave since I wasn’t about to die. They gave me an albuterol inhaler to use as needed but didn’t give me any instructions, and told me to email with my insurance information. Which was all fine, but unnerving. What if I didn’t have insurance, or already know how to use an inhaler from having to learn for my kids?
The next day my daughter’s test came back negative, too.
I waited another entire week, assuming we did not have Covid-19, but still confused by our experience. My coughing was slowly dwindling, but not quite stopping, and my daughter was still occasionally throwing up when I finally called the pediatrician again. I was getting a little worried about how pale my normally bubbly teenager looked and whether or not she was keeping enough fluids down, two weeks into whatever this was.
This time my pediatrician assessed for flu and strep, which were negative, and also ordered a more extensive panel to test for approximately twenty different viruses and bacteria that can cause gastrointestinal disease.
She was negative for all of them, including the adenovirus that was the most likely culprit for an entire family having concurrent illnesses with both respiratory and gastrointestinal symptoms.
So What? Your family was kind of sick.
The “so what” is this: there are currently very few absolutes about both this disease and the ways in which we are fighting it. Those facts are causing extensive uncertainty in our nation and our homes and it’s making us a little crazy.
Every physician we talked to (and there were several) had slightly different ideas and information. Over the course of the 3 weeks we spent trying to figure out what, exactly, we should do with our sick people, we spoke with the CDC, the Georgia Department of Public Health, three different hospitals, one urgent care, and three of our private physicians.
We found, for the most part, dedicated professionals who just didn’t know the answers to questions like:
If it is Covid-19, how long are we contagious? We have immuno-compromised relatives that we help and need to know their risk level from us. (Answers ranged from “3 days after symptoms end”, to “3 days after fever ends”, to “14 days after the start of symptoms”, to “7 days after start of symptoms.”)
If it’s not Covid-19, what the heck is wrong with us? We haven’t had contact with other people for days/weeks. (Answers ranged from “I don’t know,” to “why does it matter to you”, to “what are you going to do differently,” to “probably adenovirus,” to “I can probably tell you for $300 more dollars.”)
What symptoms, exactly, are the scariest, that we should seek treatment for? Because I went to the ER short of breath and with a racing heart and then felt silly when my heart calmed down and the ER physician’s assistant suggested maybe I was having a panic attack. (Answers ranged from “shortness of breath,” to “fever and uncontrolled dry coughing,” to “don’t go to the hospital unless you have to,” to “we’re not seeing sick patients right now so go to Urgent Care for anything that worries you.”)
Even when I asked, “how likely is a false negative” the answer changed from “about 10%” to “30% or more” in the last week or so and depending on which doctor I asked.
We were trying to stay away from doctors, keep ourselves from being around others, follow all the CDC guidelines, and treat ourselves at home and we still feel like we got it wrong some of the time. Here’s what I would like people to take from our story.
Our pediatrician, after the last test results came in, said that in her opinion it was more likely that we had two false negatives from a drive through pop-up lab than that we had a non-Covid-19 illness or illnesses. She was the same person who assessed my 7-year-old nearly a month ago and looked at my pale and weak 15-year-old almost three weeks later. She feels based on her clinical assessment of two of the six of us that we did, in fact, have Covid-19. If that is the case, and honestly at this point I hope it is, we have survived and are going to be fine.
In fact, far and away, most of us are going to be fine. We need to be diligent in this season of trying to slow the spread, but most of us are going to recover without a lot of fuss if we do get it.
I will say that our experience seemed more like a mild/moderate case of flu (coughing, aches, chills) crossed with mono (exhaustion, seems to last forever) rather than really severe flu (H1N1 in 2009 hurt my joints so much I teared up).
Or maybe we got two to three different viruses all at once while isolating at home and our symptoms mean nothing.
That is, of course, the challenge. We just don’t know who will have what reaction at this point and how to tell the Covid-19 cases from the non-Covid-19 cases unless you’re really ill or manage to get a positive test result.
It is scary but, freaking out about it is not going to help anything.
2-Take the daily briefings/case counts with a grain of salt
I do not believe that the government is lying to us, hiding something, or has an ulterior motive relating to this disease. Dr. Fauci is my hero. There may be levels of incompetence or poor planning, but no one we spoke to seemed to have a nefarious purpose in how they’re counting cases or deaths or following up with Persons Under Investigation. They just don’t know. Testing has been incredibly hard to get. Even when you do get tested, it could be wrong if it is negative (a positive test DOES mean that you’re positive, however).
No one is trying to pull one over on the American people, it’s just legitimately hard to figure out. A new disease that can cause no symptoms in one person and death within the “same” type of person is hard to pin down. That is going to take time.
The numbers we have are just that: the numbers we currently have. The conclusions made from those numbers need more data to be accurate and only time and intentional collection of that relevant data will help. For instance, the number of cases in our house could be anywhere from 0-6. We honestly don’t know.
3-If you get sick, assume you have Covid-19
When I was in the midst of the worst of all of us feeling bad and fuzzy and ill, our friends and family generally responded with some version of “but why do you think you have it? You don’t know anyone with it, right?”
I get where they were coming from, but I think that’s the wrong question. At this point in our nation, no matter where you live, the question you should ask yourself, is why are you so sure it’s NOT Covid-19?
A lot of people are not going to know they have it. If I lived alone, for instance, my lack of fever would have prevented me from suspecting Covid-19 based on the stories and CDC statements at that time.
If my daughter were a few years older and in college, she would have assumed she got a stubborn stomach bug in the dorms before heading home.
Even if we just had one kid, I’m not sure 3 sick people (2 parents and 1 kid) would have stood out to me as much as all 6 of us getting sick in less than a week. That has literally never happened to us before–there just aren’t that many viruses that we all have equal lack of exposure and immune response to. Even when a kid gets something bacterial like strep throat, the most we’ve ever had with it at once is three people at a time.
If we all just assume we have it, we will be more careful with those around us.
As for my family, we are still…uncertain.
I suppose we had Covid-19. That would make me feel better about my more vulnerable youngest son. If there is another virus currently circulating that can take him from happily running through our yard with the neighbor kids to needing oxygen in less than 18 hours, I find that terrifying.
But I don’t know for sure and I may never find out with any certainty.
In a few weeks to months, blood tests that look for antibodies to this particular virus should be available, but those will most likely go to health care workers first (and rightly so).
I think that uncertainty is what frightens all of us the most right now. There’s just no way of ensuring the safety of ourselves and our loved ones and many of us have new worries related to jobs and schooling on top of it all.
And we can’t even hug each other and say “I’m here for you” while we’re in this place.
It’s up to all of us, no matter what experiences we have in this uncertain time, to try to hold it together. To try to be nice to those in our homes and in our cities. To do the best we can to uphold our neighbors by following our states’ guidelines and not coughing on others and touching all the vegetables at the grocery store.
We can do this, but we are all going to just have to sit with our uncertainty and all of the uncomfortable feelings that produces and not, really, have a great explanation for why this all happened. And that is a hard place to be. Being nice at least makes it easier for everyone.