When Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking about it. So when we went to the pediatrician later that day and they asked if they should test for both strep and COVID, I said yes to both. Strep because I was certain that he had it. COVID because I wanted to be cautious and seemed sensible.
Ten minutes later the pediatrician walked into the room with a pulse oximeter and I knew, without her saying a word, that Michael was positive for COVID.
Adrenaline immediately kicked in as my mind spiraled through the checklist of things to do. Get Michael home and into isolation in his room. Get his BiPap on and continue to monitor his oxygen levels. Call Tim (who was at work). Get Peter from school. Call Michael’s school. Message Cure CMD (our patient advocacy group) to get latest advice. Talk to the school district’s nurse about Peter. Call Michael’s neurologist and pulmonologist and make a plan if he needs to go to the hospital. Get the rest of us tested (can we even find a rapid test?). Text work and let them know I was taking the rest of the day off. Talk to the school district’s nurse about Michael. Call or text everyone we saw over the weekend (Ugh. Why did we see people?!). Talk to the city health department. Clean and sanitize the entire house. Move Peter’s bed to a spare room (the boys share a room). Text family and ask for prayers. Post on social media and ask for prayers. Oh, and remind myself to breathe.
This is my “go” mode, a crisis mode I have perfected over the years. In it, I’m able to set aside emotion and spring into action, relying on adrenaline to propel me. Blinders engage, and I am only focused on the task at hand. I usually stay in “go” mode until I feel the acute danger is gone. In this case, that didn’t happen until Friday when Michael had gone 24 hours without a fever and it seemed that the risk of serious respiratory issues was over.
Then I crash. My body becomes exhausted when it experiences high and sustained levels of adrenaline. I no longer have energy to do anything. I can’t concentrate on much for very long. I just want to sleep. I called it an adrenaline hangover. I’ve wonder if this is how everyone respond to situations like this or if my body’s reaction is due to the hum of anxiety I operate with on a normal day. Or that the crash is related to my proclivity for depression. Who knows and, frankly, who cares? The cycle for me is unavoidable. I’ve learned to give myself time to rest, heal, and reflect when this happens. So that’s what this weekend has been about. That’s what this blog is about.
We knew the risk in sending Michael (who is not old enough to be vaccinated) back to school this fall. We felt the risk outweighed his mental health need of being around his friends and peers again. We also felt the precautions that our school district is taking would (hopefully) prevent him from getting COVID. We made it five and a half weeks before Michael caught it, most likely at school as positive cases have spiked in this grade. Best laid plans . . . .
As a Rare Mom, I have learned that the only certainty we have in life is uncertainty, so as I reflect on this past week, I’m focusing on what I know for sure.
Our faith sustains us. Our family sees God working through prayer, people, science, medical innovation, and so many other ways. God’s love for us is revealed by His people.
We have a wonderful support network that will respond with a simple ask. Neighbors and friends offered grocery deliveries, meals, lattes, ice cream, and even houses. Our families checked in, offered to come and help, and sent cards and gifts for Michael. Prayers and support were felt from far and wide.
Our medical team is strong, including our pediatrician, the boys’ specialists at Children’s of WI, the Cure CMD community, clinicians, and researchers, NIH researchers, and the vast medical network that has made it possible for families like ours to survive this pandemic.
We will continue to do all we can to keep our family healthy and safe, but in the end there is no rhyme or reason for who gets sick and who doesn’t despite our best efforts. The rest of our family (who are vaccinated) have remained healthy and negative. Another CMD family we know had COVID recently, and everyone was positive (including two vaccinated adults) except for their young daughter with CMD. Several seemingly healthy friends around my age were diagnosed with cancer in the past few months with varying prognoses. Rare disease shows up in any family at any time. This truth may seem to offer little comfort, but it makes me thankful for every healthy day we have. I’m more likely to remain present instead of wasting my time on the unanswerable “Why?” question.
A week into it, Michael is on the upswing. He’s been fever free for several days, and his oxygen levels have remained in the upper 90s the entire time. He’s still very stuffy and congested, which is annoying but treatable. His isolation ends in a few days but he’s been spending some time outside to relieve some of the boredom. We are aware that there can be ongoing effects of COVID in children so we know we aren’t out of the woods yet. We remain hopeful that we are past the worst of it.
It’s been a hell of a week. Now, if you’ll excuse me, I’m going to go nurse my hangover.
