Author: Chelsea D.
Date: September 1, 2023
It all started with my 4 year old daughter. I remember it so vividly— we were walking to pick up my husband from the train station and on the way back, she said, “My throat really hurts.” Within a matter of days, my 4 year old and 2 year old were both sick, diagnosed with RSV. Respiratory Syncytial Virus (RSV) is usually nothing more than a cold in an adult, but it can be brutal for kids—especially young babies. As it turns out, we also had a newborn at home.
Over the next few days, I did my best to keep my two older kids away from our infant son Clark, but it was hard. Within a couple of days, I noticed Clark had a runny nose and a cough. I took him to the pediatrician and we walked out with a nebulizer and an RSV diagnosis. The nurse practitioner noted she heard some wheezing, but nothing overly alarming that albuterol every four hours couldn’t help. As the day turned into night and into morning again, I noticed a worsening. Clark refused to drink and started arching his back and craning his neck, as if uncomfortable.
By midday, I knew something was off—I couldn’t pinpoint it, but his breathing just seemed wrong. I dragged all three kids back to the pediatrician. I was nervous they would think I was a little crazy; we had just been there the day before, but I couldn’t shake the feeling that he had to be seen. When we arrived at the pediatrician’s office, our doctor asked me to feed Clark a bottle; he barely drank an ounce. She laid him on his back and observed his lungs were pulling in when he breathed (I subsequently learned this is called “retracting”). She also noted Clark was breathing fast. Calmly but seriously she said to me, “You need to go to the Emergency Room right now. I’m calling ahead to let them know you are on your way.”
I don’t remember much about the Emergency Room. I remember carrying a heavy car seat with my son inside, having my two older girls hold onto my shirt through the parking lot while tears were dripping down my face. I remember an elderly volunteer pushing me past the Covid lines. I remember the ER doctor explaining his blood oxygen levels weren’t terrible but that he was breathing fast and shallow. I remember everyone was calm but serious, explaining RSV can be a rollercoaster of a virus in babies and can get very bad, very fast. I remember the fear.
Clark was admitted that night. We spent a day in general admit. He was on oxygen and they were suctioning mucus out of his lungs often. He didn’t move, he didn’t eat, his fever was spiking. Eventually, the doctor explained Clark was worsening and they recommended high-flow oxygen, which is essentially a powerful way to get oxygen into the lungs at a heightened rate. A bed became available in the Pediatric Intensive Care Unit (PICU) and they wanted Clark to move there.
My tiny six-week old son was in respiratory distress. RSV is an absolutely scary and wild ride. We would see improvement, then worsening, then improvement again. Clark’s heart didn’t react well to the albuterol, so we had to play with dosages. His blood oxygen levels were stable, but the high-flow oxygen levels were maxed out and his lungs showed signs of pneumonia. Slowly though, he started getting better. They lowered the oxygen flow little by little. At times, Clark didn’t do well on the lowered oxygen, so they would adjust the flow back up again. It was a frustratingly slow journey with many ups and downs, but finally after seven days in the PICU, he was able to go back on regular oxygen and they moved us back to the general admit floor. That night, however, he took a turn again. I raised alarm to the doctors and asked for the PICU doctor to come down to take a look to make sure everything was okay.
It was a lesson in being an advocate for my child, and it’s stuck with me since. Luckily, Clark continued to slowly improve. All said, he was in the hospital for 10 days. It was a scary, hard, soul crushing 10 days that always felt like 2 steps forward, 1 back. For seven of those days, I couldn’t hold my infant son. His first ever smile was not to me, but to a nurse caring for him. Our girls missed their parents for a week and a half, and I had to explain to teachers that the reason for tears at school was that their family life had been flipped upside down. I had neighbors doing my girls‘ hair in the mornings, my mom coming up to stay with us for a week, friends and family sending over meals. Our village of support came out for us.
Clark is now a smiley, happy and healthy 21 month-old boy! Due to his stint with RSV, he has been subsequently diagnosed with Reactive Airways Disease, which is essentially asthma that he may outgrow. Clark has a fantastic pulmonologist (the one that treated him in the hospital!) that he sees every 3-4 months. The first winter after RSV, he had to take an inhaled steroid twice a day and albuterol whenever a cold or virus started. This second past winter, his doctor decided to see how he makes out without the steroid and just with the albuterol as needed. Clark did fantastically with that course, even though we seemed to catch every virus du jour! Though the ordeal was frightening, I look at my laughing toddler now and am so thankful for our little guy—this little boy that was once a 6 week-old fighter.
Even though you may feel like a crazy parent and “it might be nothing,” it’s always better to ask the questions and be sure.
Not having a medical background myself, I always assumed medicine was like math: Here’s problem A, thus this is solution B. But in fact, it’s not linear. Medicine is open for interpretation and discussion, just as much an art as a science. Good doctors will want to include you in the discussions, and it’s okay to ask questions and share your concerns.
First and foremost — sounds cliche — but always go with your gut.
Google what respiratory distress looks like. Retractions can be seen when your child lays down — look to see if their lungs are pulling in air. Babies sometimes arch their backs and crane their necks when they are trying to get more air. You can also count your child’s breaths to know if they are breathing too fast.
Know the nearest pediatric ER and PICU should you ever need them.
Be an advocate for your kids. It’s okay to be involved in your child’s medical care, especially when they can’t speak for themselves.
In times of crisis, give yourself grace. I blamed myself constantly in the hospital for not doing a better job at keeping him safe from this virus. Meanwhile, I was also guilty my girls had to go days without seeing me. As parents we put a lot of pressure on ourselves, and the truth is, it’s okay to not be perfect. I did the best I could in a hard situation. Additionally, I truly believe it’s okay — and maybe even important — for your children to see your emotions and to see your struggle at times. It’s human to feel vulnerable and it’s worthwhile for kids to know that.
Chelsea D. resides in New Jersey with her three children ages 6, 4, and 2.
My favorite thing about being a mom: The full house of both love and utter mayhem.
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