COVID Pandemic Silver Linings for a CF Caregiver

When the COVID pandemic began in earnest, our younger son, who has cystic fibrosis, was not quite 18 months old. He was still quite the novice in the walking, talking and overall life departments. So we were obviously very worried about the potential impact of the pandemic on many elements of his, as well as his older brother’s, development.

On the medical side, he was fairly healthy, all considered. He had spent some time in the hospital in 2019 – a week due to an exacerbation and a few days due to gastrointestinal issues – but we had been mostly lucky for the first year and a half of his life.

When everything shut down, we received a lot of calls and texts checking in on us. In addition to making sure we were all doing well, everybody wanted to know how worried we were about our son and his degree of risk.

Although we now know people with CF are not more at risk for contracting COVID-19, we still want to keep him as protected as possible. And the pandemic continues to be problematic in ways that we likely won’t be able to truly measure for years.

However, I have thought often about the silver linings that we have thankfully been able to experience as CF caregivers over the past two-plus years – silver linings that we hope will allow our son to continue to live a healthy life.

Silver linings

He hasn’t had any exacerbations

Maybe a week or two before everything shut down for the pandemic, we had needed to increase the amount of daily PT treatments for our son, as well as start a round of antibiotics. This had become a fairly normal occurrence, every other month or so.

Although this was manageable, it did put a significant burden on us, especially my wife who ended up picking up most of the extra PT treatments while I was at work. Not to mention our concern about him having to take antibiotics so often.

Since the pandemic started, we haven’t really dealt with anything close to an exacerbation. This is obviously an immense positive in terms of his physical health and his lungs’ ability to continue strong development. But I also can’t imagine the significant emotional and mental stress we would have felt – and that many others likely felt during this time – taking him into the hospital for an extended stay, especially in the early days of the pandemic.

I want to caveat this by saying there are a few fortuitous elements at play here that contributed to our son remaining mostly healthy throughout the pandemic. First, we were in a situation where we could all stay home and together without risking our health. I could work from home; our oldest son (who doesn’t have CF) wasn’t in school yet, and we could easily remove him from daycare. In other words, we weren’t going out, so we weren’t bringing anything in.

Second, before the end of 2020, he became eligible to take a CFTR modulator for the first time. Although it’s impossible to know the true impact of this medication at his age, it is possible his lungs and GI tract are also healthier because of it.

CF became just part of our routine

When people have asked about our younger son throughout the pandemic, I have joked that his routine has become so commonplace – and we hadn’t really experienced any problems – that we’ve pretty much forgotten about his CF. That’s obviously hyperbole, as we make sure he gets respiratory therapy twice a day, his CFTR modulator medicine twice a day, pancreatic enzymes every time he eats and countless vitamins.

However, I can confidently say that his routine has become baked into our days – and, importantly, into his head. We didn’t have to worry about when we would do his treatment or forgetting his medicine because we weren’t going anywhere. There was never a need a to maneuver our routine because we didn’t have any competing activities to worry about.

Now that we’ve been gradually seeing more people again, our older son is going to school and both kids are starting to be involved in activities, we’re not too worried about fitting our son’s CF care in because we’ve established a solid baseline.

He wears a mask like a champ

Of our two kids, our son with CF tends to be more spirited when it comes to pushing back on rules and norms. It can be a bit of an annoyance when, say, he refuses to wear pants or yells at the top of his lungs in quiet settings. But it’s also heartening when you realize that he is facing the adversity of a progressive condition with the potential to greatly modify his life.

He's been that way since he was a baby. So, pre-COVID, we were absolutely certain that getting him to follow the rule for people with CF to wear a mask in a healthcare setting was going to be a Sisyphean task. His CF clinic required kids to start wearing them in-clinic by the time they turned 2.

For us, the mask-wearing aspect of the pandemic was extremely helpful in normalizing the concept for our not-quite 2-year-old. In non-pandemic times, I could definitely see how that learning process might have been exceedingly difficult for him. However, I think it helped for him to see (just about) everybody wearing a mask all the time, especially during the beginning of the pandemic.

At this point, two-plus years into the pandemic, we are still wearing masks everywhere we go, especially in indoor settings where there are a lot of people. So, for him, wearing a mask at his clinic appointments or in any other healthcare setting is just par for the course.

The past two years

None of this is to say the past two years have been easy. They haven’t been. There are myriad aspects of the pandemic that have been crushing for our family and the people we love.

But, with life often being unpredictable, I have no idea what the CF experience would have been like for my son and our family if there hadn’t been a pandemic the past two years. Would he have spent weeks or months in the hospital? Would we be struggling to fit his care into our routines? Who knows? So I am forever going to be thankful for these silver linings.