A story from the trenches (2015 NACFC - Infection Control Guidelines Session)

I remember the day a nurse walked into my sons room in the NICU in a gown and gloves, before we ever knew what cystic fibrosis was, before our official diagnosis. I remember feeling like something must be wrong with him if the nurses wouldn’t care for him without wearing a gown, gloves and a mask. I came to learn that those measures were precautionary, meant to protect him.  I came to wonder so innocently what exactly it was that we were protecting him from. Shortly thereafter, I learned the harsh reality of this disease.

Drew is 5 now, and I want to share with you what it feels like to live with CF and the ever-present threat of a new infection. The anxiety of bringing my son into clinic is great. We put on a mask before we exit our car in the parking garage and we push the buttons on the elevator with our elbows. My mind is racing as we stand in line at registration between two families that I know from the CF community. Immediately after we sign in, we are roomed for infection control protection. Its such a relief to be in there. I trust that the room that we are in has been cleaned before we are in there because I trust my care team, though no one explicitly tells me what has been done to ensure my sons safety. As the mother of a young child, I wonder if they’ve wiped down every button that he finds, the floor that he will inevitably be on at some point because he is a 5yo boy.  I worry about how the acquisition of a simple, easy to treat bacteria will change our treatment plan, how it will impact our schedule. I wonder about how we would handle the news that it wasn't a simple, easy to treat bacteria. I wonder what it would feel like for something to just remain the same. Where do I get to share my concerns? How can I join the conversation on how to make things better?

I want to tell you about my struggle with this as a mom, a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones, for my son with CF, for my other kids, for my marriage, for our life. The information that I receive from my clinic is just one piece of what I use to shape my opinions and make my decisions. Patients don’t often see the slides that Adrienne just shared, the profound impact that infection control measures can have on outcomes. Patients don’t always know that a special negative pressure air filtration system has been put into place in their clinic, and if they do, the clinical benefit that is being recognized. They see more limits placed upon them, more boundaries that they are forced to work within. How might we change that? If we can both contribute, we both learn more.

When I Google Infection Control in CF, my options are to read an 80+ page document from the CFF, some outdated journal articles,  or a handful of blogs with information varying from totally in line with to totally against the CFF recommendations. To be clear, i’m totally in line with the recommendations. Knowing that we have data on what can help to reduce the spread of bacteria which ultimately translates to a higher quality of life for my son is good. Understanding how it’s being implemented and learning together with my care team where we can improve would be better.

For our family, we've identified priorities and built life plans and work plans and treatment plans around them.  And with an upcoming appointment or new test results hanging in the balance,  I wonder how our priorities will have to shift, who will be disappointed, how we go forward.

It could be something small, easily treatable, that he acquires next. My heart aches when I have to break the news that we have a new medication. I'm feeling guilt for adding to an already overflowing schedule. I'm thinking about the 5 phone calls over two days it will take to coordinate the arrival of the medication to treat it, and how I will have to put the daily school report from my kids on hold due to an untimely callback despite my best efforts to coordinate this while they are at school.  I feel shame from having to cancel volunteering in my daughter's classroom or miss a field trip. I'm so disappointed that he is so disappointed that I have to change our sport schedule so that we can add just one more thing to our day. And I immediately wonder what I could have done differently. While I know its almost impossible to ever know how a bacteria was acquired, I wonder. What if I had made a better effort, done something differently. These are the things that are going through my head when we go in for an x-ray and the technician isn't wearing her contact precaution gear. This is what I worry about when we have to go into the PFT lab, having read the research available on infection control that seems to indicate that most outbreaks of infection have happened inside of that PFT lab. These guidelines certainly limit the spread of infection, but they don’t eliminate. I don’t want my son to be part of the next outbreak that we are reacting to.

I have to carry the weight of the risk, even if its a low risk, against the impact on my life. This is the constant struggle of a CF mom, rebalancing of priorities, trying to normalize our life thats far from normal. There is almost always more to do and never more time to do it.

If we have information available on how to limit the spread of infection in our clinics then we must take action to implement. Where you live and what you know should not determine whether or not you survive. We have an obligation - you in this room, and me, and the folks who might be watching this livestream - we have an obligation to do all that we can, because my sons life depends on it.

When I recently returned home from short trip away from my family, it was the middle of the night and I was exhausted. As I always do, I went in to the rooms of my sleeping children to kiss them goodnight before going to bed myself. As I pulled up the covers and touched his sweet forehead with my lips, I could taste cystic fibrosis on my son. He was sweating in his Toy Story pajamas, and a little crust of salt had formed around his hairline. Its this. Its the simple kiss on his forehead that reminds me that he might not be here forever. Its the cabinets full of medical equipment and the medication nestled between the wine and chocolate syrup in my fridge that serve as a constant reminder that despite my best efforts CF is not something that I can control. I implore you to do what you can with what we know. Lets take the evidence that we have now try to get ahead of whatever might be coming next.