I still remember it as if it were yesterday — the door opening as two individuals were suiting up in full yellow and purple personal protective equipment (PPE). I would have never imagined the role Kinley’s cystic fibrosis care team would take on in our lives.
It has been four years since the day when we first met Kinley’s CF care team and our social worker. She handed over this huge “Welcome Bag” from the CF Foundation, filled with things we would need as new CF parents. I remember laughing about it on the way home — in the midst of the tears — as we were still in shock from the diagnosis. It seemed bizarre that at our initial meeting, we received devastating news and a Welcome Bag to this community. But in hindsight, it was fitting for what our journey would be like with our new care team.
From that moment on, our team, which consisted of a nurse, a social worker, two pharmacists, a dietitian, a respiratory therapist, and a pulmonologist, became our lifeline to surviving our CF journey. The first year of life after receiving the diagnosis, we had a clinic visit every month for the first five months. It was very routine. However, around month six, Kinley cultured Pseudomonas for the first time. From there we were taught how to get specialty medicines, from the specialty pharmacies and through our insurance. We learned how to get all the equipment and how to administer the meds using the new devices. If we had any questions regarding anything, our team was always there to answer every single question asked.
That first year of Kinley’s life really instilled the trust I would continue to build with her care team. As Kinley continued to grow and get older, we started to notice that her main CF issues came from her sinuses. I found this to be tough. As a mother with a growing toddler — especially one that also attended daycare with her older sister — how can you possibly tell the difference between common toddler germs, colds, or something that needs attention due to her also having CF.
This is where her care team came in (once again) to save the day. I began to write to them through our patient portal each time Kinley would get to the point of sounding like she needed help fighting whatever sinus issue was rearing its ugly head. Our nurse would then respond with follow-up questions before passing my concerns along to Kinley’s pulmonologist for guidance. I never once felt like I was overreacting regarding the situation. Honestly, it was quite the opposite.
The care team listened each and every time, even thanked me for writing in with my concerns. From there, we’d address the issue, discuss our options, and ultimately Kinley would end up on a round of antibiotics.
In the past year, Kinley’s issues continued to get worse, landing her on antibiotics more often than not. It was at that point when we had to put our heads together on our options and next steps — this included increasing treatments, introducing new oral meds, as well as introducing two new inhaled medications. The care team relied on my feedback as to if and how those treatments were working. We ended up agreeing that Kinley should have a CT scan and, ultimately, sinus surgery. The ear, nose, and throat doctor who performed the surgery said, “It was impressive what he was able to get out of Kinley’s sinuses.” This was another validation that we, as a team, had made the right decision.
It’s crazy to think back to the day when the door opened and I saw two people walk in covered in PPE and looked as if they were about to perform surgery. From that point forward, a genuine relationship and trust was built between myself and that team. They’ve taught me that “mom gut” is a true thing and to listen to it when I feel like something isn’t right. They are the experts, but the parents are the ones that live through this disease day in and day out. A true CF journey requires the person with CF, the care team, and the parents to continue to win against the disease.
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