Wednesday, May 25
"No refills please...."
It's Tuesday. The phone rings. The lady on the other end of the phone explains that she is from "Foundation Care" and she is just calling to see if Madeline needs another refill on her prescription of Cayston.
I pause. Think about this for a second, then explain that we won't know if she needs another refill for Cayston until after our clinic appointment this Friday. I tell her that next week we should have results from her culture, thus tells us if the Pseudo is still there. Then, we may know if we need a refill.
I stand there with the phone for minutes after explaining this. She thanks me and says she will check back that week to see if a refill is needed. I am stunned.
As nice as that lady was, I wanted to call her back and yell at her. I wanted to tell her how much she just put fear back into my mind. I want to tell her to go "climb a tree" because the doctors won't be calling her anyway.
I hope I never have to hear "Foundation Care" on the other line. . I am hoping that the only time I talk to them is to say: "Nope she doesn't need Cayston. She got rid of the Pseudo." I am imagining the matter of factness in my voice, the feeling of satisfaction, and the realization that I don't have to rely on any insurance company's approval to pay for this six thousand dollar medication.
My hope is Friday is "that kind of day."- A "no pseudo kind of day."
My hope is that the week after is filled with a phone call direct for Hopkins saying " The culture is clear."
My hope is that I won't have to worry about what is the "next step." Because after 2 rounds of inhaled TOBI and 1 round of Cayston, there shouldn't have to be a "next step." Madeline should be able to be free of extra treatments and the ability to live a more normal life full of playdates and more outside time.
And so, we visit Johns Hopkins on Friday for our "revisit" to see those lungs are feeling looking, I am just plain hopeful about this visit. Hopeful that she gained weight, is clear of pseudo, and her lungs sound clear.
I can't wait to say to "Foundation Care" ......"No refills please".....