We had a lucky break this past week. I'd asked our nurse practitioner how to go about getting a second opinion from our new CF doctor, and she sent me a message encouraging me to do it and telling me exactly what words to say to the scheduler to facilitate the scheduling of such an appointment. So, I called the scheduler, said the magic words, and...well, the concept of a second opinion had apparently never been raised with her, as such a circumstance has never before arisen at our hospital. Or something. In any case, she said she was unable to help me and would have to consult with the nurses about what to do. Suffice to say I was annoyed.
But, I was too hasty. The nurse called me back shortly thereafter, and I once again explained the situation and said the magic words, which were at least comprehensible to the nurse. Then, she started looking at the new doctor's schedule and started to say something about him being booked out quite a way. But, as she was scrolling through his schedule for May (!) another nurse came into the room and told her that the doctor had just had a cancellation that very afternoon, and could Lemon and I come in then? Yep. We sure could. I cancelled all my afternoon plans, pulled Lemon out of school, and off we went.It was so worth it. The new doctor is fantastic. He did a good job of not actually rolling his eyes while looking at the X ray from June and hearing that no actions were taken at that time. Instead, he focused on what all the latest research says, about how important it is to intervene aggressively in kids to preserve their lung function, how FEV1 isn't an accurate measure of what's going on inside the lung, especially in kids who haven't perfected the technique yet. In summary I was very impressed by his knowledge and attitude. So, henceforth the new doctor and the nurse practitioner will be trading off visits with Lemon, but the new doctor will be at the reins, so to speak. Finally, after almost 4 years, we will have a doctor that I trust in charge of Lemon's care again.
So, in the mean time, I am just waiting to hear what our intervention plan is going to be. Most likely, a course of oral antibiotics, and probably some more increased airway clearance to help the antibiotics do their job. But, for the first time since June we will actually be doing something real to treat whatever has been going wrong since at least then. And that, my friends, feels like progress.