Just now, Papa Bear reminded me that his birthday was this past week. True story! A lot has happened since then. Here are the updates. After some further discussion, we decided to postpone Uncle Jared's visit. At the time it seemed perhaps overly cautious, but from where I'm sitting today (and only a few days later) it seems like unquestionably the right decision. Coronavirus seems to be spreading rapidly, and we just cannot afford to take any extra risks with Lemon's health. I also have this nagging suspicion that Uncle Jared's visit will just be the first in a line of things that we end up postponing until the environment in the world seems safer, but one day and one week at a time.We had our clinic visit on Wednesday. Lemon's PFT's and weight were both good, somehow he gained 2 lb since our last visit which surprised everybody, in a good way. Lemon also did a lung clearance index test, which was the last test for the research study he's been part of since he was born. Kind of a milestone to age out of that one at last.
The other thing that happened is that after the visit, I sent around some messages to the new doctor and the nurse practitioner basically demanding an action plan, and at last I think we finally have one. The new doctor finally responded that he is willing to take Lemon on as a patient (yay!) and also that he agrees with the nurse practitioner and the old doctor that we should do a bronchoscopy. But, to be clear, he favors it as a diagnostic procedure, to see what if anything is growing in the collapsed area of Lemon's lung, as opposed to a therapeutic procedure to clear out the area. Some incidental clearing out may happen as long as he is down there with a tube, but that isn't the primary purpose.
So, Lemon will be having a bronchoscopy on Thursday afternoon. When exactly? Who knows, because it would be far to easy to plan around it if we knew what time it will be happening. We don't get to find out that information until Wednesday. We haven't told Lemon about it yet, on the theory that it would just give him more time to worry about it. We will discuss it with him on Wednesday, maybe once we know more details about what exactly will be involved. The good news is that it will be done outpatient, just using conscious sedation, so we should (hopefully) be in and out of the hospital pretty quickly. Then there will just be the anxious wait until the culture comes back.
Despite the worry over the procedure and the exposure risks involved in even setting foot in a hospital these days, I am really glad that at least, 9 months after this thing should have first been detected, we are finally doing something about it. Once we know what organism is growing down there, we can plan an appropriate antibiotic strategy to treat it, and with any luck avoid a round of IV antibiotics. I'm also glad that we are transitioning to the new doctor. I am sorry to part ways with the nurse practitioner, she is a very kind person and has taken good care of Lemon for all these years. But, having her as our primary care provider was never the plan, and I am feeling good about the choice to be working with a pulmonologist again. Fingers crossed!
