Last Tuesday was the day we were going to pull the PICC line but decided to keep it in in case we needed to try different antibiotics to see if he might respond differently. We went back to the doctor and together decided to try an oral steroid for 5 days as he sometimes responds to that better than an antibiotic because of his airway abnormalities and trachealmalacia. He had another coughing fit on Wednesday evening, and then was cough free through Sunday but work up on Monday morning having another coughing it. After some emails back and forth with his doctor, we decided to wait a few more days to see if the steroid had actually worked and or if it would be necessary to restart a different IV antibiotic. He hasn't really coughed much over the past three days, maybe a little more than his baseline, but nothing too significant.
This is the really hard thing about CF, for me anyway. It's never really being sure if we're out of the woods, in the clear, well. Is this slightly changed baseline his new baseline? Does the benefit of trying more medications and other treatments to try to get rid of symptoms outweigh the risks of those harsh drugs and the time that it takes us to implement? Without having a CT scan, which comes with its own risks, we aren't really sure what kind of lung damage is taking place, and even if we knew, there really isn't much that we could do differently. I suppose we could be even more aggressive, whatever that means. Just the thought of having more to do makes my head hurt. There seems to be such a lack of evidence on the "best" treatment or combination of treatments for this disease. We are always making our best educated guess, with the guidance and support of our care team, but we just never know. It's disheartening.
We decided this morning that we will pull his PICC. He no longer has symptoms that we would necessarily treat with IVs, and there are risks associated with having a PICC in (bloodstream infection, for example). He's going back to the doctor on Tuesday of next week, exactly 4 weeks after our special #CF1Day event took place and this whole series of events started. We really have come full circle. If you have a positive thought to throw our way next Tuesday, we will take all the support we can get!