Thursday, April 16, 2015


It has been a whirlwind month for us! As I mentioned in my last post, Drew had been struggling with an increased cough for several weeks prior to the decision on March 24 to start him on a course of IV antibiotics. The goal was to try to kick whatever is going on with this increased cough, lack of appetite and subsequent weight loss. We started his IVs on the 24th and by last Tuesday, things weren't much different. He's not presenting with a typical CF exacerbation type cough that is constant and relentless, but rather is having irregular coughing fits periodically throughout the day or week to the point where he is gagging and throwing up. He can go 2 or 3 days without a cough, and then out of the blue will wake up in a coughing fit, or have one in the middle of the afternoon at school with little warning.
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!