Every week, I think, "Wow, what a week." But this time, for real, what a week. Most importantly, before I say anything else, please take every precaution to ensure your health and the health of others, especially those who are made more vulnerable by age and underlying health conditions. I know it's no fun, believe me when I say that all of us in the CF community are used to making these hard choices, but these measures are the only things that we as a group can do to protect ourselves from a serious virus against we have no immunity, no effective medicines, and no vaccine.So, stepping back in time a few days to when one could still leave one's house, Lemon had a bronchoscopy on Thursday. He handled the whole thing remarkably well. We had to skip his overnight feed and stick to just clear liquids during the day, which was tough since he actually did get hungry (!). We were told to get to the hospital at 1:15, which we did, and then waited in the pre-op room for a solid 2 hrs before anyone came to do anything. By the time we'd signed the consent and gone through all the other preliminaries, it had been almost 2.5 hours between when we arrived and when he went back for the procedure. That's a long time to wait as an adult, never mind a 6-year-old, although he was happy about being allowed to watch a lot of TV.
The procedure itself was quick, and was performed by Lemon's new doctor. He was happy with how it went and said he got a good sample from the area of Lemon's lung that has been the focus of so much attention of late. He anticipated that it would take until Monday to get the results of the cultures back, and that he would call me once they came in with a treatment plan. Then I hung around at the hospital for a further 2 hours waiting for Lemon to wake up enough to be released, and we went home via McDonald's
where he got a much-deserved Happy Meal. I have never seen him eat so much so rapidly, I think. So, it is reassuring to know that he does sometimes get hungry.
In any case, after that, the world kind of came to a grinding halt. We managed to get ourselves vaguely organized before a series of announcements that school would be closed effective Wednesday, just kidding Tuesday, just kidding as of right now (ie Sunday). So, now we are scrambling to figure out how we are going to get work done, teach our kids something, stay healthy, and stay sane for however long this next phase of our lives is.
Just to sort of top things off, Lemon has a really bad cough. It started on Saturday, but has been progressing steadily since then. I spent all day glued to my phone hoping for the call from the doctor, but it never came. I'm guessing the clinical lab may be a bit overwhelmed and thus our culture results are delayed, but we really, really need them. With a cough like this I know we need to intervene soon. We have Cayston on hand, but if that isn't the best drug to fight whatever has been living down there in Lemon's lungs, I'd rather start with the right one. And soon.
Be well, everyone. We may not be seeing you for a while but we are thinking of all of you every day.
