Monday, March 7, 2016

Week 133: Last week

This is the last week that this will be our version of normal.  A week from today, at some early hour of the morning compounded by springing forward, we will head in to the hospital for surgery to place Lemon's G tube. While he's under anesthesia they'll do a bronchoscopy, to take a look at his lungs and get some samples to culture so that hopefully we can at last learn the true identity of Something T. Vicious.  And, because we're still not over Something T. Vicious in spite of over 3 weeks of levofloxacin, they're going to place another PICC so that we can do another round of IV Zosyn.  Between the adapting to tube feeding and the IV antibiotics, we'll be inpatient for a week or so. 

On the one hand, I'm dreading the hospitalization, and on the other hand I know that it is the right thing to do for Lemon's health.  Being on isolation in the hospital for a week will be a trial for all of us, but we have to break the pattern that we're currently in.  Hopefully the extra calories from the tube feeds, plus the clear-out provided by the antibiotics, plus the arrival of spring, will put us in a good place for a while.  We could all use a break from the constant, overbearing presence of CF in our lives.  I look forward to the day in the indefinite future when we're used to the tube feeds, when Lemon's lungs have been clear for a while, when can just do our "regular" care routine and lead our "regular" lives again for a few weeks straight, with CF in the background rather than dominating the foreground.

I will keep it brief tonight.  Papa Bear and I are trying to stock up on sanity for the week(s) to come, so we're indulging in a kid-free* hour to take in the finale of Downton Abbey (no spoilers please!) with some hot chocolate.  Living on the edge, I tell you. 

Many of you have asked what you can do for us next week.  Here's what you can do:  Text.  Email.  Call.  Tweet.  Facebook.  Comment.  In what ever way you prefer, use your devices to let us know you're out there thinking of us.  It will be a long, lonely, trying week.  Oh, and throw a few bucks in the direction of our fundraising team for the Cystic Fibrosis Foundation, so that we can find a cure for this disease already! 

*post-script: not exactly as kid-free as originally planned, but who could resist this guy?

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