Monday, February 29, 2016

Week 132: Leap

I made a minor error in my posts from Weeks 130 and 131, which I would like to take this opportunity to correct.  I mistakenly referred to Lemon's latest malady as "Something Vicious," omitting its middle initial, T, as in "Truly."  We finished up our 12-day course of levofloxacin on Thursday, and Lemon was pretty much back at baseline, no cough or runny nose.  We were (extremely) cautiously optimistic.  We caught our breath on Friday, and good thing, because by Saturday it was clear that Something T. Vicious was still with us. 

I ended up calling for more levofloxacin on Sunday.  I had thought about waiting one more day, but two things swayed me.  First, Lemon seemed to be getting distinctly worse as the day wore on, and second, because if you call the clinic after hours or on weekends, you get to speak directly to a doctor within 10 minutes.  Compare that to the quality weekday experience, where you speak to a receptionist, then a nurse calls you back, invariably at an inconvenient time, then you tell the nurse what's up.  Then the nurse goes off and talks to a doctor, and then calls you back, inevitably at another inconvenient time, and reports to you what the doctor said.  I'll take option A, thanks.  In any case, in addition to being a better patient experience, calling on Sunday was definitely the right decision medically.  Lemon really needed those antibiotics, and even in spite of them he coughed all night last night.  His spirits seem bright enough today, though, and although his appetite has been basically nil, everything that we've put in has stayed in--far more than we can say for our first encounter with Something T. Vicious.

This latest illness has made the issue of the G tube much more pressing.  We continue to be locked into this vicious cycle of no weight gain/respiratory infection/no weight gain, and we need something to break the cycle.  After talking to several different members of Lemon's care team, it's clear that everyone is on the same page--we've got to get that tube in ASAP, and try to get some calories into Lemon so he has something to use to fight off infection.  Of course, it's a bit of a Catch 22, because he needs to be cleared of this infection, or at least at his respiratory baseline, in order to undergo the surgery.  We've decided that we need to take advantage of whatever window this round of levofloxacin gives us, and schedule the surgery either for just before the course ends, or failing that, right after it does end, which means sometime in the next week or two.  I'm hoping we'll get a date fixed in the next day or so, but this one "minor" procedure on one little patient takes coordination of about a dozen medical professionals.  Meanwhile, we'll do an experiment to find out how long one can sustain oneself on nothing but Ensure Clear and strawberries...

One incredibly powerful thing that I did this week was to have coffee with another CF mom from our community who has 3 year old fraternal twins, both with CF (talk about perspective!).  One of her twins sounds so much like Lemon, at least in terms of relationship with food.  That little girl got a G tube about 2 years ago, and although the adjustment to the tube feeds was a big challenge, they've seen a great payoff both in terms of weight gain and lung health.  So I felt very encouraged, to know that there is hope and it is possible to break out of the loop that we're in, and that the tube may get us there.  It's also amazing that this CF mom is a woman that I've met in person only twice before, and briefly at that. Yet, as soon as we sat down at our little table in Starbucks the connection was deep and immediate.  We're living versions of the same life, on opposite sides of the isthmus that divides Madison into East and West.  So, at our third meeting, it felt like we'd known each other forever--we laughed, we cried, we enjoyed Lime's sunny little smiles, and we shared our hope for a better future for our kids and for everyone who wakes up to face CF every day.  

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