Monday, November 9, 2015

Week 116: Shake, rattle, and roll

As of a week ago, Lemon had developed a bit of a cough.  He was mostly coughing at night, although sometimes during the day as well.  We upped his vest treatments to 3 times per day to see if that would shake the cough out of him, as it has for the previous two coughs he's had this fall.  This one seems to have been made of sterner stuff, and he was still coughing on Friday.  He seemed more or less his usual chipper self, but the cough was there and it sounded "juicy," as our nutritionist at the CF clinic describes these things.  So, after some hemming and hawing, I called the clinic to request antibiotics.  I wasn't eager to do it, since antibiotics come with their own problems and every use could increase the chance of developing resistance.  But, with a cough lingering for 5 days, it was time. 

We started the antibiotics on Friday evening, and as of today the cough is mostly gone.  So, now after a full week of 90 min/day in the vest plus 3.5 days of antibiotics, we seem to be back on top in terms of pulmonary stuff.  Of course, we still have 10 days of antibiotics to go and they have taken their usual toll on Lemon's delicate digestive system, resulting in really yucky poop and an incredibly painful diaper rash.  It's also thrown off our usual system of giving all of Lemon's vitamins and supplements, because the antibiotic which has to be given twice a day with food can't be given in the same meal as his multivitamin, or his iron, or his probiotic, which we're supposed to increase to twice a day when he's on antibiotics.  While it may sound like not a big deal (and in some sense it isn't), it means that nothing is happening at the time of day when it's supposed to, which just increases the chances that we will miss some doses of various things.  It's not the end of the world, but it's not exactly ideal, either.

While all this was humming along in the background, I attended our CF center's annual Family Day on Saturday (video available here).  I brought Lime with me, and he was definitely the star of the show.  I do not exaggerate when I say that I had a line of people next to me offering to hold him for me.  He was remarkably well behaved and took a long nap during the keynote presentation by Dr. Michael Boyle, Senior Vice President of Therapeutics Development at the Cystic Fibrosis Foundation.  There's a lot of great stuff coming through the pipeline right now, from Vertex as well as other companies, and I continue to be very hopeful that before Lemon hits his teens there will be one or more good drugs available to help him. 

Beyond getting an update on the state of new therapies, the real highlight of the day was getting a chance to catch up with other CF parents.  As all parents know, having young children can be very isolating.  Add to that having a young child with a rare disease, and add to that having a young child with a rare disease who specifically can never be in the same room as other people with the same disease, and you have a recipe for feeling like you're alone in the world.  The instant camaraderie, even with CF parents that I'd never met before, was a huge source of comfort, and we're all hoping that we'll be able to set up some sort of recurring gathering more frequently than once per year. 

This week and next are likely to be rodeos--tomorrow is Lemon's clinic visit, Wednesday is Lime's 4 month (!!!) check up, and Friday I'm going to the dentist.  All during business hours of course, so who knows exactly when I'll actually do my job.  And then at the end of next week, I'll be flying solo as Papa Bear heads to a conference and Opa and Nona take some well-deserved R&R in the windy city.  And the week after that is Thanksgiving.  Let's do this, November!

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