Monday, September 28, 2015

Week 110: Falling is like this

On Wednesday, Lemon and I headed over to our clinic for his appointment.  I was glad that we had made the extra appointment, since his cough had gotten more frequent/productive since I first started hearing it.  One of the great advantages of my new job is its flexibility: I can chose which 40 hours each week I want to work, so I don't have to use time off to take care of what needs to be taken care of for our little family to operate. That said, I did have a noon call scheduled with my boss, but I was under the delusion that this would not be a problem since our appointment was at 10.  To my frustration, we were kept in the waiting room for over half an hour.  Not only is it really difficult to keep a 2-year-old entertained in a waiting room for that long, but it is a direct violation of CF Foundation guidelines: CF patients are never supposed to be in the waiting room at all, due to the risk of picking up an infection from other patients.  While I'm very happy with our clinic in general, this is one area where they consistently let us down and they will be hearing from me about it!

Once we finally made it in, Lemon got weighed, and we learned that he has not gained any weight at all in the last month.  This wasn't a huge surprise given how marginal his eating has been, and actually I was a little surprised that he'd managed just to break even.  But, he grew a bit taller so his BMI has dropped, which is really not the direction we want to be heading.  So, we had a really long conversation with the nutritionist about what we're offering him and when.  To make a long story short, we're doing all the right things, and it's up to Lemon to take us up on what we're offering him.  That's kind of the answer I expected although it's frustrating because of course his willingness to actually eat is the one parameter over which we have no control!

After the nutritionist, we saw the nurse practitioner.  She listened to Lemon's lungs and we talked about his latest symptoms.  She agreed that he definitely didn't seem "sick," as he has in the past when he's had a cough like this, but nonetheless, any increased cough in a CF kid is worrying.  We agreed that it wasn't quite time for oral antibiotics yet.  Instead, we made a plan to increase his vest treatments to 3 per day instead of the usual 2.  We also decided to double his Zyrtec dose, in case the increased cough was due to more allergies that weren't being covered by his regular dose.  We had a quick chat with the respiratory therapist and the clinical study coordinator, and then we were headed home and I was "only" 15 minutes late for my phone call.

We implemented our new treatment plan beginning on Thursday.  90 minutes/day of vest treatment is a lot.  Good thing YouTube has a seemingly limitless quantity of toddler-appropriate videos. Amazingly, our treatment plan seems to have worked (knock on wood!!!).  The cough is basically gone, taking the runny nose with it.   Tomorrow we're going to go back down to two vest sessions/day so that Lemon has time to go to school, but I think we'll keep up the increased Zyrtec at least through the end of the week, and then see where we are.  This is the first time we've ever managed to achieve a reduction in cough without antibiotics, which is exciting.  Now if we could only achieve something resembling normal eating, we'd be getting somewhere!

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