Monday, December 8, 2014

Week 68: Too little

We had a truly epic check-up at the CF clinic on Friday.  I thought that I had gotten used to them, but maybe I was wrong, because this one felt like it took all day and really sapped all my energy.  Objectively I think we were there for about two hours, which really isn't that different than usual, but it sure felt longer.

We started with a 4th year med student.  I work at an institution of higher education (a medical school in fact).  I am a total believer in training.  But when she walked in as the first person in a long line of people that I knew we would have to see that day, all I wanted to say was, "Can't you see that I'm locked in this tiny room with a toddler who is getting closer to a meltdown by the moment?  Go get the real doctor!"  So, I tried to be patient and answer her questions, knowing that we would have to go through everything again once Lemon's real doctor showed up.  And, honestly, I could see what the training is for--she took a really lousy case history.  Her main question was "Is there anything else that I should know about?"  Which she asked after every single thing I said to her.  I managed not to throw anything and refrained from giving her real-time feedback.

Then our real doctor showed up.  The good news: in spite of two illnesses that have required antibiotics since last time we were in, Lemon's lungs continue to sound great.  The bad news: his weight gain is off.  Perhaps it's not surprising given the illnesses and how active he is now, but it's still disheartening.  His height and head circumference are still right on track with his growth curve, but that all-important weight isn't keeping up.  He's down to the 10th percentile for weight now, which is just not where we want to be.  We're increasing his enzyme dose and we came up with a few more ideas for squeezing yet more calories into his smoothies.  As Nona correctly pointed out, pretty soon he'll need a knife and fork to eat the smoothie.

After the doctor, and the nutritionist, and the clinical study coordinator, we had a quick visit with the respiratory therapist to talk about getting Lemon fitted for his first vest.  The vest is basically a mechanical device that will take over the chest physical therapy that I've been doing manually since Lemon was diagnosed.  Over our next few visits, we'll get to look at the test models that they have at the clinic and make a decision about which brand to go with.  I learned that, much as realtors are not allowed to talk to you about the school districts in their town, the respiratory therapist is not allowed to tell you which brand of vest she thinks is best, even though she clearly has a preference.  It's so frustrating not to be able to tap into that knowledge--she's been working with vests for decades, but instead of my being able to access her expertise, I am supposed to visit the company's websites, and call their customer support line to talk to them, and make a decision based on that.  How does that make any sense?

After the respiratory therapist, we just had the nurse to do the throat culture, and then a quick set of chest x-rays.  Then home to relax and think about more ways to get calories into our child.  The timing is particularly bad, because he seems at long last almost ready to transition away from the smoothies that have been the staple of his diet for so long and on to more "adult" food.  So, not only do I have to think of new solid foods that he might want to eat, but I have to figure out how to get enough calories into those foods that he'll actually gain weight.  Because his weight gain was off, I only have 8 weeks (instead of 12) until his next clinic appointment to figure this out...and tonight he had a single raspberry for dinner.  So we're off to a great start!


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