Monday, April 21, 2014

Week 35: Comeback kid

When I left you all last week, Lemon had just suffered a relapse of what we will refer to as the April Plague.  His cough had returned with a vengeance, so we’d put in a call to the doctor to get a new antibiotic (amoxicillin-clavulanate, better known as Augmentin) which we started that night.  I stayed home from work on Tuesday to administer medicines and chest PT, and to try to get some food into the poor kid.  He was miserable and coughing, but at least no longer throwing up.  We decided to wait another day or two to see if the new antibiotic would kick in.  By Thursday morning, though, the cough was still going strong and we decided that monkeying around at home for almost two weeks with no substantial improvement was enough, and that it was time to see a doctor.  So, I called the clinic and got an appointment for Friday morning. 

Predictably, this caused Lemon’s cough to make a dramatic improvement on Thursday afternoon.  By the time we got home from work that day, he bore some resemblance to his usual self.  He was sitting up, playing with his toys, and generally seemed much happier about his situation.  But, I figured that since I had the appointment anyhow, and the cough was still present if diminished, I would still take him into the clinic for a professional evaluation.
The first thing we learned at the clinic was that, perhaps not surprisingly, a couple of weeks of throwing up and having no appetite had completely negated any weight gain that Lemon had made in the weeks leading up to the Plague.  He weighed in at only 16lb 3oz, just a hair lighter than he was a month ago.  He’s down in the 5th percentile for weight now, which is really not where we want to be.  So, we’re on another full court press to boost his weight up again.  In order to do this, we need to be sure that his enzymes are working as well as possible.  The enzymes Lemon takes are enteric coated, which means that the beads containing the enzymes remain sealed in an acidic environment (like the stomach) and open up to release the enzymes only in the intestine where the pH is neutral.  One strategy to help boost the enzyme’s activity is to raise the pH of the stomach a bit (bringing it closer to neutral) so that the enzymes can be activated even faster upon arriving in the intestine, giving them more time to work to digest Lemon’s food. 

To that end, the doctor prescribed ranitidine (aka Zantac), which reduces the production of acid by the stomach.  This comes as a mint-flavored syrup, which Lemon really doesn’t like, but we’re managing and hopefully he’ll get used to the strange taste soon.  I’m hopeful that his weight will be back up by our next clinic visit in May and then we can stop using it.  With the rantadine and the antibiotic, our daily task list is a little too long for my taste—two vitamins, once a day each; rantidine, twice a day; Augmentin, three times a day.  Add PT 3 times a day, food 4-5 times a day, and 2-3 naps, and the day is pretty much full before you do anything else! 

As of today Lemon’s cough is nearly completely gone, and he’s in great spirits.  His recovery was well timed since we had three special visitors this weekend—Opa and our friends Jon and Jess from Boston.  Lemon received some pointers on crawling from Opa, and had a great time playing with Jon and Jess. 

Thank you so much to all of you for the chocolate and good wishes, it helped immeasurably to bolster our spirits during a difficult couple of weeks.  Now, things will hopefully get back to more or less normal, by which I mean that we're flying to New York on Thursday for our first trip back to the east coast since our move.  Have I mentioned how much I'm looking forward to May?


  1. Hi friend, just happened upon your blog and scanned your post about Zantac. My daughter (18 mo ) has CF and we always have them add grape flavor to the Zantac. It is the strongest flavor and helps cut that gross mint taste. Good luck!

  2. We have found the peppermint flavor to work best for us. They switched vendors once and we got spearimint flavored, which smelled horrible and she refused to take.