Monday, July 4, 2016

Week 150: Summer cold

Nothing lasts forever.  We'd enjoyed a stretch of great health for Lemon, pretty much the entire time since mid-March.  It's been wonderful to let CF take a back seat to the rest of our lives for that time, but it's time to refocus.















First of all, we had our clinic visit on Wednesday.  On the plus side, Lemon is weighing in at around 31lbs, which is a huge improvement over the 26lbs that he was when he had the G-tube placed.  On the minus side, he's weighed 31 lbs pretty much since the beginning of April, not the continuing weight gain his team was hoping for.  In some respects, this is hardly a surprise.  His nightly formula dose was calculated to be just over 50% of his daily needs.  But, of late, he's pretty much given up eating or drinking anything more substantial than Popsicles, which means he's only getting half as many calories as he actually needs.  We can't add a fourth can to the three cans he's getting overnight, because if we did that he'd be too full to tolerate his therapy in the morning. 






So, as a stop-gap, we're adding bolus feeds during the day.  Basically, after each of his "meals," we're pumping 1/3 a can of formula through his tube after he's done, so he's getting an extra can a day.  He's tolerating it fine and seems to get a kick out of pushing the formula through, but for his staff (ie parents) it means washing out three syringes three times a day, having open cans of formula in the refrigerator where they always threaten to spill, remembering to set up the syringes before every meal, in addition to setting up the meal itself, etc.  There's always one more thing.  Hopefully it will make a difference in terms of his weight gain.





















Then, of course, there's the cold.  A little summer cold, both kids have it.  In practice, what this means is that Lime sneezes from time to time, has a runny nose, and coughs occasionally.  Lemon, meanwhile, coughed to the point of vomiting the first night.  Having been through this before, Papa Bear and I immediately cut back on his night feed to two cans, delivered at a slower pace, which he seems to be able to tolerate even when he's sick.  So, although there's been a lot more coughing, at least all the formula we're putting in is staying in.  We waited this thing out for five days, doing chest PT 3 times a day, but today we decided that we'd better call in for antibiotics, so now we're locked into two weeks of levofloxacin.  It was a tough call to start antibiotics, but we had to be realistic.  Lemon has never in his life kicked a cold without a course of antibiotics, and the longer we held off the harder it would be to clear this.  Sigh.  Let's just hope a single course of oral antibiotics does the trick!

































In non CF news, we've been doing lots of fun things.  We enjoyed the rest of Grandma and Grandpa's visit very much.  Then this weekend, we went to a fair and saw lots of farm animals.  We played at the splash pad.  We're looking forward to a visit from some more of our New York MVP's later this week, when Uncle Jared and Auntie Lauren show up for a visit.  And, last but by no means least, we're looking forward to celebrating Lime's first birthday next weekend.  I can hardly comprehend that it has been a year, and what a year it has been!










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