Monday, March 9, 2015

Week 81: And Losing It Again

After the great news about Lemon's weight gain at the pediatrician's appointment last Monday, we were brought back to earth by a week sent to remind us that CF is always there, lurking, waiting for a moment when you feel like you might have gained the slightest edge, to bring you back to earth.

On Tuesday, we celebrated Papa Bear's birthday with an appropriately nerdy birthday cake (for those who care, those are the branched chain amino acids).

When we got home, we found that Lemon had developed a bit of a runny nose (picked up at the pediatrician's office, a version of an illness our nanny had, or something else entirely, we'll never know).  Of course, we hoped against hope that THIS would be the cold that he managed to kick by himself without antibiotics.  Not that he's ever managed it before, mind you, but we keep hoping.  And, for the next couple of days, he seemed more or less fine.  His nose continued to run, but he continued to do all of his normal things as well, so we kept on with our normal routine.  By Thursday evening, he was coughing occasionally, but still in good spirits. 

Friday morning we had our 20-week ultrasound for Lime (where is the time going???).  He looks normal in all respects, including his intestines which were checked to see if he has any signs of meconium ileus.  He doesn't, which is great although it doesn't foreshadow things one way or another in terms of CF diagnosis--Lemon had normal looking intestines, too.  Anyhow, Lime was busy whirling around so much in utero that most of the "still" pictures of him came out as white blurs on a black background, and even the 3D reconstructions didn't come out well--nothing really worth sharing.  And, assuming all goes according to plan, that will be our last look at him before he arrives in the air-breathing world sometime in late July.  So, all of us will have to just live in suspense!

Friday afternoon, Lemon's cough seemed a bit worse and his appetite had basically disappeared, so we were starting to think that probably on Monday we'd call for antibiotics, but it didn't seem quite bad enough to call immediately.  The difference between Friday night and Saturday morning was stark, though.  The cough deepened quickly into something formidable--big, wet coughing fits that shook Lemon's entire body, plus a moderate fever and no energy whatsoever.  We called in first thing Saturday morning and had the antibiotics in hand by mid-day.  We spend most of the rest of the weekend (when we weren't sleeping or doing extra sessions of chest PT) like this:


It took a good 36 hours before we started to see any impact of the antibiotics, but by late Sunday afternoon there were glimmers of hope.  Lemon started talking a little bit again, and found the energy to stand on his own feet and walk around a little.  He even ate a container of tapioca pudding, his first real solid food since Thursday.  Today he was better still--definitely tired and fragile but coughing much less and eating a bit more.  Of course, that precious 250g that he gained to get over the 10kg hump is totally gone--I can see every rib and vertebra when I give him a bath.  So, we have a measly 3 weeks before our next weigh-in to try and get that weight back on, plus hopefully a bit more.  And so it goes. 

Antibiotics really do feel like a miracle to us--this was without a doubt the worst cough Lemon has ever had, and the antibiotics were able to get him straightened out in relatively short order.  We are so lucky (and grateful) to be fighting this disease with modern medicine to help us. 

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