Monday, February 22, 2016

Week 131: Not enough

I'm happy to report that the combination of lots of time in the vest plus oral antibiotics seem to be winning the battle with Something Vicious.  We'll find out about the war once we go off antibiotics at the end of this week.  Unfortunately, thanks in part to Something Vicious, Lemon has still not really gained any weight.  Since September.  The volume of the alarms that go off at each visit has been getting louder and louder, and reached a fever pitch this past Wednesday.  Here's where we are:

Our electronic medical records may be fancy, but they don't yet let you manually scale the axes to something useful.  Nonetheless, I think you can see the point.  The goal for all CF kids is to hit the 50th percentile for weight-for-length (the yellow line).  We've never done it, and at the moment we've slipped below the green 10th percentile line.  More troubling is that Lemon's height velocity may be slipping (data not shown), which would mean that he isn't taking in enough calories to keep up with the growing that he's supposed to be doing.  For the first time, our after-visit summary said, "Please consider G tube placement."

So that's what we're doing.  Considering it.  Considering it seriously enough that I took Lemon in on Friday for a consult with pediatric surgery.  The operation itself doesn't sound too bad, other than being an operation and involving general anesthesia and whatnot.  I'm much more concerned about all the things that follow--more equipment, more tubes, weird formula, unknown impacts on our already ridiculous schedule, even more complexities with living and traveling, a semi-permanent hole in my kid that is not suppose to be there, etc.  Of course, I have to weigh those concerns against the concern of continuing to be this skinny--too skinny to grow, to skinny to fight off the inevitable infections, too skinny to wear the pants portion of the pj's that he got for Christmas and loves.

But enough of that.  We will continue to consider until the middle of next month, when we have our follow-up at the clinic.  I'm fairly sure we'll end up scheduling the surgery for sometime in April, but we'll hold off on making a final decision while we do a little more homework.

In the mean time, Lime (who has also been fighting off a touch of Something Vicious these last few days) finally managed to cut his first tooth.  Of course I'm thrilled for him, but I'm also slightly heartbroken that this toothless grin that I could stare at all day will soon have teeth in it.  I recognize the cuteness of the two-toothed stage, of course, but the toothless stage is what really tugs at my heart strings.  And it's gone forever.  Sigh.  If its disappearance is accompanied by the arrival of sleeping for more than 2 hours at a time, I would accept that as consolation.


We also had a wonderful visit with Uncle Jared this week.  He got in lots of quality time with the nephews.

 And paid the consequences--following Opa's lead, he took advantage of a brief recuperation window.


He headed back home to New York on Saturday, much to Lemon's chagrin.
And so it goes--another fast week in our little lives.  We've had some mild weather the last few days that melted a bunch of the snow, revealing the barren wasteland that is our yard, which of course has me thinking about garden projects for the spring.  Topping the list are a swing set, a sour cherry tree, and a pineapple quince tree.  That and finding a way to keep the rabbits from eating my chili plants as soon as I put them in the ground...

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