Friday, July 29, 2011


I LOVE this belly - scars and all!  We haven't seen this naked belly in 18 long months.  We are so grateful that last Friday's surgery was successful and the new port was placed.  Theoretically, it should last a few years!  You can see it bulging a little off on her left side at the lower part of her rib cage.  It's a non-traditional spot, but because of the placement of her shunt tubing which runs behind her left ear, across her chest and down her right side to her  second distal shunt valve (the bulge under the scar on her right side), it was pretty much the best spot.  We're hoping the giant white square starts to repigment now that there's not a dressing on it 24/7.  Oddly enough, there's hair growing around her old Hickman entrance site, poor girl.  There's just one steri-strip left to fall off up at the tunnel site and then she'll be completely bandage and suture free!  She "helped" the steri-strips off the port entrance site yesterday - naughty girl. 

In other Marissa news, we're going to be exploring some GI issues.  Her self-gagging and nausea has become completely out of control.  If she's not being held (and even sometimes when she is) she is gagging herself constantly.  She'll wake in the middle of the night and do it, it's the first thing she does when she wakes in the morning, she does it when she 's eating, playing, doesn't matter.  It's obvious there's something causing it - more than just behavior.  The "team" has decided a repeat swallow study and upper GI is in order with a possible pH probe to follow.  Hopefully we can get some answers.  Until then, we run fast when we hear the retching and she unfortunately spends a lot of time in her arm restraint.

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