a light at the end of the tunnel

I have been slowing down on my postings, but for several days everything was just status quo.  Over the weekend Amy tried to work on feeding Kylie, but had very little success.  On Monday the occupational therapist (OT) fed her again, but had much less success than last week.  Because of her lack of progress (actually, she digressed), the OT ordered “the test”.  I have no clue what the test is called, but they have her drink barium and then X-ray to see where it goes.  Sure, make her radioactive, as if she doesn’t have enough problems already…  The test showed that when she sucks from a bottle, some of the liquid heads toward her lungs.  This causes her to choke, but not as much as you would expect.  She does get it all out on her own, but getting liquid into your lung generally is not recommended.  Another problem they discovered was her reflux.  When she does get milk into her stomach, it doesn’t all stay there.  Some comes back up, and can get into her lungs or even be drooled out.  So basically, she doesn’t get much down, and what does get down doesn’t stay there.

            Immediately upon seeing the results of the test, the OT threw in the towel on feedings.  Kylie will have surgery on Friday to install a “g-tube”, a permanent feeding tube.  I say permanent, because it isn’t a tube down her throat that can simply be pulled out, but of course it can be removed surgically.  We don’t know when or if she’ll gain the ability to eat or not, so this may be her condition for quite a while.

The silver lining in all of this, if one can be found, is that she will be able to come home.  The only reason she’s still in the hospital is because of the eating problems.  It will take about a week for everything to heal up, so hopefully she will be released around Friday of next week.  We’re pulling for her to be home for Mother’s Day. 

When they insert the g-tube, they will also do a few other minor procedures, one of which will solve the reflux problem.  They will teach us how to feed her through the tube, what to do when/if her mischievous brother pulls it out, etc.  I can just hear it now, Emily calling, “Mommy, Daddy, look what Dallin did!  He unplugged baby Kylie!”