Tuesday, November 6, 2012

Answers?

Not really...
For those who have been anticipating the FEES study as much as I have, it was...well, we'll just say bad would've been finding out there was paralysis.  Good would've been finding out that she all the sudden was a pro at eating.  We are neither. 
They couldn't get a great reading because Liv was TICKED.  You would be too if you had a camera shoved down your nose and throat.  So she wouldn't actually eat.  And because she was not happy she kept aspirating what was making it's way down.  But, the screaming did tell us one thing, her vocal cords are just fine.  There isn't any paralysis.  This can be seen in a negative light as well.  Because her vocal cords are fine, we don't know why she's aspirating.  But, she still silently aspirates so they suspect something's off with her (what they called) sensation.  So basically, she can't feel when she aspirates.  This would be caused by her reflux being worse than thought.  So we'll be starting Liv on prevacid which is stronger than the zantac.
Liv will also be starting feeding therapy.  They're hoping that if a pro comes and helps me feed her and watches her we can figure out what's going on. 
A few problems I had with today.  We haven't made any plans on getting tubeless yet.  No swallow studies scheduled (we'll schedule after the feeding therapist has a chance to work with her a bit and see where she's at.)  No real answers.  And I got talked down to a bit.  REALLY hate when dr's do that to me.  Those combined with a clogged NJ, two xray machines down meaning no NJ replacement, starving baby, and a near car accident (not my fault) this morning led for a very wet drive home.  Luckily, I had a nice box of kleenex that I made my friend. 
Then, my song came on (the one I posted by Jason Mraz a while ago) and I was able to gain some composure and think about the good stuff.  Some of which are, we were given permission to start trying baby food.  (Since it's thicker, she should be fine eating that.)  The feeding therapists will come to my home so we'll only need to go down for swallows.  Liv is 18.5 lbs. I was able to unclog Liv's tube with a little coke (and she's still napping!)  And Andrew is talking to a contractor as I type about our hopes of building a house next year. 
Today wasn't great.  In fact it was down right lousy.  But, 'tis the season to be thankful.  So, even though we're stuck in this feeding limbo and my dream of seeing my baby's face is further off than hoped we're not in bad shape.  

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