Monday, February 11, 2013

46 week update

I'm late.  I wouldn't even be blogging today if it weren't for the fact that I need some prayers!

We had our GI appt 2 Fridays ago.  Here's the scoop:
Battley needs a gtube. 
The gtube would be a permanent replacement to her ng tube (in her nose) where she gets all her food.  It is surgically placed on the belly and goes directly into the stomach.  This has nothing to do with us fixing her cleft palette so that she can take food by mouth some day.  That is still in the possible plans.
There is a SMALL chance that she can have this done in a doctor's office (think like having your wisdom teeth out) with an IV and a scope.  The 2 factors that will determine IF this can be done are:
1.  she can't spit up or vomit...well, she does.  all the time.
2.  she's really tiny...this would be done with a scope and B is super tiny


we tried a new medicine ('s a see if we could get her to stop spitting up)...didn't work

The doctor and the GI doc both think B also needs a procedure called a Nissen Fundoplication...I wasn't convinced.  I'll admit that I'm still not 100% convinced but that's another story.

We are FINALLY seeing a surgeon next Tuesday to talk about the procedure.  We are more than ready for this to happen.  I am hopeful that this gtube will do a few things:
1.  STOP her from spitting up.  She normally spits up about once a day but it can be as many as 4 times.  Each time she screams because of the pain.  It's so AWFUL to have to watch your child suffer when you have tried everything you know how and the things that should work don't.
2  allow us to feed her faster...she still eats 4x per day at more than 2 hours per time...that's 8PLUS hours a day I am feeding her.  She's officially starting therapy this week and she has other things to do with her time!
3.  our dream is to sit at the table as a family and eat dinner and have B eat with us in a reasonable amount of time

Please pray for these things for Battley.  Thank you!

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