April 11, 2016

GI appointment

  For those that don't know GI stands for gastroenterologist.  That is a Dr that is hopefully going to fix my baby girls gut!
  Finally, the day of Sadie's appointment.  It's not like it took a long time to get in to see him, but when your child is screaming in pain, everything seems like it is in slow motion.  The Dr was really nice. He listened to everything; her history, current issue with pain, my concerns and current plan with her meds, and what I wanted out of this appointment.  I explained that I have this huge fear about her intestines becoming twisted because that is so common for kids with Cornelia de Lange Syndrome.  Every time she screams in pain my thoughts immediately go to a bowel obstruction and I become a total mess, second guessing my every thought and action. He reassured me that at this point she does not have any signs of intestinal malrotation.  He examined her and talked about all of her past surgeries and tests that she has already had done in her lifetime.  There are no signs that this is the issue. He gave us his thoughts and his plan for moving forward and how to help with her pain.
  I won't lie, I was a little reluctant to follow his plan but I will.  Even though I feel like I have he constipation under control, he still feels like I don't.  So he wants me to work on increasing and decreasing and changing the meds all around, and consistently giving her something every single day no matter the outcome until we get her consistent and going daily.  Hopefully this will help with the painful screaming.  Fingers crossed!

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