Thursday, May 5, 2016

Day 5: Cinco de Mayo

Tillery loves cheese quesadillas! Before we left town to go to Cincinnati on October 1, 2014, we stopped at her favorite Mexican restaurant for a cheese quesadilla and today she enjoyed a cheese quesadilla lunch.

After Tillery's second surgery, she stopped drinking and had to have an NG tube put in to keep her hydrated. Over time, she stopped eating and we made the decision to have a more permanent G-tube placed. The surgeon made a hole through her skin and stomach and then stitched the openings together. The tube goes straight into her stomach and there is a balloon on the inside that we inflate with water that holds the tube in place.

The body likes to heal itself so if Tillery's tube comes out, we have about 30-45 minutes to get a new tube in before the hole starts to close. We have supplies and knowledge to put a tube in at home but there have been a few ER trips at times when we did not have supplies with us.

Tillery now eats by mouth and is weaning from fluids through the tube. We now use it only for medicines and for a small amount if supplemented fluids.

Tillery is proud to be a tubie and loves showing her belly. A new game for Luke and Tillery is to yell "belly time" and they both start running around with their shirts up.

Pictured below: Tillery's farewell quesadilla in October 2014, today's quesadilla, g-tube diagram, water bolus selfie, and Tillery in the ER a month ago waiting to have a new tube replaced when hers came out.

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