Birth Date - November 28, 2000
Diagnosis - Gastroparesis
THEME: BAND INSRUMENTS: Trumpets, trombones, tubas, French horns, oboes, clarinets, saxophones, flutes, piccolos, snare drums, xylophones, and cymbals. NO STRING INSTRUMENTS unless they are included in a “collage” type pattern of mixed instruments. (CAN INCLUDE PATTERNS WITH MUSIC and MUSICAL NOTES. PATTERNS CAN ALSO INCLUDE “WORDS” – but NO RELIGIOUS SENTIMENT)
Due Date: 3/1/17
Sarah is a band geek. She loves to be around her band mates, plays any instrument she can get her hands on, and hates to miss school because she misses band. Her goal is to go to the University of Florida to study music, and become a school band director.
In October of 2015, she started to have a lot of pain in her right side. I took her to see a GI, and a lot of testing was done. Along the way we noticed that the pains came on after eating. Some foods caused worse pains than others, and in turn caused trips to the ER. Our GI thought it would be worth it to test her gallbladder, and it was decided to have it removed. The surgeon wasn't as convinced. We were told there was only a 50/50 chance this would take away her pains. For about a month after surgery she was doing better. Until the pain came back.
Time to start looking for another cause. We found one ... Gastroparesis.
During a 2 week stay in the hospital, we found out several things. First, she can drink enough clears to keep herself hydrated, but solid foods won't leave her stomach. Decision time again. A feeding tube was placed through her nose and into her intestines. Any time she tried solid foods, she would vomit, and the tube would come out. Since the NJ tube wasn’t working, it was time for a permanent GJ tube. This allows her to be fed her a special formula with all the nutrition she needs for the day. She is hooked up to it for 19 hours a day.
Gastroparesis is a funny disease. It paralysis the stomach, but isn't always active. When it is, food can stay in her stomach for a very long time. We don't know what her future holds. We do know that she won't let it keep her away from her music or reaching her goals!