Wednesday, April 27, 2011

JTWF Special Kid: Austin


Austin was born with an extremely severe and rare form of Hirschsprung's Disease, resulting in Short Gut Syndrome. He has ~30 cm. of functioning small intestine (only approximately 10% of his entire intestine remains). He is TPN dependent 13 hours a day and has an ostomy and g-tube. He has very high ostomy outputs, so he also gets an additional 1,000 ml of rehyrdation fluids in the middle of the day, so he's "hooked up" 17 hours a day. He is listed in Pittsburgh for a small bowel transplant. His Short Gut Syndrome has been managed by Pittsburgh Children's. Despite all the medical challenges, we try to keep his life normal. He eats some by mouth, goes to preschool, loves lawn mowers and tractors and is a huge joy in our lives. See http://grey.colorado.edu/shortgut/index.php/Main_Page for more information about Short Gut Syndrome.


~~As taken from his CarePage

2 comments:

Heather said...

Hi I’m Heather! Please email me when you get a chance! I have a question about your blog. HeatherVonsj(at)gmail(dot)com

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