Thursday, August 11, 2011
Thank you all for your patience w/ us the past few months. We've been busy...and gone! But we're back for now. We can't promise the frequent updates that we've given in the past since the end is near w/ Karsie's medical stuff, but we'll try to give information as we feel comfortable.
Quick hits from the beginning of the summer:
We took a trip to Yosemite and Karsie had a blast! She's a good little camper.
Karsie had to be taken into GI in San Diego unplanned due to an enormous amount of granulation tissue, which hasn't gone away....yet! Nothing came of it other than we tried to get rid of it by burning it. Didn't work.
Karsie got to spend a few weeks with her Nana and Papa. There were trips to the zoo, trips to Sea World, trips to the beach (which she hated). She had her second birthday party and a trip to disneyland (which wasn't in San Diego in case you were wondering).
Other medical news: here's a quick narrative of our journey.
Karsie has turned into an eater!!! Well, sort of. She has definitely stepped up her game. So, we were given permission to start weaning her off of her tube feeding with the hope to get down to nothing by the time surgery happens. During the weaning, we have had a bear of a time with her skin around the button. It has been broken down and covered in yeast for a lot of the summer. This has been due to leaking because her button has stretched her skin so much that her stomach liquids would pour out!Since she was doing so well on her weaning, we decided to cut her feeding altogether and see how she did. She picked up her eating and did well. But then a few days ago her skin finally had enough and her leaking was as if there was nothing plugging her hole leading to her stomach. So, after permission from GI, we removed the button. That was an event! The idea is that the wound will heal on its own, but during the healing process, there's a gaping hole that spills everything that she eats until it closes. It didn't close right away, and it caused a trip to the ER to get Karsie something for pain because the stomach acid burned her broken down skin every time it leaked. Which was every time she took a drink. Which was always because she was so thirsty as everything was coming out. Poor girl! The good news was that it only lasted a day because it has started to close. Our only obstacle now is to get her back to eating like a champ because if she doesn't grow enough by the next GI appointment, they're going to put an NG tube in her nose for feedings. We're not sure how that's going to go with a 2 year old, and we'd rather not find out. But the good news is that she's been eating well. Grow Karsie, grow. No more button!