Casey Jo Update: Feeding Tube Change

Casey Jo had her follow up appointment in Cleveland on Dec. 10th. Her lung function was up a little to 27%! (Last time it was 24%) They went ahead and pulled her PICC line out!! After being on IV's for almost 5 weeks her lung function should've been a little better but they decided to give her a break from the IV's for now. She lost 7lbs since her last appointment!!! Not good at all!!! And they finally got her Mickey-Button (feeding tube) changed!! I'll post a couple videos of them changing out her tube as they had a little bit of trouble hehe. They had 3 people try to pull it out and finally the last person got it! It shouldn't have been a big deal but they figured out that the balloon in her stomach did not deflate as it was suppose to. 

Here is the new Mickey-Button. The bottom of the stem they fill with water so it's like a balloon in side her.

Here are the videos! 

Thank you all for the continued thoughts and prayers!!! Casey Jo loves when I read her the comments! :)

P.S. Now that she is done with her IV antibiotics, she has contacted UPMC to get an appointment with transplant testing again. They will notify her of an appointment soon. :)