Transplant Testing Part 3

Casey getting her 23 tubes of blood drawn.
As some of you know, Casey Jo had some appointments in Pittsburgh on Tuesday and Wednesday. Tuesday was her busiest day. She had to do a PFT (pulmonary function test) and they also drew a blood gas. Got her weight (which she's lost some) Then she talked to the Pulmonologist and his Fellow then talked with the surgeon and her coordinator. She was also suppose to talk with social services but everything was running late and they had to cancel that appointment.
On Wednesday, she got a CT scan of her chest, did a 6 minute walk and got 23 tubes of blood drawn! 

They have decided Casey Jo's lungs are definitely bad enough for a transplant but they really would like for her to gain some weight for the operation. Having more weight on will make recovery a little bit easier and it will help with less chance of infections. They want her to try bolus feeds during the day with her feeding tube. In the past, she has tried them but made her feel extremely full and uncomfortable but they're hoping it'll be different since she's had her gallbladder removed.
 So at this time she is still not 'listed'.
They want her to email them to keep them updated on her weight. She's right on the borderline, they thought hard about her case but since there are people even worse then her they've decided to just hold off on listing. They say transplant will happen, there no question about that but just a matter of getting her body as ready as it can be to have an easier recovery. Thank you so much for all your wonderful words of encouragement and prayers!

Casey Jo Update- May Cleveland Appointment

Casey Jo had a follow up appointment in Cleveland today! 
When she left the hospital in early April her PFT was 23% and today it was up a little to 26%! Awesome! She did lose a couple pounds since leaving the hospital but has been maintaining her weight. Her appetite has recently gotten a little better but it's still hard for her to get back in the routine of eating again. 
She has been having some high fevers (102-103) even while being on three antibiotics and her doctors aren't sure why they're breaking through. She has had fevers off and on her whole life, she has her doctors stumped!
She goes back for another check-up next month, so we'll keep you updated! 

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