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Gracelyn’s Story

Gracelyn is 12 years old and has Cystic Fibrosis. She was diagnosed when she was 2 years old. Gracelyn is a strong willed fighter.. As of October 4th 2013, Gracelyn has had her lung transplant!

Latest Journal Update

November 27th

Happy Thanksgiving!

Gracelyn developed a little cough and stuffy nose a week ago. She had a nasal culture done last Friday that tested negative for viral infections and positive for a bacterial infection. Dr Wheeler in Mpls gave her an antibiotic that she started Monday night. They said give it a week before seeing any improvement.

We noticed she wasn't getting better and was getting out of breath doing things she normally wasn't getting out of breath doing before.

Yesterday, thanksgiving day, she was out of breath just walking around the house. She kept saying she was ok, so we continued with our Thanksgiving meal we were making.

Around 9:30pm- 10:00pm last night she tried doing her inhaler to see if that would help her catch her breath. It back fired and she could barely breathe. We almost called 911, it was very scary. She told us not to and was able to some what catch her breath.

We decided to lay down since I had to work early on Friday. A few minutes after laying down Gracelyn burst into tears and said, I think I need to go to the hospital because I still can't catch my breath. I paged the on call transplant doctor from Texas first. She asked if we had an albuterol nebs, we didn't. She also asked her O2, which was 98%. She wanted us to avoid the hospital if we had to so Gracelyn isn't exposed to the sick people in the ER.

She sent us and told me to have them page her as soon as we got there. Gracelyn had an EKG and X-ray. They found something in her X-ray in her lungs.

The transplant doctor told them to give her a prescription for the neb, some oral steroids and an another antibiotic.

Gracelyn and I were up all night and We got back home around 5am this morning.

We were starving so we had some thanksgiving leftovers and finally went to bed when the sun was coming up.

Please prayer she gets better. She admitted the reason she was crying was because she thought if we went to the hospital in Mpls, they would make her go to the hospital in Texas and she would miss Christmas at home in MN:-(

Let's hope that doesn't happen.

We go back for labs in 7-10 days. I'll keep everyone posted as to how she is doing.