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Gracelyn’s Story

Gracelyn is 11 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

January 29th

After a few visits last week, one with the CF doctor and many lab appts, everything came back good and or negative.


However, her lung function is still down and her nose is still plugged. So, once again the transplant team asked us to go to Childrens in Mpls and get a double gag culture. (That sounds lovely.)


Dr Wheeler and the CF nurse were out of town so we had to see a nurse that doesn't know anything about Gracelyn and had no idea what a double gag culture is..


It seems they are trying to get Gracelyn to cough up mucus. Which she has never been able to do. She has absolutely no cough so there we sat. They tried to gag her with a culture stick and that didn't make her cough.


So, then I emailed the transplant team and they got back to me right away and said to just get another throat culture and nasal culture.


They shoved this tubing with a section up her nostrils multiple times, all while she was crying in pain :-(




They transplant team said to put her on Zyrtec while we wait for the results. We carried on with our day and I received a long voicemail from Childrens in Mpls an hour ago saying that they are very sorry but the specimen spilled and we have to go back?!?!?!?!?




I don't know whether to cry or laugh. Hasn't this kid been through enough.




I just emailed Texas again and asked if it could be nose polyps. She said, possibly..




I feel a few more appointment coming up next week.




I also did ask if they thought it was rejection again and she said, maybe :-(






We are scheduled to go to Texas in March during Gracelyns spring break. I sure hope they figure out what is wrong and we don't have to rush down there once again.
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Comentarios

7 Comentarios

Pam M
By
Praying for Gracelyn and your family
Gary breeding
By Gary breeding
So sorry Gracelyn had that trauma. Praying results will reveal the problem. Luv to all. Georgia
Bev Johnson
By Bev Johnson
Me either!!
Gary breeding
By Gary breeding
So sorry Gracelyn had that trauma. Praying results will reveal the problem. Luv to all. Georgia
Melissa Thompson
By Melissa Thompson
Poor thing... Sending prayers!!!
Kim Cain
By Kim Cain
Unbelievable!!! Poor Gracelyn. I hope they get it right the second time. I would want to call first, see if they know EXACTLY what they are doing or GO ELSEWHERE to have it done!!! I know, easier said than done!!! I feel for both of you. How frustrating and preventable is all that Gracelyn is having to go through already and now twice over. Wow. UGH!!!! Prayers being said Linzi. God bless and God's speed this time.
Mary Ann Nystrom
By Mary Ann Nystrom
Oh that poor baby. 😥