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Thread: My sweet baby girl

  1. #1
    Junior Member
    Join Date
    Jan 2012
    Posts
    10

    My sweet baby girl

    My baby girlge went out fighting but did it her way, My daughter Shelby passed away on December 19, 2012, she would have been 19 years old on New Years Day
    It went down hill quickly, Shelby had CF dieabtis, CF liver, Cf kidney, CF Arthritis Diease Im told it is very rare for CF people to get all these dieases, 98 percent of cf population just get one or two things but Shelby was in that 2 percent population, she also had became allergic to all of the antibiotics that they had available to treat what grew in her lungs, and she would after 10 days of antibiotics she would start to ache badly and generally she hold on as long as she could handle the severe reactions generally end up feeling way worse than what had brought us to the hospital, such as in july she had a reaction to levofloxin and after 10 days she noticed a small blister on her hand, just like you would get if you got a cooking burn, within 3 days her hands feet and inside her mouth were one big blister they had to order one of the beds you get when you are a burn victom just so she could rest, they had never seen a reaction like this
    Shelby went in the hospital January 31, 2011 for a clean out, within two weeks fought and worked very hard and got her PFT up 15 points and things was looking good, then she picked up H1N1 flu while in the hospital and left to come home after a 6 week stay 5 points lower on PFT than what we came in with She just never recovered from it,
    On July 1 she went into intensive care and had a cat scan of her lungs and the doc told her she now was in end stage lung diease she pulled through we had long talks about what she wanted, she filled out a medical power of attny, form and said no feeding tubes no eg tubes, and only if she has a bleed from her lung they could put her on a breathing machine just to repair the bleed we left the hospital under pallative care/hospice late in august, she had a 5 day stay in november to give a last ditch effort with antibiotics, the docs stopped them after the relized they we making her worse and sent her home
    My worst fear was having to watch her struggle to breath the good lord above spared me that we ended up taking her to the hospital because she started to hold fluid her electrolites were off and she needed to get a little blood it always perked her up, her pulse ox was 98 when she passed away, as I watched her heart rate go from 161 to 30 in a split second (i think she herd me give them permmission to take her to ICU) she was done fighting she never wanted to go down to ICU again and as I was with her when she came into this world, I was holding her as she went out
    These Cf kids are truly tough cookies all tho I hate this diease I do believe it made my family closer stronger braver .....Its is horrable to say what do I miss hearing THE COUGH, how can I miss that it becomes apart of you I guess



  2. #2
    Junior Member
    Join Date
    Jan 2012
    Posts
    10

    My sweet baby girl

    My baby girlge went out fighting but did it her way, My daughter Shelby passed away on December 19, 2012, she would have been 19 years old on New Years Day
    It went down hill quickly, Shelby had CF dieabtis, CF liver, Cf kidney, CF Arthritis Diease Im told it is very rare for CF people to get all these dieases, 98 percent of cf population just get one or two things but Shelby was in that 2 percent population, she also had became allergic to all of the antibiotics that they had available to treat what grew in her lungs, and she would after 10 days of antibiotics she would start to ache badly and generally she hold on as long as she could handle the severe reactions generally end up feeling way worse than what had brought us to the hospital, such as in july she had a reaction to levofloxin and after 10 days she noticed a small blister on her hand, just like you would get if you got a cooking burn, within 3 days her hands feet and inside her mouth were one big blister they had to order one of the beds you get when you are a burn victom just so she could rest, they had never seen a reaction like this
    Shelby went in the hospital January 31, 2011 for a clean out, within two weeks fought and worked very hard and got her PFT up 15 points and things was looking good, then she picked up H1N1 flu while in the hospital and left to come home after a 6 week stay 5 points lower on PFT than what we came in with She just never recovered from it,
    On July 1 she went into intensive care and had a cat scan of her lungs and the doc told her she now was in end stage lung diease she pulled through we had long talks about what she wanted, she filled out a medical power of attny, form and said no feeding tubes no eg tubes, and only if she has a bleed from her lung they could put her on a breathing machine just to repair the bleed we left the hospital under pallative care/hospice late in august, she had a 5 day stay in november to give a last ditch effort with antibiotics, the docs stopped them after the relized they we making her worse and sent her home
    My worst fear was having to watch her struggle to breath the good lord above spared me that we ended up taking her to the hospital because she started to hold fluid her electrolites were off and she needed to get a little blood it always perked her up, her pulse ox was 98 when she passed away, as I watched her heart rate go from 161 to 30 in a split second (i think she herd me give them permmission to take her to ICU) she was done fighting she never wanted to go down to ICU again and as I was with her when she came into this world, I was holding her as she went out
    These Cf kids are truly tough cookies all tho I hate this diease I do believe it made my family closer stronger braver .....Its is horrable to say what do I miss hearing THE COUGH, how can I miss that it becomes apart of you I guess



  3. #3
    Senior Member
    Join Date
    Jan 2012
    Posts
    445

    My sweet baby girl

    Wow! I'm really sorry to hear your daughter took such a turn for the worse so suddenly. Was she ever evaluated for a transplant? I suppose all of the cf related complications she had made her a not-so-good candidate. Sorry again for your loss and I'm glad she passed peacefully. She's certainly in a better place now.

  4. #4
    Senior Member
    Join Date
    Jan 2012
    Posts
    445

    My sweet baby girl

    Wow! I'm really sorry to hear your daughter took such a turn for the worse so suddenly. Was she ever evaluated for a transplant? I suppose all of the cf related complications she had made her a not-so-good candidate. Sorry again for your loss and I'm glad she passed peacefully. She's certainly in a better place now.

  5. #5

    My sweet baby girl

    I am so very very sorry for your loss. I dread seeing posts like this and some days it is so hard to live with a disease that takes people your own age nearly every day. Your daughter was blessed to have you in her life and i hope she is breathing easy now. Love.

  6. #6

    My sweet baby girl

    I am so very very sorry for your loss. I dread seeing posts like this and some days it is so hard to live with a disease that takes people your own age nearly every day. Your daughter was blessed to have you in her life and i hope she is breathing easy now. Love.

  7. #7
    Cherylwithone
    Guest

    My sweet baby girl

    I am sorry for you loss at the same time I would like to thank you for sharing your story with us. This must have been very hard to do. As a mom you always wonder what to do when their health takes a trun for the worse.
    Hugs and prayers for your family.

  8. #8
    Cherylwithone
    Guest

    My sweet baby girl

    I am sorry for you loss at the same time I would like to thank you for sharing your story with us. This must have been very hard to do. As a mom you always wonder what to do when their health takes a trun for the worse.
    Hugs and prayers for your family.

  9. #9

    My sweet baby girl

    my thoughts are with you. i am so, so sorry for your loss...

  10. #10

    My sweet baby girl

    my thoughts are with you. i am so, so sorry for your loss...

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