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Old 09-02-2011, 08:51 PM
Shannan_Breanna Shannan_Breanna is offline
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Join Date: Feb 2011
Posts: 2
Question Disabled daughter needs surgery......

Hi everyone,

We are looking for advice, good or bad, our daughter has a brain abnormality called Lissencephaly, she is unable to talk, sit, roll, crawl, walk etc. and never will be able to. She also suffers from epilepsy, increased muscle tone, requires suctioning and is fed via a PEG. Despite all her medical issuses she is a beautiful, happy little 7 year old. Our surgeon told us at the start of the year that she is going to need surgery (growing rods) sooner rather than later. We know that if she doesn't get the surgery it will probaly shorten her life expectancy as it will affect her lung function, but our other concern is the amount of pain she will be after the surgery. She also had double hip surgery in 2008 and that was VERY painful. We would like to hear from anyone that has been in a situation similar to ours, as we would like to take on everyones experience before we make this huge decision.

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Old 09-02-2011, 09:28 PM
tracy tracy is offline
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Join Date: Jul 2010
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Default Re: Disabled daughter needs surgery......

Hi Shannon,
Welcome!! Our daughter had growing rods put in in October last year, she also has siezures, but they are well controlled by 400 mgs of Ospolot daily. (Allergic to Epillem) Em also had six staples put between her vertibraes for extra strenght! It was a 6 hour Op but they keep pain meds up constantly, for the first week, & we got a script for more if needed when leaving hospital...we didnt need to take them but was a security blanket going to our Motel? What state are you guys in? What degrees is your daughter? We have not looked back since surgery, a huge...but right decision!! The lengthenings are every 6 months. Biggest risk is of infection...but bigger risk is to let it go and affect their lungs?? Em was 59 degrees when we had Surgery.
Try to stay calm as these decisions are in the Surgeons hands...they are Amazing!!!! I would send you a PM if I knew how??
Cheers Tracy
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