Tentative Surgery Date
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  1. #1
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    Default Tentative Surgery Date

    Well, we have avoided it long enough. Isaiah's neuro feels that it is time to get him a Deep Brain Stimulatory (DBS). This is invasive brain surgery, so it's no small matter. It is like a pacemaker for the brain. It involves inserting electrodes into the brain and a sending unit into the chest. If it works, we will be able to wean him off of some of the meds he's taking. Right now, he is well beyond the recommended maximum, and still needing increases. This is really the only logical next step. We have a tentative date for January 23. I'm very scared, but I can't go on seeing him like this either. He hasn't had a full night's sleep in over a month, and there's a part of every day that he's not able to walk or talk. We are trying to make do until then with medication adjustments, but he is so unstable that his reaction to the medication at any given time is unpredictable (sometimes great, sometimes not so great).

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    Wow....very scary stuff. I'll be praying for your little guy. What will his recovery be like? Have they told you what to expect?

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    Posting Addict wishing4agirl's Avatar
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    You all will most definitely be in my prayers. I cannot even imagine.

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    Posting Addict gardenbug's Avatar
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    It is so scary, but standing by and doing nothing is no better. There really is no choice. My heart goes out to the whole family. Tough tough times.
    Leo (3 1/2) with Malcolm the cat

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    Mega Poster betsy0040's Avatar
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    Scary stuff for sure. Please KUP.
    Elizabeth & Jamie - 7/17/2004
    Joshua - 11/23/2008, breastfed for 17 months!



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    Posting Addict kerina313's Avatar
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    *hugs*
    Erin & Stephen 4/10/04
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    William Graham & Samantha Lynne 4/29/10
    4/1997, 9/2003, 6/2007, 1/2008
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    Quote Originally Posted by Alana*sMommy View Post
    Wow....very scary stuff. I'll be praying for your little guy. What will his recovery be like? Have they told you what to expect?
    We really don't know. The last time he had surgery, he had a complication that landed him in the ICU for 8 days, so it's possible that could happen again. If not, he should be back on his feet in a couple of days. We do not know how he will respond to the DBS, but the hope is that we will be able to gradually bring down the doses of his meds as we turn up the DBS.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    Community Host sarahsunshine's Avatar
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    Lots of thoughts going your way. I wish you all the best. Keep us posted.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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