Tentative Surgery Date

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Joined: 12/01/05
Posts: 1000
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).

Joined: 11/28/06
Posts: 848

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?

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

:bigarmhug: You all will most definitely be in my prayers. I cannot even imagine.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

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.
:comfort:

betsy0040's picture
Joined: 03/28/08
Posts: 121

Scary stuff for sure. Please KUP.

kerina313's picture
Joined: 09/10/05
Posts: 60

*hugs*

Joined: 12/01/05
Posts: 1000

"Alana*sMommy" wrote:

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.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Lots of thoughts going your way. I wish you all the best. Keep us posted.