Moving Forward… to Neurosurgery

In truth, this post is so very, very late. Though central to our life, I’ve neglected to ‘announce’ anything here. Caught up in the storm of scheduling, facts, theories, investigations and emotions, I’ve never quite found the words.

…and I wanted to find the words, the best words to explain what’s happening in our home. The enormity of what’s to come. The pains we’re feeling, the pure fear we feel in our hearts, the difficulty in taking every breath.

But I can find no words. No appropriate, correct, inspiring, uplifting, sing-song, poetic-like words to tell you what the future holds for what I will be sharing on Special Happens. What I can do, is give you excerpts of what we’ve shared with family and close friends.

It goes something like this:

“J has autism, cerebral palsy, sensory processing disorder and intractable (untreatable) epilepsy.  A form of epilepsy called LKS / ESES.  His brain is in a spike and wave pattern that, among other damages, does not allow REM sleep…the sleep needed to consolidate the days events…allowing learning to happen.  Spike and wave equivocates to his brain firing in attempts of physical manifestations of seizures…. the damage being done is pervasive.”

“…the last EEG… shows that he is at 100% spike and wave activity the instant his eyes close and nearly 100% during his awake hours.  In essence, his mind is in a constant state of internal seizure / pre-seizure activity and causing damage…”

“The MRI shows that the ENTIRE left hemisphere of J’s brain is malformed. …It looks to be the true example of “sometimes these things happen.  And, quite honestly, a miracle that he’s here…and functioning as well as he is.”

“We’ve had a series of appointments… PET Scan and MRI, NeuroPsych, 2 days of infusions, a LONG appointment meeting the Rehab doc, NeuroPsych again, one of two neurosurgeons and our epileptologist, and the then second neurosurgeon…  They have had what they call a “conference” and presented J, his EEGs, all testing etc to 20+ doctors, therapists, social workers and more…”“Since NO medication will have (or will ever) work….the surgery is necessary to stop the left side from it’s constant seizure status.  Eventually, the one medication that’s holding them to a subclinical level will wear out … and J will then be in a full blow constant outward (clinical) seizure.  That – again – no medication can stop.”

They have definitively concluded that “we have to disconnect the entire left hemisphere from the right… disconnect the two halves.  It’s called a Hemispherectomy.”

“…. In the end, the choice we are faced with is to watch him deteriorate slowly, eventually needing this brain surgery or a brain surgery that also involves removing a portion of the right side too… or give him a chance….”

To say my heart is heavy would trivialize the sorrow of my soul.

Gina St. Aubin, Editor of Special Happens Gina is the owner / editor, and lead author of Special Happens. She resides in Colorado where she is a wife and mother of 3, and is a member of the Board of Directors for the SPD Foundation. You can read more about her here.

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

14 Responses to Moving Forward… to Neurosurgery

  1. I have followed your blog for quite a while now, but this is the first time I have commented. I want you to know that you, your precious boy, and your entire family are in my prayers. I cannot fathom being faced with such a heart wrenching decision and hope you know how truly brave you are.

    • Liz, Thank you for commenting and for following! We will take all the prayers for J that we can get.

    • Thank you Christie. Yes, scary. I keep second guessing our decision even though I know it’s what has to happen… I just don’t want to admit it… even when I am admitting it…

  2. I can only imagine how hard this all is. If I were in your situation, I’d be tempted to do the surgery, since it seems to offer some hope, but I know this must be the scariest time ever.

    You have been your child’s best advocate through all of this, and you’ve searched high and low to find him the best help possible. I hope your final decision gives you a sense of peace.

    • Thanks Kim. I’ve researched and researched, more even recently… I know this is what we have to do. Just scary!

  3. I think of you often. You are all in my prayers. Even from miles away, if there’s anything I can do to help please let me know!

  4. Honey my heart burns in sorrow for all of you and makes me angry that some power to be thinks this is fair. Why? I wish I could be there to hold your hand and just be a friend.

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