The diagnosis:
-- Sophie's seizures are originating primarily from the left frontal cortex with a lot of spiking** in the left temporal, left parietal and left occipital cortexes.
-- There is also a lot of spiking in the left motor and sensory cortex (more on that later).
-- There is also some diffused seizure activity with no focal origination.
-- There is also some spiking over the entire right hemisphere though no seizures were noted originating from the right hemisphere (good news...though of course it would have been better not to see any spiking on the right hemisphere...more on that later).
**Spiking is considered seizure activity but not a seizure. Makes perfect sense...right?
The plan:
Step 1: Keep our composure, man this sucks!
Step 2: Repeat step 1.
Step 3: At 8am tomorrow, Sophie will be taken back into surgery for a subtotal hemispherectomy (I will pause for you to grab your medical dictionary, ready?). In other words, they will remove the left frontal cortex, left parietal cortex, left temporal cortex and left occipital cortex and LEAVE the motor and sensory cortexes.
Step 4: Immediately after the subtotal hemispherectomy, EITHER step 4a, 4b, or 4c will occur. They will keep the grids on the left motor and sensory cortex and right hemisphere for immediate observation.
- Step 4a (best case scenario): After the subtotal hemispherectomy, no or minimal spiking will be noted in the motor and sensory cortex and no further action is needed.
- Step 4b (so so scenario): The motor and sensory cortex will continue to show spiking in which they will perform a multiple subpial transection (MST). In other words, the cortex will stay but slices will be made to the horizontal nerve fibers.
- Step 4c (don't want to think about it scenario): If they continue to see a lot of spiking in the motor and sensory cortex, they will remove it. If they remove this cortex, Sophie will be weak on her right side and lose a lot of her fine motor skills in her right hand and walk with a limp. Considering the delays that she already has, this would be one more further setback to overcome.
Step 6: See Sophie in ICU at 6 or 7 pm tomorrow night...almost 12 hours later.
Step 7: Never see seizures again! Okay, maybe overly optimistic but why not change course. My philosophy ever since ACTH didn't work has been to accept the worst and hope for the best. This way you can't get crushed. But it is way too late for that now.
So, the only reason we are closer to answers is passage of time...which seems to be on slow motion. Sophie is still being strong as always. As I started typing this blog, she woke up and without prodding, she blew me two quick kisses with her lips. I think she is telling us that we are doing the right thing and she can handle it. Elaine can't wait until she can cuddle up and snuggle (Sophie's favorite pastime) this Saturday.
Brandon (with technical editing from Elaine)...because I have no idea what parietal means
Update right before posting: Sophie just sat up and started waving and saying "hi hi hi hi" to Elaine. She even said "hay hay" when we showed her the picture of her older sister. We sat her up and she drank a little.
16 comments:
Wow...speechless.
But hopeful. I am going to keep hoping with everything that I have in me that this is all going to be exactly how it needs to be.
Hang in there, all of you. There are a LOT of people sending you as much karma as they can muster....myself included.
I can't begin to imagine the rollercoaster of emotions you must be feeling right now!! I'm sure it feels like your hearts want to jump right out of your chests everytime you look at Sophie. I'm sure Sophie did blow you those kisses so you would know that she knows you're doing everything you can to make sure she has the best chance she can at a good life.
We're all with you in spirit and I hope that somehow you can pull some strength from all the thoughts and prayers that are coming your way.
We love you,Sophie. Sleep tight, Sweetie, and wake up to a world where you are free from these awful siezures that have plagued you for so long
Love,
Aunt Barb
We continue to pray for Sophie and the best outcome! She is so strong :)
Ken's right...Tons of people hoping and praying for the best!
Thank you for sharing the strategy with us. And although it's probably beyond scary to even think of 4c...if it stops the seizures...she can overcome the delays. She's way too strong and determined not to.
My heart goes out to all of you tonight and tomorrow.
Holli
We are hoping and praying for the best! Sophie so deserves it! I love that she is blowing kisses and doing so well! One strong girl! We'll be thinking of you and sending lots of prayers your way!!!
Wow, you guys. I so strongly believe that Sophie WAS giving you a sign that you're doing the right thing. You guys, and Sophie, are SO SO brave. I'm just in awe of you.
All of my thoughts are with you guys over the next 24.
Love,
Katie
We are hopeful and pray the Lord will see Sophie and all through this. That it is in the Lord's will that Sophie lives a healthy, happy and fruitful life.
We wish there was more that we could do. We are all praying for Sweet Sophie to be heal and for all of you.
We are so thankful to have so many that are thinking and praying for Sophie and the family.
We agree with the others that Sophie with her kisses and talking was telling you that you have made the right choice for her.
God Bless you all
Love
Papa Don and Grandma Lee
That sounds like Sophie!!! Amazing! WOW! She is such a go-getter!!! NOTHING is going to stop that girl! :) I guess she learned that from her parents ;) She loves to go & she loves to learn(even when it is Sara asking her questions non-stop:) :) I must admit my breath gets sucked away every once in a while thinking of you all -- just know you are an inspiration as people & parents! We Love You!!!!
Laura, Matt, Sara, Ryan & Julia
(((((((((((((HUGS)))))))))))))))))
Every step, every new development seems like a giant one, but you have come so far, and can only go forward. Sophie's kisses sound like she is definitely ready and accepting of what is yet to come. You guys have an amazingly strong little girl! She knows she is in good hands...God's hands.
You will have many hours from the beginning of her surgery tomorrow until you see her. Just picture her smiles, her beautiful eyes, her kisses, how silly she was on the drive there, etc. We are all praying for you guys, so take care of yourselves, and know God is in control, and all you can do is follow Him.
I am so sorry you all are going through this.:( Unfortunately, I was in your shoes about this same time last year. I too was pregnant. Our daughter Gabrielle began having seizures at 6 months. An mri showed cortical dysplasia in her right frontal lobe and we had that removed minus the motor sensory area at 10 months of age. They still saw spiking when they closed her up but we hoped the spiking would disappear as her brain settled down. The seizures returned last Feb. and we headed to NYU where Dr. Howard Weiner developed a 3 stage surgery. The first stage was grid placement, second stage conservative resection of primary focus (which for our daughter included the supplementary motor cortex and the anterior temporal), we then waited 6 more days with grids in place and seizures returned which resulted in an anatomical hemispherectomy. If the seizures hadn't returned we were going to have the subpial transections done over the motor sensory area because we were still seeing regular spiking. The surgery was devastating at first because our daughter had to relearn everything but now she is doing really well. I will pray that Sophie would not require the full hemi. I will pray that the decision be made very clear and that whatever is required Sophie's seizures would be a thing of the past and that she would begin to move forward by leaps and bounds. Please contact me if I can be of any help to you all.
It sounds like you have a very thorough plan. You are in such good hands. Dr. Chugani is amazing and has always been surrounded by a team of equally amazing people.
We will be praying hard tomorrow and thinking positive thoughts for all.
With much aloha~
Sheila
I can't imagine the emotions that you're both facing right now. At it's worst it seems like such a rock and hard place. Seizures vs. weakness/relearning.
I am praying for Sophie to have the best possible outcome. My thoughts are with you a lot these days.
I would say I'm glad she's doing well but none of that made any sense! I don't speak brain.
-Haley
Many deep breaths and a time to think about the news. Hard to say much more.
Your family and friends express it well. So what I might add is this: the Verizon commercials with all the support people standing in the background is nothing, visually, compared to those who stand behind you. More support, hope, prayers and love for a precious beautiful little girl and her most amazing family. The next 24 hours will feel like an eternity, but Sophie has done so well so far (even before this event) and she keeps reminding you that she supports your decisions with her strength and kisses and amazingly surprising resiliance.
So many of us there in thought and prayer. Sweet, Sweet Sophie. And a family beyond a words express.
CB
OK...Well....
I just wish so badly that I had something I could say to all of that....As you know, we have not faced this surgery, so I only VAGUELY understand what is involved....But I am supposed to be the "veteran" here and help you youngsters out!!!
But this I do know...you CAN and WILL deal with this...It sounds really promising...And Sophie sounds like she is such a healthy child to begin with...And in the BEST of hands with these physicians...
You have so much on your side...
IF (and that is a BIG "IF") it were to happen that she had some weaknesses after all of this is over, I PROMISE you, those issues will PALE in comparison to the seizures....Take it from me...With all of Colby's OTHER disabilites, the SEIZURES are by far the hardest to deal with...
So if we can just get rid of or reduce THOSE, your lives will be SO much easier...I PROMISE!!!
Love and prayers are continuing...
Fondly,
Cyndi
((Hugs))!
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