This week's updates + surgery
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Lewis/Laczko family
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Lewis/Laczko family
Tuesday, Aug. 13: This afternoon, the neuro team slowly, individually stimulated each piece of each lead to attempt to trigger a seizure. This 30-minute stimulation caused no pain or discomfort, and it also didn't cause a seizure. We began weaning his meds.
Wednesday, Aug. 14: Leo had a 1.5-minute seizure that presented exactly as his seizures at home. Our neurosurgeon called this afternoon to say the seizure came from Leo's left frontal lobe.
Wednesday, Aug. 14: Leo had a 1.5-minute seizure that presented exactly as his seizures at home. Our neurosurgeon called this afternoon to say the seizure came from Leo's left frontal lobe.
- As a reminder, past EEGs have shown seizures originating here. His SEEG implantation on Monday was to detect deeper seizure activity, specifically in the motor cortex, to determine if he'll have a frontal lobectomy or hemispherectomy. Our hope is that all seizures are coming from the front.
- The team aims to capture at least three seizures for consensus on their origination.
- Today is Brian's birthday. Next year will be better.
Thursday, Aug. 15: They pulled the last bit of medication tonight, so Leo's officially off all meds. And he is feisty, in the best way — without medication sedating him, he is 100% Toddler Leo, and we love it. He's silly and fun and opinionated and expressive.
- Leo's big surgery — either the frontal lobectomy or hemispherectomy — is still scheduled for tomorrow, though unlikely. They're holding his OR spot just in case, doing labs on him, and he won't be able to have food or drink after midnight.
Friday, Aug. 16: In the wee hours, neurosurgery came by to redo Leo's headwrap. There was some seepage (no blood) coming from one of the posts on the right, which had come loose.
- They stopped by again at a more reasonable hour (still before 6 a.m., because they start their days early) and there's still leaking. Leo will likely go to the OR today to have that lead revised or removed. They'll likely put him under for this, which they wouldn't normally do for an older patient, but again: Toddler Leo. The fact that the lead is loose isn't dangerous or painful; the biggest risk in the short term is infection.
- He's had seizure #2.
The big update: After Leo's overnight seizure #2, the teams feel confident moving forward with the frontal lobectomy, even without a third seizure. All abnormal activity and seizures are coming from the front left, they're clinically presenting the exact same way, and there's nothing to indicate a potential for different data. So this morning, Leo will go back for his surgery. It's happening.
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