Yesterday I was able to connect with Dr. Duhaime. Y'all would really like her. She is warm and down-to-earth. She knew Oliver's case well and I could tell he had been on her mind. That is a stupendous comfort.
I went down my long list of questions and she patiently answered them all. My first question was about how long should we plan to be in Boston. Three weeks. Wowzers. Up to two and a half of those weeks could be in the hospital. Of course every part of the plan depends upon Oliver. Flexibility is key. Do you have any idea how uncomfortable that makes me? Me, flexible? Ha!
Surgery # 1 will take place on a Tuesday morning. This surgery is when the iEEG (Intracranial EEG) will be placed. This is different from the other EEGs Oliver has had, in that these electrodes are placed directly on the surface of the brain . These electrodes are actually sewn in---to the brain. Yes, I said “sewn into the brain.” The surgeon said it is like “embrodering a pillow, very tedious.” It usually takes half of a day. Does that sound like science fiction or what? Who knew you could even do such a thing?
She said the recovery for Oliver will probably be more challenging for this (surgery #1) than for the second surgery. We should expect a significant amount of swelling and discomfort. If your brain has just been embroidered that can't feel good, now can it? Oddly, enough we are encouraged that the electrodes are sewn in. Dr. Duhaime assured me that they have done this with many “wild” toddlers and those children haven't torn them out. That is very good news because, as you know, we have the king of wild things!
Once they get the data they need from the iEEG then they will do the second surgery. The iEEG should give an indication of the precise point of seizure origination. That is the whole point of sewing electrodes into the brain. They want to know exactly what brain tissue needs to stay and what needs to go.
The date of the second surgery is flexible (there's that word again). It is totally dependent on the data from the iEEG. It could be 2 days or 9 days after the first one. Dr. Duhaime said this second surgery is the “riskier one." That makes sense because this is the one that involves removing part of the brain. The surgery could last anywhere from two hours to the whole day. They will give us a pager and update us on the progress. I imagine those hours of waiting will feel like years...
3 comments:
Oh Stephanie, It does feel like waiting years...but somehow you get through it...even when you feel like you can't breathe or your heart is truly breaking and the tears flow...and then there will be moments of calm and then moments of hurry up clock, can't you go any faster?!
My heart and prayers go out to all of you!
Oh Steph. We are praying. Love you.
Glad to have an update. We all (mom, dad, Aaron and I) are thinking about you guys and supporting you all the way. Oliver is so lucky to have you guys as parents. What an amazing miracle if this can finally stop the seizures!
On another note: I liked your Pottery Barn story :) Bull in a china shop. I can so picture it. You are a brave woman,Isaiah would not be allowed to step foot in there!
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