As expected, we really liked the neurosurgeon! She was great with Oliver and answered our questions very patiently. The majority of our time with her lies ahead, if we proceed with surgery. We basically spent our time on introductions and talking about generalities. We'd discuss the formal plan for Oliver's operation when we return. Overall we felt really good about her and the surgery. She said Oliver was the age she liked and had a seizure focus that made her feel like he was a good candidate. At this point Dr. Theile said Oliver is a surgery candidate based on the data they have (so we actually don't have to wait 2 weeks to know that). Obviously, if the seizures don't return we wouldn't pursue surgery. Assuming they will return, what we'll learn from the surgery conference is the risks vs. the benefits of surgery for Oliver. This will also be the time when the plan, tailored specifically for Oliver will be discussed. Then we'll have to make a decision. We hope it will be clear when that time comes.
Dr. Theile was puzzled by how much “better” this EEG looks compared to the Duke EEG. At Duke Oliver had electrical discharges every 10 seconds or so, here he has had them less frequently, every 10 minutes or so. That is a huge difference and it explains why his development has totally blossomed in the past week or so. What caused this is a mystery to her and us. This is the nature of epilepsy- many more questions than answers. The best guess is either the medication combo is finally right or Oliver's immune system is suppressing seizures (since he was sick with a stomach bug Wed-Thur). We think it is probably an immune system thing as this is his usual pattern.
We've decided to keep Oliver's EEG going until he gets his MRI tomorrow (at 2pm). The MRI here is different than the one at Duke because this one allows them to get 3-D images instead of just flat sequences. Dr. Duhaime explained that the brain, if it was unfolded, would be the size of a football field with six different layers. Sort of like a HUGE 6 layer cake. Oliver's tubers are like sticking a finger into the layer cake. It causes all kinds of problems. Stop for a minute and picture that. An entire football field, with 6 thin layers. Whoa, glad I'm not a neurosurgeon! What is amazing is that it is all crinkled up in your skull, which is why brain surgery is so complicated. When you consider it like that you realize this isn't like getting a splinter out of your toe! One top of that you have critical areas of the brain that are all over that region; gross motor control, language, problem-solving. It is tedious to say the least. So, we're happy to get this MRI. The more they know before we start cutting the better! We do know there are 4 or 5 small tubers (i.e. benign tumors) that are the possible culprits, all in the left frontal lobe region. The challenge is to find which one is causing the seizures. Also, Dr. Thiele explained that this special MRI can show where the blood vessels are located, which is crucial to avoiding life-threatening bleeding during surgery.
We are (sort of) hopeful Oliver will have a seizure today. He seems more tired and more spaced out. He has that seizure-ish look. While we are here, I would feel better if we got at least one or two and they matched up with Duke's data. The more data we get now the better we'll know how to move forward. I've never heard another parent, who has been through this say “we just had too much data.” Often you hear, “we wish we would have had more.” So, I know this is weird, but would you pray that if Oliver is ever going to have a seizure again, it would happen while we are HERE and not on the plane back to Wilmington?
Oliver cried (for the first time) this morning because he wanted to leave the room. Sweet boy, this is no fun! 72 hours in a crib is maddening for a 2 year old (and the parents too.) At this point we only have another 24 hours or so to go! Whoo-Hoo! We can do this :)
So we're hoping for more rest tonight, one or two classic Oliver seizures, and a great MRI experience tomorrow. Thanks again for all your emails and calls. We feel so loved and supported.
1 comment:
Oh! I feel your exhaustion from entertaining a lively little guy in his crib for 24-7. It's draining at the best of times....for all of you. We were so lucky to have PALS (pet program) come to visit, Music Therapist and the Child Life Specialist who would bring new movies and toys daily. Does your hospital have these services? If you haven't been offered...ask! I find that's the trouble is no one offers and unless you know...well how would you know?
The surgery route. It's scary isn't it. I pray Oliver seizes (did the docs diminish his meds while having the VEEG?) and that the MRI (is he having a spect as well?) shows all sorts of data.
My heart goes out to the three of you. Hang in there!
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