Early today, Bob's epilepsy doctor informed us that they plan to remove the leads in Bob's brain on Monday, should they obtain data on a few more seizures this weekend. He will then stay overnight for monitoring. They wanted him to have a few seizures today, but this did not happen. They reduced his Keppra dosage this afternoon and we were encouraged to play loud music and have Bob drink some caffeine to trigger seizure activity. Tomorrow, if Bob does not have any seizures tonight, they plan to reduce his Lamictal dosage.
At the beginning of the day, Bob wasn't controlling his pain medication well and was understandably feeling depressed and grumpy. After some coaching from his nurses, he was able to get his pain under control and we had an enjoyable afternoon together. He enjoyed having mashed potatoes with tomato soup for gravy, per his request, for lunch. This was a childhood favorite of his and was a treat for him since he's been having some difficulty chewing.
I was able to leave for a few hours this evening to enjoy a casual party with some of my colleagues here at UVA. This was a nice reprieve from hospital life. Upon returning to the hospital, Bob was back to feeling irritated and was a bit daffy. I reassured him that the doctors and nurses want him to have seizures while he is staying at the hospital so they can obtain data on how best to move forward from here. I left him as he was drowsing off to sleep. I am hopeful that this return to a more agitated and confused state was a sign that he had an impending seizure.
The current course of action for Bob is for the team at UVA to continue to map out where his seizures are taking place so they can determine an appropriate course of action. As of today, they had mapped out 5 seizures, two on one side of his brain and three on the other. Because the seizures are happening on both sides of his brain, this rules him out of the surgery that would remove pieces of the brain where the seizures are initiated. He is still potentially in the running for having a neruo-pace implanted later this year-- the neuro-pace implementation would work to stop the seizures before they happen, similar to a heart pacemaker. This can only be done if his seizures are beginning in only two or less locations within his brain. Thus, his team needs a little more time to determine if his are only originating in the two locations they have already identified, or if there are other locations within his brain that are impacted.
Please pray that Bob has a seizure this evening and a few tomorrow. This will provide his team at UVA with more concise data to make better decisions about his continued care. Please also pray that his seizures are only happening in two locations within his brain so that he can remain a candidate for the neuro-pace. We ask that you also say prayers of gratitude for the team of doctors, nurses, therapists, and assorted hospital staff at UVA who are making Bob's stay a positive one. Your thoughts and prayers are always appreciated and I am so grateful to my friends and family for keeping in touch.
-Megan
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