I think that this picture gives a pretty good sense of our day...exhausting, overwhelming, and in desperate need of a hug! Adam is holding his "Prayer Bear," a kind of cool tradition of caring provided by the chaplain's office. So how did we get the point where we are all wanting to cuddle a snuggly toy? I'll give you the run down of the day.
The points that led up to our current state began yesterday. Since a significant part of this experience is to have one or more seizures while hooked up to an EEG, the staff here are very interested in any triggers that are known to encourage seizure activity. With Adam, a couple of reliable triggers are missing any doses of medication and exhaustion. So...first thing was to take him off his meds, and then to also think about sleep deprivation.
One scheduled test was to do an ictal scan that involved injecting Adam with a radioactive isotope during a seizure, followed by a brain scan. The trick is that the isotope has a limited useful lifespan, and so to work, Adam must have a seizure during a specific timeframe--in this case, between 8am and 2pm on Monday morning. Our challenge was to try to second guess how quickly after eliminating meds and depriving sleep would Adam go into a seizure. Easy, huh? Not surprisingly, we didn't get it just right, and his first seizure came shortly after he went to bed Sunday night, at around 10:30pm. No problem, we thought, we'll just get him up extra early, and hope for a second event on Monday morning. Adam woke up by himself earlier than we had intended, and he had a second seizure Monday morning at 6:30am. A little more worried about hitting it now, we went for exhaustion in the form of playing Wii games in the room, and fortunately he had an additional seizure at noon. Whew! Isotope injected, scan completed, test successful! But now, Adam is truly exhausted (and still off meds), and so has an additional seizure at 5pm before meds are restarted. As of this writing (7pm), he has had his first dose of meds, and is sleeping very soundly!!! What a crazy work-out routine!!!
We also had our first visit with the neuropsychologist, and got the schedule for testing for the remainder of the week. Only snag is that things have not worked out as anticipated with insurance, and so we may be relocating our sleeping arrangements and completing the tests as out-patients. Good and bad to that...on the up side--if we do end up relocating, our time is a lot less scheduled or controlled when we are not involved in tests and we could explore the city a bit more, but on the down side--if there are any problems in the off hours, we are on our own. Frustrating since we had talked to all of the parties involved prior to coming, and were assured that all paperwork was in order. Ahhh...modern insurance/healthcare. Gotta love it!
See why the picture fits our day pretty well? We could all use a hug or two...and a friendly bear showed up at the room to serve that need. And, Brian scoped out the Build-A-Bear Workshop downstairs and it turns out that they have a monkey (Adam's all time favorite animal), so we may take a detour to that store at some point during the week. And I must admit, I did start my day with a caramel latte from the downstairs Starbucks (thank you, Brian!) so the day has had some bright moments!
All in all...a mixed emotion kind of day. Good...but exhausting. Thanks for reading this far and keeping us in your thoughts...we truly appreciate it!
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