As with everything, Chris and I tried to come up with a game plan to keep Bex up while also trying to keep our sanity. We decided the best plan of attack was to keep her distracted by making her routine as different as possible. Our college friend was in town visiting, so we took Bex out to dinner with him at the time we would normally be putting her to bed. Then we went for a late night Target and grocery store run. We didn't get home until almost 10 and kept her occupied with a short walk outside, Face Time with the grandparents, playing with toys, and finally a late night bath. The 4am wake-up call was a little rough on all of us, but we kept her busy around the house, were the first customers in the door at Panera, and got to the hospital a little early to wander and let her people watch. Bex was such a little trooper and so well behaved despite being exhausted!!
|First customer at the door at Panera...6AM!|
The EEG itself was a breeze. The nurse who does these EEGs is wonderful and may be my favorite person that we have encountered on this journey. She is so good with Bexley! She gave Bex a pinwheel to play with and let me lay down on the hospital bed with Bex while she hooked everything up. Bex was so exhausted by this point that she just played with her pinwheel and was asleep within 10 minutes of laying down. Chris and I were so proud of how well she did with the sleep deprivation and were thankful that the process was much smoother than we were anticipating.
|So sweet even with an EEG cap...pulling it off!|
Today we received the results from the EEG. Our one frustration is that a nurse called to give the results and pretty much read the report verbatim, which is primarily in medical jargon. When we asked for clarification or to put it in layman's terms, she struggled to do that. There were about three phone calls back and forth before we were able to get a clear understanding of the results (and for the nurses to consult with the neurologist to get a better understanding of his plan). The best we can understand is that there were some subtle abnormalities on the EEG; however, these abnormalities do not indicate nocturnal seizures. These results categorize Bex as "low-risk" of seizure occurrence while taking anti-seizure medication. One thing that was concerning to me was that he had said at our last appointment that he did not want to see us until July, but after this EEG, the nurse told us that he wanted to schedule a follow-up appointment with us soon. Anyways, long story short, he wants to meet to discuss the pros and cons of considering weaning Bex off Topamax, her anti-seizure medicine. While you never want to hear the word abnormal for any test done on your child and we still aren't sure what they mean, we take it as a positive that he has suggested a potential medication wean despite the abnormalities.