Sunday 10/16 Update
So, Amanda and I are still hanging out waiting for a seizure. That still sounds weird to me. At this point we are in it for the long haul. It sounds like it is safer for us to wait in the hospital until the seizure comes than to get frustrated and head back to NC. Evidently, it is very common for a hospital stay to be great seizure control. Amanda is not alone in failing to throw a seizure in the hospital despite having lots before coming in. The doctors indicated that we should expect to be here several more days because once the seizures come they will want to get good control of them again before getting on an airplane. Because the PET scan had several potential points of origin, the EEG remains highly important in the process.
Amanda has been pretty wild coming off meds and they have had to fix the EEG leads each of the last two days. She is pretty bored and ready to go. There are only so many entertaining things you can do in a hospital and after six days she is pretty done with the process. She and I have played just about every iPad app known to mankind. She also has some toys which she really enjoys launching off the bed. She also announces her presence regularly with her horror film worthy screams. I am fairly sure I will need a hearing aid when I am 80, especially if this continues LOL.
So not much news to report at this point. It is really just a waiting game where we won't have a lot of information and then all of the sudden we will get a lot of information once things start to happen. I do feel secure in fact that she is in the best place for her to get some help as they know her well and have all of the tools necessary to find out why the seizures came back and where they are coming from. The med wean also gives us a chance to evaluate some other medicine options for her if they determine the seizures are coming from her right side. While I should feel scared that there is a big seizure coming our way, the good Lord has out in my heart the peace that surpasses all understanding that He is in control and that Amanda is where she is supposed to be.
I will post again as I know more. God Bless!
Susan
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