Livi's seizures have been worse over the past few days with new types showing up as well as all seizures being more intense and perhaps more often. We have hardly seen her awake not seizing in the past two days--perhaps an hour or two all together. Yesterday we had appointments concerning her MRI which will be done today. While we were there we also called neurology telling them something else had to be done with her medication. They gave us a very strong new medication in the Valium family that she only takes a little bit of. Its hard to tell if its working. Its not supposed to stop them all together, but rather to stop these 30 min cycles of seizures at a time. We should find out today if its working. Of course we will have to wait for her neurologist to come back in town to definitively decide what the next medication step is, perhaps that will be prompted by a specific MRI.
Today we take her at noon for a 1pm MRI. Normally this is not a huge issue with kids and is always outpatient, but the chances of them having to intubate her because of the anesthesia is pretty good, and there is less of a chance that she will not be extubated today, thus landing her a bed in the PICU, which they have already reserved for her just in case. My honest thought is that she won't need it. Guess we'll see.
The MRI is of her brain and we are very anxious to hear about the results considering the onslaught of seizures since her last MRI which was in NICU (and totally normal). The MRI could show the reason for the seizures or the effects on her brain of the seizures from what I understand. If there is a tumor or a lesion they can decide that is what is causing the seizures and if there is abnormal tissue this is most likely from her huge amount of seizure activity.
The whole point of the MRI (though we would want it anyway) is to make plans for the heart surgery while we wait for other tests to come back in. Next week Brian and I will have a "care conference" with I think all of her specialists and we hear everyone's point of view concerning if she should have the surgery and when. Ultimately Brian and I make the decision. Daunting, to say the least.
Please pray for our peace and grace today to deal with what our doctor tells us tomorrow. She is calling with results no matter what--I told her I couldn't wait a week for "bad" results to make it into her office, so she could call me. We have absolutely no idea what to expect. None.
God is good all the time. All the time, God is good.