Ella has been having seizures more frequently and they are becoming more clustered together. So, we went back to the lab to have a phenobarbital level drawn again yesterday. We'll see if her medication is increased. We are still waiting to hear the results from the doctor.
Today, Megan had to keep Ella up all day in preparation for the EEG. It was a tough task, but she was successful in her endeavor. We had to keep her awake for the first portion of the EEG. She slept for the middle portion. Then, we had to wake her up again for the final portion.
To start, they measured her brain activity while they flashed a strobe light with different patterns in her eyes. We think she might've had a seizure just after the lights, but couldn't tell because it was so dark in the room and she was swaddled very tightly so as to restrict her movement. We were told it wasn't necessary for her to have a seizure while being monitored as the doctor would be able to tell regardless. Then, they measured activity during sleep, then wakefulness. She was so tired that she wouldn't wake up with me clapping as hard as I could in her ear. We used noisemakers and were jostling her to no avail. She finally woke up when we were about to put a wet rag on her face. Megan took pictures of Ella hooked up to all the electrodes, which I'm sure will be posted soon.
Megan writes:
"The EEG went well. We don't have results yet, but we have a little bit better understanding about what they might learn from it based on what may or may not have been in the tracing.
Thank you for your prayers."
Now, we are waiting to see Dr. Balmakund on Thursday to go over the results of the EEG.
Today, Megan had to keep Ella up all day in preparation for the EEG. It was a tough task, but she was successful in her endeavor. We had to keep her awake for the first portion of the EEG. She slept for the middle portion. Then, we had to wake her up again for the final portion.
To start, they measured her brain activity while they flashed a strobe light with different patterns in her eyes. We think she might've had a seizure just after the lights, but couldn't tell because it was so dark in the room and she was swaddled very tightly so as to restrict her movement. We were told it wasn't necessary for her to have a seizure while being monitored as the doctor would be able to tell regardless. Then, they measured activity during sleep, then wakefulness. She was so tired that she wouldn't wake up with me clapping as hard as I could in her ear. We used noisemakers and were jostling her to no avail. She finally woke up when we were about to put a wet rag on her face. Megan took pictures of Ella hooked up to all the electrodes, which I'm sure will be posted soon.
Megan writes:
"The EEG went well. We don't have results yet, but we have a little bit better understanding about what they might learn from it based on what may or may not have been in the tracing.
Praise: We happened to run into a social worker as we were checking out who hooked us up with an application for supplemental medicaid for chronic illnesses (called TEFRA). She was incredibly helpful and friendly. She advised us to wait until we are billed to pay anything on the test right now, whereas we were originally told to expect to pay for it in full today (over $600!). The application for TEFRA is a long process and the sooner you get started the better, so it was great to have this information essentially at the beginning of Ella's illness. And the coverage backdates three months from when you put in the paperwork, so if Ella is approved (please pray that she will be :), it would even cover her recent hospitalization, as we understand it. That's huge!
Now, we are waiting to see Dr. Balmakund on Thursday to go over the results of the EEG.
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