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Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. She didn’t have any seizures while we did the EEG, but we had still seen quite a few since she had started the meds. What the doctors were able to conclude is, her breathing issues don’t seem to be related to seizures (that we can tell). Which is interesting, because it really seemed to correlate. Her breathing issues have gotten worse and her seizures have gotten worse all in the span of a couple of months. It is very confusing to meet with epilepsy specialists and they seemingly are more concerned about her breathing than her seizures.
Right now, Maggie’s breathing issues happen continually all day long. She is either hyperventilating or breath holding until her lips turn blue and she collapses, momentarily passing out. When we had her first EEG at CHLA a month ago, it was registering as seizures, every 3-4 minutes. I took a picture when I saw the report on the computer, then panicked and asked a doctor if Maggie was actually having seizures every 3-4 minutes. It wasn’t seizures though, it was her breathing. She did have several seizures during the 24 hour EEG, but not as many as it seemed to me from what I was seeing on the screen. What happened is, the computer program was registering heightened abnormal activity as possible seizures. When the neurologist explained, I was obviously relieved. So when we returned for the 48 hour video EEG, the team decided to monitor her breathing as well. They informed me they had never done this before. Usually it’s separate, but they really wanted to see if they could figure out if there was a trigger, anything really. I didn’t think anything of it, just happy that they were really trying to help her, and doing something they don’t normally do.
I think I asked several people, EEG techs, nurses, a couple of doctors, if we really were the first family. Everyone said, they had never monitored both at the same time. They were all very interested to see the results.
Maggie was less than thrilled to have her head wrapped and also have tubes in her nose. There were some tough moments, when she would yank and pull and try to get everything off of her head. We learned, icepacks, to soothe the head wrap itching, a freezing cold room would keep her head from getting too warm, fun movies, singing songs and an occasional wrestling pin move to hold her down. This time around, it really helped that both AJ and Shelly were able to rotate in and be with Maggie a bit. And since we knew we were headed into the hospital, my mom was able to fly out and be with Grayden the entire time.
So that is where we are. 10 days seizure free. Still having breathing issues, but we have some leads/ideas of what to do next. We are exhausted but we are finally coming out of this 2 months of absolute craziness. Right now, we are taking everything day by day, moment by moment. That is all we can do. BTW – love you guys and all your support.
You can see all of the wires that were attached to her for tests. I can understand why she was frustrated, but at the same time when AJ and/or Shelly was around, she is all smiles. Mommy is definitely the boring one. And I think Grammy and Gray had a good time together too.
