Total count over the weekend was 4, 27, & 8. Four - number of seizures Eva had. 27 - number of concerned family & friends at her big sisters birthday party; Eight - how many lost hours of sleep. To recap - Late into Thursday night, around 2350 Eva had a tonic clonic in her bed. I cannot say that she had it in her sleep but we do know that she was sleeping previously. It lasted about 3.5 minutes. We stayed up with her for about 1.5 hours and after she came out of the recovery of the initial seizure, got a cup and a half of juice and regained her strength, she was back asleep. We placed her back into bed around 0145. At 0215, Scott went to check on her, she was a little warm but sleeping. At 0245, she had another seizure. This was the hiccup or jerking seizure. It lasted a little over 30 minutes. After 0330, we decided to keep her in our room for the rest of the night. She woke up early around 0630 so we were now awake. I called the doctor and made an appointment for 0945. Our doctor said she was going to call the neurologist and advise him that Eva to be put on seizure medicine. I also talked to the doctor about possible "parent watchers" during sleep hours. She advised me about a seizure bed alarm which costs about $500 or the program 4 Paws which are dogs for disabled persons to assist their family. Needless to say, they are both costly investments. We left knowing that the neuro office would be calling soon. After we got home, I talked to the assistant of the neuro and she said that she was calling in to the pharmacy a medication called Keppra. This is specifically preventative seizure medication mostly used for epilepsy. This was comforting to know that this may be an answer to our problems but a bit concerning since she has been tested negative on three different occasions with epilepsy by an EEG. So, after a while, I called CVS and picked up the medication while Eva had her Granny and speech therapist here. On my way home, Granny called and said she was having another seizure. When I got home - about five minutes later - she was in the recovery stage and pretty much out of it. Our therapist was as calm as could be, holding Eva, talking to her, making us feel more comfortable of the situation. After Eva recovered with her cup and a half of juice, she was tired and went to sleep. She took a five+ hour nap. Later that night after Keppra, ibuprofen, and tylenol was in her system, she had a fourth seizure at 2207. It lasted about four minutes. This was another tonic clonic. It took her more time to recover from this one and her coloring was a blue hue. Her legs and arms looked liked all of her veins and nerves were translucent. Her heart beat was fast. We stayed up with her until around 0200 just to make sure she was sleeping well and sound. I made a human fence on the couch and we slept side by side. At 0245, Abigail woke up from a five minute coughing spell and joined Scott on the other side of the couch. At 0400, I placed Eva in her bed, put the monitor next to mine, and decided to take a three hour nap.
Elizabeth woke up early being party day and was in Eva's room talking to her since she was awake. At 0745, I went into Eva's room. She had a fever of 100.5 and was given medicine - Keppra and ibuprofen. She seemed a bit irritable (a side affect of Keppra) so we let her do what ever made her happy. ie-pull hair, play with phones, ect. I put her down for a nap around 1030. At 1400, we were getting her ready to leave but the coloring was like it was Friday so Scott opted to stay home and I left for the party. He stated that after a 20 minutes power nap and 30 minutes of quality couch time, she was a different baby. When I got back home around 1800, he was absolutely correct. She was babbling, laughing, smiling, crawling, side-stepping, playing, everything. She was good. I was good. Dad was good. We were more comfortable with our situation. The fever was still there but it was low grade and hopefully now more controlable. She went to bed last night around 2100. At 0100, I was getting concerned listening to her breathing through the monitor. It was like she was unable to breath from her nose and only able to literally gasp for air whenever she could - like a brand new swimmer being thrown into the waves of Hawaii. I stayed up with her for about an hour, just watching her sleep and then I went to bed. She woke up around 1100- giving an extra hour with the time change. She seemed to have that bad coloring again. I fed her some lunchfast and she seemed better with food in her belly. Her coloring was much better and her energy was returning. She took a long nap again but as of now, at 2300, she has not had a seizure today - knock, knock. I am going to call our doctor to make an appointment for tomorrow to give her our weekend update.
I have so may unknown answers to questions I have not thought of yet. The ones I know I have are - Could the seizure medication, seizures, or ? deregulating oxygen levels? What is sleep apenea? Can seizures occur while sleeping? I just don't know what else. I think I am just lost with all of this.
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