Sunday morning was pretty normal. Hannah was acting fine just didn't have balance back yet and couldn't walk. She didn't have a temperature. Church is at 11:00am just is normally lunch time and naps for us, so Hannah was tired. During sacrament meeting she feel asleep in Nate's arms but we expected that since seizures take a while for her to bounce back.
I was upstairs in primary trying to get organized with my new responsibility as the primary secretary, when Nathan can and tapped me on the shoulder. Hannah was completely zonked in his arms with her dress partly unbuttoned. After having one
second full body twitch for 10 minutes before she went into a full seizure lasting a minute or two (around 12:30ish). This is the first time she had two seizures close together and the first time she twitched before hand.
Not sure of what to do (and still have two kids to take care of), I handed Nathan the keys to take her to the ER. One of the ladies next to me, told me I should go with him and that she'll take care of the kids. She also gave me a ride since Nate already left. He was at home, on the phone with Dr. Yost to know what we should do. We were advise to just control her temperature, increase her Keppra, and that the ER can't really do anything for her. Hannah napped in her room and I also needed a nap by that point due to the stress of worrying. Nathan stayed in the room with her to keep an eye on her. He soon needed to leave for a church meeting, so he picked up Hailey and Robert. The afternoon was pretty normal. Hannah took another nap on the couch, so we just left her there while I made homemade tortillas for burritos. Around 5:00pm I turned around to check on Hannah (because I heard a strange noise), and Hannah was in another silent, full body shaking seizure. This is the first time a seizure started in her sleep. Nathan got to her first and she was out of it after 2 minutes. Her temperature was at 104 but she was shivering. With her shivering so bad, I was afraid of a back-to-back seizure. We put cool, wet wash clothes on her to cool her down. It was wonderful to hear to scream and fight against that. You can't scream and be in a seizure at the same time. After she calmed down a little, she still twitched every 10-15 seconds for about 3 minutes.
We called the doctor again, but since he was no longer on call, he didn't pick up. We called a guy in our ward who is a nurse but he was working his shift, so I felt very alone and lost. This last seizure really scared both of us and Nathan was starting to cry due to all the stress.
Around 7:00pm we put the kids to bed and moved Hannah to the porta crib in our room. The doctor called back with no new ideas and our nurse friend said he will come by when his shift is done (8:30pm). He mentioned switching from Tylenol to Motrin and strongly recommended for us to get CPR certified. The need to use CPR is very real to us but we never thought about taking a class before. We got Hannah up at that time, so he could look at her. Her temperature was around 101 but besides being a little cranky from getting woken up, she was acting fine. We all went back to bed around 10:00pm.
At 12:30am, I was woken up by Hannah's strange noise. It's a gurgling noise of pure distress and panic because she can hardly breathe. I flipped on the lights to find her in another seizure. Once Nathan realized why I had the lights on, he also jumped out of bed and reached for her. He likes to put his fingers in her mouth to keep her jaw and airway open. Even though it only lasted a minute, we felt so panicked by it. Hannah immediately fell back to sleep, while Nathan held her on the couch and I went to Winco to get Motrin. Her fever was back to 104 and she didn't react to the wet washcloth this time.
Nathan took her to bed with him before I got back because she kept pushing him away to get away from his body heat. I took her back to the front room and got her to stay away long enough to give her medicine. Around 2:30am, the temperature finally started to go down and we both went back to sleep. However, even though I tried to sleep I just stayed awake trying to hear Hannah breathing.
We gave her Motrin every 8 hours and near the end of the 8 hours, her fever would start climbing again. The earliest the doctor could see us was at 3:20pm on Monday.
At lunch time, while Hannah was in her high chair, I went to clean up and when I turned back around to watch Hannah, she was just staring into space. She wouldn't blink and when I called to her there was no reaction of any kind. Her hand was holding the table, so I went and held her hand. Her arm was very stiff. Then 2 seconds later, she was out of it and just fine. I'm not sure if that was another seizure or not. Not all seizure causes a person to shake but with her shaking seizures, she was completely drained, and this one didn't have that kind of effect.
We went to the doctor's appointment and caught him up on everything that happened. He looked her over. Her ears were a tiny bit red and her throat was a little red also. His best guess is that there is a virus which starts with a sore throat and causes high fevers. We are going to go to Primary Children's Hospital in Salt Lake, UT to go to a specialist.
Monday night, Hannah still slept with us and we continued giving her Motrin. Tuesday, she is very clinging and doesn't have her balance back, but there were no fever at all. Wednesday, she is walking around just fine and eating like normal.
We are doing okay now but this is a very tough thing to go through. I always sing a song to the kids to put them to bed. Hannah's song is "you are my sunshine". I got very teary eyed to sing to her "Please don't take my sunshine away!"