...marked the 6 year anniversary of when Emily was diagnosed with Epilepsy. Below is the entry I wrote after her first seizure:
On Sunday afternoon/evening, Ryun cleared Emily's room and painted it to match their new furniture/bedding sets that we will be setting up soon. Because the paint was still wet( and the fumes still strong) we set Emily's bed up in Katherine's room for her to sleep in there. They were so excited to have a "slumber party"...it was so cute.
Twice during the night Emily came down to our room...once to go to the bathroom(there is one in the hallway upstairs I think she just wanted to come down and say hi) and once just because. When she asked if she could stay down with us, the first time I said, "No, go ahead back upstairs...Katherine might be sad if she wakes up and doesn't see you there for your slumber party." She was fine with that and went back up. A few hours later( around 5:00 am or so) she came back and asked if she could stay again. I said the same thing about Katherine being sad but at the end I said, "It's your choice though...you can stay if you want to."
Thank God she did.
When Emily came down the last time, Ryun was just getting up to leave for work. She jumped in to his spot in bed and started asking me all kinds of questions...What time is it? How many minutes until we get up? Do I start swimming lessons today? I answered her and finally said, "Ok Em, it is time to go to sleep."
At about 8:00(Katherine had come down about 1/2 hour earlier when she woke up) she and I were lying down in bed talking quietly when Emily made this noise that kind of sounded like she was clearing her throat, but sort of sounded like she was gurgling water too...hard to explain really. Katherine asked me what that noise was and I said, "that was just Em."
Seconds later, my bed started to shake. I immediately jumped out of bed and went to Emily was was shaking rather violently and, for all intents and purposes, unconscious. Her eyes were open but mostly rolling back in to her head and she was drooling. I rolled her onto her side thinking she might be going to vomit. I called her name(yelled it actually) a couple of times with no response and immediately called 911. I kept trying to call Emily and when the shaking finally subsided(seemed like forever but it really only lasted for maybe 1 to 2 minutes) she was just staring in to nothing. Her eyes were on me but it was like she was looking right through me. I kept calling her, saying her name asking who I was, and at the same time running around my bedroom getting myself and Katherine dressed, calling my mother to come take Katherine for me, and calling Ryun to tell him what was going on and to meet us at the hospital. At one point, just before the ambulance arrived, I managed to get her to mumble "mama" but it was incomprehensible and if I hadn't been asking her to say it, I wouldn't have even known what she was trying to convey.
The medic came in and by this time, she was starting to come back around a little, but still not quite back to reality. He gave her a quick once over in the bedroom(checking her pupils which were completely blown, having her stick her tongue out and checking to see if she wet herself, which she had not). The EMT came in with a stretcher and took her outside.
When we got outside, the police officer that came with them asked me a few questions(her name date of birth etc) and when I turned back around to the stretcher, Emily was fully awake and crying. I don't think I have ever seen her so scared in my life...and I can't explain in words how that made me feel. I of course went right over to her and told her she was okay and that we were going to go (together) in the ambulance to the doctor. My neighbor took Katherine for me until my mother arrived(about five minutes later or so). While in the ambulance, before we left, the medic started an iv(just in case she had another episode on the way...with the iv in place they could medicate her immediately). She was still pretty upset but I kept rubbing her head and telling her she was ok and that "Mama was right here and not going to go anywhere."
She started to calm down about 5 minutes into the ride and was definitely coming back to reality.
After she was settled and the iv was all set, the medic asked me a few questions(name, birthday, insurance etc) and she was trying to answer every question. I knew for sure when she started talking she was back to being my Emily.
And I was never, ever so thankful in my entire life.
When we got to the ER, they drew blood, took x-rays, gave her a CT, and a quick once over to see if she had any obvious signs of illness(rash, bug bite etc). When checking her ears, the doctor was beyond shocked that she had not been complaining of ear pain. In a nutshell, her ear had just about the worst infection the doctor had ever seen. She had a slight fever.
The blood work and CT came back fine but her chest X-ray showed a small case of pneumonia. She had been coughing for a few days with no other cold symptoms at all...not even a runny nose so the pneumonia diagnosis was rather shocking as well.
Because they still could not identify any real cause for her having a seizure, they wanted to consult with her pediatrician. He wasn't on, so they talked to another pediatrician in the practice, who recommended that she go home, be seen in the office tomorrow(which is now today) and at that time be scheduled for an outpatient EEG.
Before they had consulted with him, they started her on an iv with a medicine called "Rocephin" to help clear up the ear infection/pneumonia). About ten minutes after they started it, Emily started to complain that she was itchy. I lifted her shirt and the poor kid had hives all over her back and chest. She was allergic to the medication. The doctor/nurse came in and gave her Benedryl and a steroid to stop the reaction and it worked almost immediately. The hives were gone with in minutes. We of course had to stay around for awhile to make sure she was alright and they sent us home with a prescription for a steroid and told us to give her Benedryl every four hours.
We blew up the air mattress and set her up in our room to sleep.
It is now almost four o'clock in the morning and I can't sleep, despite being exhausted after our long day at the hospital. I crashed on the mattress with her and have been waking up every time she moves at all...even just the slightest movement.
I hope that her EEG comes back normal and that the seizure was just a "freak, one-time thing" for her sake of course, and I have to say for mine as well.
I can't explain the fear that was running through my veins when I watched her go through that. She had no idea who I was. She was not responding to me at all. She was shaking so violently that my entire bed was moving.
If I never, ever have to witness that again, I can honestly say I will die a happy woman.
Regular readers know that this was the beginning of what would turn out to be a long process that ended, after EEG's, EKG's, MRI's, blood work, and genetic testing with a diagnosis of a "Tuberous Sclerosis-like" condition. What the above entry does not mention was that at the time all of this was going on, I was just over 8 months pregnant with Julia, and maybe the only pregnant woman in the history of the world who prayed that the baby didn't come early, at least not until things had been figured out with Emily. I had no idea at the time that things really wouldn't ever be figured out. It's an anniversary no doubt, not exactly a happy one to recall but worth mentioning just the same.