Thursday, January 10, 2008

Big day ahead of us....



Please say a prayer for my little princess Jaree! She is going to have her 4th sleep deprived EEG today. As most of my blog readers may know, my daughter suffers from an atypical epilepsy. This means there's nothing that shows up on and MRI, Catscan, or EEG, that would suggest an abnormality in the brain. However, she keeps having seizures. Jaree had a first seizure at 14 months. She had just taken the varicella (chicken pox) vaccine and 24 hours later she had a very high fever. At the time, Jaree was in day care and I was not notified that she was sick or showing symptoms of being sick. I always checked my babies temp in the morning to make sure they were not sick, because when my children get sick, they GET SICK!!! So, when I picked her up, she looked normal. In fact, I picked her up early that day, as I got an early quit from work. She looked so beautiful like she normally does. I gave her a gazillion kisses as always, and loaded her in her carseat. Dh was off that day too, so we picked Bee up from school, because Jariel was also in daycare with her. We headed to the local Wal-mart and Jaree was playing and trying to grab the clothes off the racks as we rode by in the cart. I was looking for some shirts for the boys ...when it HAPPENED. Jaree's head was flung back and I pulled her arms, because I thought she was being silly. Her eyes were rolled back and she was foaming at the mouth. My immediate reaction was that she was choking. So I took her out the cart and turned her on her stomach, and tried to get whatever the heck, she was choking on out of her mouth. She started convulsing and I panicked. I ran with her in my arms, screaming call 911. I guess I was so hysterical, the lady at the front desk panicked and just froze. I remember yelling at her, to get off the phone and call 911. Then, an angel walked in. A lady walked in with a newborn baby, she looked over and saw Jaree and took over. She turned Jaree on her side, and made everyone get back. She asked me what her name was and through teary eyes and a shaky voice I told her. She talked very calm, to both Jaree and myself. She summoned someone to go back to pharmacy and get a suppository, which she immediately gave Jaree. She had someone call 911 and the paramedics arrived shortly after. Once the paramedics arrived she told them that Jaree was having a FEBRILE SEIZURE, she was talking very technical and I realized she was in the medical profession. Turns out she was a RN. She had just had her baby 1 week, and was not even supposed to be out. She was sneaking out of the house just to get out. Finally, it dawned on her that she didn't have her own baby and then she got emotional, but as luck would have it, someone pushed her baby away from the entrance door, out of the way of the cold and stood beside the very tiny baby. Her NURSING SKILLS took over. As they were loading my baby into the ambulance, she knocked on the doors and told me that Jaree would be fine, I hugged and thanked her, but never got her name. I truly believe she was Jaree's guardian angel. Because the paramedics said that Jaree would have truly died of asphysixia if she hadn't showed up, because she had aspirated into her lungs.

That was one of the SCARIEST moments of my life. Jaree was comatose for almost 48 hours after that FIRST seizure. I wanted her to just open her beautiful eyes... I never left her side.
We started to notice pus-like bumps on her stomach and lip. Very few, but she had chicken pox. She also had double pneumonia from aspirating into her lungs.

At that moment, I began to prioritize what was important. MY JOB or MY CHILDREN. I loved my job, I was making really good money. I was starting to get my life together, however I truly feel if Jaree wopld have been at home, I would have noticed she was getting warm or I would have noticed that she was listless and sleeping too much. Jaree was not a baby that slept during the day....she took cat naps! No longer than 30 minutes at a time. I later found out that Jaree slept that entire afternoon until the evening when I picked her up.

I turned in my 2 week notice and quit my job. Dh and I decided it was the best thing to do. He was working at Carmax at the time, and was making a pretty good living, so we struggled at first but, things got better.

However, Jaree has had a total of 11 seizures since that day.

One just before Christmas, and that is why we are going to have yet another EEG.

I pray to God that they don't find anything, but at the same time, if they don't find anything, why does she keep having seizures.

Another thing is that they have all been FEVER related seizures. She has never had a seizure that didn't accompany a fever...

But she is almost 9 years old.

9 year olds are not supposed to have seizures....

It is not the norm!!!!

I will keep you posted!

I ask that you all keep us in your thoughts and prayers...

Thanks in advance!

4 comments:

Adrienne said...

Already done girl!!!

Cynta said...

will be praying for the best results possible, my husband has Juvenile Myoclonic Epilepsy, and I know how frightening the whole experience could be

Darcey said...

Your in my thoughts and prayers. Good Luck!

Vee said...

hugs, prayers sent!