Kenzies Seizure

So I guess I should start from the beginning to give everyone the full story.  On Wednesday Kenzie went to preschool as normal but I started to get reports from them that Kenzie had a low grade fever and a runny nose and that I should probably come get her.  So I went with my mom and picked her up and brought her home.  Kenzie was all about the snuggles and yawning nonstop until she fell asleep sitting next to me.  Luckily at this point Kaitlyn came in the door from getting off the bus because within ten minutes of her nap starting, Kenzies eyes shot open and she started looking around but was obviously not alert and unresponsive.  I observed her for about 30 seconds doing an assessment on her when the full grand mal seizure set in.  All bets were off then so I contacted Cyndi quickly and got an ambulance coming.  I brought her straight out to the ambulance [again with a couple firefighters on board who knew me] and started our ride in.  On the ride in Kenzie was continuously seizing despite being administered medication to stop it.  Upon arrival at Maine Med we were direct admitted into the pediatric side of the ER and Kenzie was given more medications to stop the seizure.  Those didn't work either.  After consulting multiple doctors and the neurologist on call who came into the room as well, another medication was administered that luckily stopped the seizure about halfway through administration.  At that point the seizure had lasted for a little over 40 minutes.  Seizure was done, Kenzie was stabilized, but still unconscious.  We were then moved to the Pediatric Intensive Care Unit [PICU]  at Barbara Bush Children's Hospital which is within Maine Med.  Kenzie was monitored here, along with an active EEG  monitoring her brain function to make sure she wasn't seizing.  Probably around 10 to 1030 after being moved around by the nurse, Kenzie woke up.  She was very angry and confused, and the nurse explained that it was like waking up with the worst hangover ever.  The effects of the drugs would last days.  So not much sleep was had that night, I was finally able to get Kenzie to fall asleep after getting into her bed with her around 4am where we slept until about 7 or so.  Kenzie underwent numerous tests including an MRI that day.  They were able to stop the EEG  that morning as her brain waves appeared normal.  The MRI happened in early afternoon, and required Kenzie to go under general anesthesia , and so again late Thursday afternoon she woke up slowly and confused.  The good news is that after that Kenzie could eat again, starting with chocolate ice cream, followed by grilled cheese, applesauce, and finishing the evening by eating some of mom and dad's chocolate pudding.  Those were very good signs.  Thursday night was better, although I spent the entire night in her hospital bed with her.  She slept fairly well until the early morning hours when her nasal congestion started to anger her. 

It is believed that either an ear infection or just a normal viral cold started the wheels turning on this.  Because it's hard to say which one Kenzie has been put on antibiotics as a precaution.  Everything this morning looked good so Kenzie was good to go for discharge.  Dr Rodan will probably receive a DVD of the MRI sometime next week so we haven't been able to discuss the results with him yet.  The local neurologist with whom we have been speaking through all of this showed us some images from the MRI.  What it shows is somewhat shocking.  The areas that were shown as affected last year with damage are now not as much and it is flaring up more on the opposite side.  So it seems to be fluctuating , and in some areas that were damaged or believed to be dead brain cells that have possibly healed.  What all this means is not known yet.  It is very unusual , but seems good that it is fluctuating as opposed to just growing in size.  I am waiting to hear how Dr Rodan reads the disk, and will update everyone when we hear from him. 

Either way Kenzie is home.  She is still very much under the influence of the drugs and is very unstable in  movements like crawling or balance control.  She ate fairly well today and is upstairs resting now.  She will bear watching until we get past this cold, but it seems every cold puts Kenzie at a sudden heightened risk of seizures.  It is possible Kenzie will receive a medication such as a sedative so that if Kenzie gets a cold it may head off a seizure.  It is a step not taken lightly as such drugs are powerful, but versus another seizure event seems to outweigh it.  I will say all the staff at Maine Med were great, especially the nurses in the PICU.  Kenzie even received a special quilt that all the children get when they are admitted.  They are made by volunteers and donated to the hospital.  All in all it went well, and staff gave us a pretty thorough tour as unfortunately we are likely to return there at some point.  It's been an eventful past couple days and I'm not sure if I missed anything.  I'll update this or post a supplemental blog if I think of something.  Thank you everyone for your healing prayers and thoughts.  It has been exhausting in all regards, but the outflow of love and support from all of you makes it all a bit easier.  Thanks again... now try to focus on Christmas!