The Christmas Roller Coaster!

My sweet girl, Olivia, livened up the Christmas festivities for us and some very dear, long-time family friends of ours when she went into a status seizure at their house Christmas night.  She was sitting in the lap of one of the women looking up and off to the left (and was across the room with her back to me).  She wasn't really moving too much and just kept looking up at something.  After a few seconds, I asked what she thought Olivia was looking at--from my vantage point it looked like nothing but wood paneling to see.  She just thought she was looking around at stuff.  I waited a few seconds more, and Olivia was still stuck like that with very little movement.  I walked over to her and sure enough her eyes were stuck looking up to the left.  She was making a few very slow spacey movements like smacking her lips and kind of picking at her shirt with her hand.  I had seen a YouTube video of a seizure like this before, but had never seen Olivia have one.  Realizing that she had now been having it for several minutes without stopping, I began to feel the panic rising in my chest.  I had no specific protocol for this new type of seizure, but as I believed this was becoming a status event (in this case a continuous seizure), I just decided to treat it like all her other status seizures--which have all been tonic-clonic (grand mals).  I took Olivia and her emergency medication and went into one of the bedrooms.  One of the women there is also a nurse, my childhood friend Megan, so I called her to come in the room just to help monitor Olivia's respirations as I gave her the emergency medication, Versed.  I also decided to have EMSA called.  The emergency medicine appeared to have no effect, and the seizure was progressing to now involve tonic-clonic movements (the jerking/convulsing).  I was worried the medicine might not work because Olivia has had such nasal congestion from allergies, and her medication is administered in the nose.  Her neuro later confirmed that the congestion is most likely what kept the med from stopping the seizure. 

After a rocky episode with a couple of the EMSA workers (sometimes it's smooth sailing for us and sometimes we get those know-it-alls who don't really want to listen to the very important special instructions that go along with Olivia, PER HER DOCTOR.  But, that's a whole other blog post by itself.), we made it to the emergency room by ambulance with Olivia still seizing.  They got an IV placed, and proceeded to have to administer soooooo much medication it was bewildering.  But we had done this before, and I wasn't surprised it took so much medication.  Because she was having a status complex partial seizure (as opposed to her usual grand mal), the ER doctor was able to give the medication at a more steady pace as opposed to just snowing her with it.  By going the steady route, he greatly reduced the chances of Olivia having to be intubated.  I was totally on board, as long as it was safe seizure-wise, with anything that would keep her off of a ventilator.  I did NOT want to relive that experience.  Not on Christmas for pete's sake.  Not ever, actually.  Once is enough for us, thank you very much.  But, reality tells us we have more tickets in that lotto coming our way.

After a total of an hour and 35 minutes, her seizure was finally stopped.  And, I started to breathe again.  A little bit.  The bottom line for people who have the type of epilepsy that Olivia does, is that the seizures have to be stopped sooner rather than later.  The longer they go, the MUCH harder they are to stop, and of course more dangerous.  The docs wanted to keep her overnight since she'd had so much medication.  She woke up about the time we got to the pediatric floor, and she stayed awake the entire night.  The nurses couldn't believe she was awake after all those drugs.  I hated that she was awake, because I knew she had to be miserable, but I wasn't really surprised.  She is an ox.  She was experiencing Tod's paralysis on her left side, the side that had been seizing, for most if not all the night.  That was a new thing for Olivia, and another thing I had only heard about--thankfully!--from a dear friend, so I knew to remain calm about it.  I cannot tell you how invaluable the information and insight is that I have gotten from the parents of other epileptics and epileptics themselves.  Reading their blogs, watching their YouTube videos and reading web page forums has proven to be both life-saving and peace-preserving for Olivia and me.  I strongly encourage anyone with a story to share and the ability to share it, to please do so!!  There are people out there who need you.  People like Olivia.  People like me.

Maybe someone like you needs to hear this story I am telling now, so I will continue.  I am sorry it is lengthy, I will try to keep it on point.  As I said, she stayed awake the entire night.  She finally fell asleep about the time she normally wakes up (8:00a), and slept for several hours.  When she woke, the paralysis had resolved but her left side was much weaker than the right, though she was VERY weak all over.  She couldn't walk, couldn't really stand, but could sit up if positioned by someone---pillows had to be all around or a person nearby because she would easily topple.  She was still vocal and even verbal but mostly babble with a few of her words mixed in---lots of Ba, Ba, Ba, Ba or Da, Da, Da, Da.  Her appetite was strong but it was hard to keep anything down after all that medicine.  So, there was some vomiting for the first two days.  I just figured out to limit her liquids on an empty stomach.  Plus, while she was in the hospital, they gave her some Zofran (anti-nausea), which helped quite a bit.

By Monday, she was able to walk with assistance, was able to eat without problem and talking was improving even more.  The most significant thing still lingering was the fatigue.  She could only tolerate being awake a few hours at the very most.  She still does the extra-clingy behavior, too, that she has done ever since her very first seizure.  This amounts to her pretty much not allowing me to put her down AT ALL.  Sometimes, not even when she is asleep---she would wake up as soon as I put her down.  This is a hard thing to work around for a single person, let me tell you!  Plus, little miss isn't so little anymore.  But, I am trying to figure out little shortcuts for things all the time to keep life running smoothly, especially in these times when she is extra, extra high maintenance.  Every day since Monday, she has shown improvement in all areas.  She can walk by herself again today (Wed), but she is still more wobbly.  Her SMO's (ankle braces) have been such a huge help!  She is still a little more babbley rather than using her actual words--in contrast to what she was doing this time last week.  And, she still is more tired than usual but much better than she was Monday, for example. 

So, I would say she is pretty well on schedule for her typical bouncing back from a bad seizure and 2 weeks from now it will be hard to tell she is struggling.  Only I will be able to notice some differences, I bet.  I hope.  The biggest thing to suffer long term always seems to be language, but she is in speech therapy twice a week now.  So, I am very hopeful this will be a powerful tool against hits like this to her language ability.  She has already had two sessions this week, and I think it has been helpful to get her back into the routine.

I am going to end this post now, because I am tired of hearing myself talk--in my head of course.  I don't actually sit here typing, talking out loud.  :o)  And, because this post is VERY long.  There is quite a lot going on with my girl, so I will try to post again very soon.  Some very wonderful positive things to post......and some pretty heavy things to post.  (And just maybe my EMSA rant, too--ha) 

We shall talk again soon, my friends.