The Grandest Mal of Them All -Part One

The day started off earlier than a normal Friday would.  My husband’s annual work gathering was the next day at the Santa Cruz Beach Boardwalk.  Since it fell on Gillian’s birthday this year we decided to make a fun event of the whole thing just for her, which meant a night in a hotel because she loves hotels.  So that Friday morning Nolan and I got up at 4:00 a.m. so we could take Howie to the train station to catch the train in to work and the kids and I would pick him from work that night and head off to the hotel which was about 20 minutes away.  The drive over to the Bay Area to pick up Howie was terrible.  The traffic was crazier then normal and I was tired because I’d been up since 4:00 that morning. (I’m normally not an early riser.  Anything before 6:00 a.m. is not okay with me or my body.). The traffic starts to pick up a little when all of a sudden I notice a commotion happening right in front of us.  I see cars veering off the road every which way and lots of dust.  In the 5 seconds I had to respond I thought of a million things.  I calmly told the kids to hang on because I was certain that we were going to get hit from some direction. My defensive driving training kicked in and I knew we’d fair better if we were hit from behind as opposed to ending up in whatever was happening ahead of us.  Fortunately 5 seconds later we made it through the whole ordeal unscathed and continued driving along with everyone else, never really seeing what the aftermath of all the commotion even was.  The kids went back to doing whatever it was they were doing.  I was shaking and stressed to the max on the inside,  “Oh my gosh, what if we ended up in a pile up?  What if something happened to my kids? My kids!”  I could feel the tears wanting to come out but didn’t want to scare the kids so I held it together and silently talked to God.  It was such a good conversation.  “God, I get it, I am not in control of my kids lives and their futures.  You, Lord, already know the number of their days and nothing I do can change that.  You know what is best for them better than I ever could.”  And in that moment I released my kids to God taking the burden of controlling it all off of my shoulders.   It was such a freeing moment.  It was a moment filled with an amazing amount of peace.  It immediately made me feel more love for God and more love for my kids.  

We continued our drive over to the Bay Area with no more excitement. Phew.  We did a little last minute back to school shopping before we had to pick Howie up from work.  Gillian was in a bad mood.  She didn’t want to shop, she just wanted to go to the hotel because that’s what we were there to do in her mind.  As we shopped she kept pushing and hitting Nolan for no reason at all,  I was getting very frustrated with her and we didn’t get much shopping done.  Finally it was time to get Howie and head to the hotel.  I figured this would make Gillian happy and she’d start being nice to her poor brother who had been beaten up by her all day.  

We were together as a family finally.....reunited and it feels so good!  Lol. We checked into the hotel and Gillian seemed much happier.  We were all hungry so off to dinner we went.  Dinner was nice and uneventful. Yay!  After dinner we noticed a yummy fro yo place near by so we walked over there for an after dinner treat.  As we were ordering Gillian decided to smack her brother yet again.  Sigh.  I was beyond my boiling point with this adult child now and was so happy that her dad was there to deal with it this time.  We got our treats and sat outside and enjoyed them and then headed back to the hotel where everyone was happy and having fun.  We all sat on the couch that pulled out into a bed and watched tv.  Most of us were falling asleep so we all ended up heading to bed early.  Howie and I headed off into the separate bedroom and the three kiddos snuggled in for the night on the pull out couch.

10:15 p.m. I hear Emma yelling something as she runs into our room. “Mom!  Somethings wrong with Gillian!  She’s making funny noises.”  I jump out of bed and wake Howie up as I run into the other room to see what’s happening.  As I turn the corner I see Gillian in full grand mal seizure mode.  We get her onto her side as she is foaming at the mouth quite a lot and we don’t want her to choke.  In my mind I keep reminding myself to stay calm.  Nolan is still sound asleep just a couple feet from Gillian so I tell Emma to wake him and take him into the other room so he doesn’t see what’s going on.  She knows this drill, sadly she’s had to do it before.  A few minutes go by and the seizing stops but she’s still stiff as a board and unconscious.  Howie and I look at each other.  “Do we call 911?”, I ask.  In the moment it took for him to start forming an answer she starts seizing again and his answer changes immediately,”Yes, let’s call 911.”  I go into robot get it done mode.  But, oh shoot, how do you call 911 from a hotel room phone.  Ugh!  I call the front desk and tell them we need an ambulance immediately and they take care of the rest.  Howie is continuing to hold Gillian on her side while she’s still seizing.  I’m running into the bedroom to throw some clothes on, keeping an eye on the clock to time the seizure,  while telling Emma what is happening and to keep her brother in the bedroom so he doesn’t freak out.  The 911 dispatcher calls the room and asks me what’s going on.  I fill her in, Gillian stops seizing again but she is still foaming at the mouth and she’s stiff as a board and unconscious .  Her breathing is very shallow.  Howie doesn’t leave her side at all.  Finally we hear the sirens outside the hotel and within minutes our room is filled with seven firemen.  Howie moves down to sit at Gillian’s legs and still won’t leave her side.  I stand above her and start spouting out the list of everything the first responders need to know....

19 year old female with CP, intellectual disabilities and a history of epilepsy.  She has been seizing on and off for for over 10 minutes.  Foaming at the mouth, stiff as a board and unconscious between seizing.  Her last grand mal was 7 years ago.  Her seizures normally present themselves us complex partial seizures.   She has had a runny nose for the past 48 hours but no other symptoms of being sick, no fever, no lethargy.  Her CP is left hemiparatic and only affects her mentally and not physically.  

The poor guy could barely keep up with all the stats I was giving him.  I was in special needs mom mode and I didn’t want to waste any time with him asking questions.  Gilly was still laying there totally stiff and unconscious.  I was at her head now stroking her hair and whispering in ear, as I always do when she has seizures, “we are right here Gilly.  We love you Gilly.  You’re going to be okay.  We are right here Gilly.  We love you Gilly.  You are going to be okay.”  The ambulance finally arrived and two EMTs joined the party of seven firemen in our room.  “How are her stats?”, I asked.  “Her heart rate is elevated but her temp is normal and everything looks okay.  If she starts to seize again do you give us permission to gve her meds?”. I responded immediately, didn’t need time to thing this one over, “yes! Definitely.”.  They load her onto the gurney as I’m trying to grab all my stuff to go with her and Howie and I are deciding if he should just pack up and the room and come to the hospital or leave everything there and we can come back later and continue with our regular plans of a fun weekend.  Then I hear nine first responders yell out, “she’s seizing again!”.  As I look over to Gillian on the gurney in the doorway of the room I see her arm go flailing to the side and hit the door.   One of the firemen is trying to get her arm back down inside the gurney so they can get her into the hallway where the EMT is now waiting to push meds to stop the seizing.  I look at my clock...20 minutes.  This has been going on for more then 20 minutes now.  Howie and I look at each other as I’m running out of the room following Gillian and we don’t even have to discuss it he just says, “I’ll pack it all up and we will see you at the hospital”. 

The meds kicked in before we were even in the ambulance.  She was now laying there peacefully.  Her body has relaxed, she wasn’t seizing, and there was no more foam coming out of her mouth.  She looked like she was sleeping.  “Deep breathes, Caroline, just keep taking deep breathes and stay calm .  You got this.”  The EMT interrupted my thoughts, “The hospital here in Santa Clara is on red flag which means we have to go somewhere else,  Do you want to go to San Jose, Fremont or ???”  (I can’t remember what my last choice was).  “Is she stable enough to go further away?”, I asked.   He said, “yes”.  “Which one is the closest?”, I asked not really able to think straight at the moment.  “We are actually, literally smack dab in the middle of all three.”  Geesh, this guy was no help at all.   “What are my choices again?”, I asked because, come on, like I was supposed to actually remember.  I thought he was just going to answer the questions for me.  “San Jose, Fremont or ???”  I thought each name for a split second and then blurted out, “Fremont, that’s like a second home” without even giving it a second thought.  Howie has worked In Fremont for a year and a half now and I’ve spent a lot of time over there in that year and a half and it has become more familiar and home like.  After making that decision I felt myself exhale and relax.  The ambulance pulled away from the hotel and we were on our way to the hospital.  It was now 10:45.  Just 30 short minutes since this whole ordeal started, yet it felt like it had been hours......