Expect the Unexpected {The Next Episode}

I ended the last post with the occurrence of another big episode…

I would love to tell you that this was easier to watch but that was not the case.  Although we were prepared {kind of} for this episode, it was just as scary.

It was Deja vu…

The kids were put to bed around 7:30ish.  My husband and I were ready to relax for the night. I got my pajamas on and was going to lay down in our bed to watch t.v. while my husband went to play video games in the basement {far from “gamer”, but he plays videogames from time to time}.  Right around 9:30ish PM a scream/cry came from my son’s room.  My heart dropped, it was all too familiar.  I am not sure if it as my motherly instinct or the memory from the last time, but I KNEW even before I opened his door what was happening.  I ran to his room, threw the door open and flicked on the light.  As I looked into his crib, his eyes were shut and body was making stiff movements but he was screaming {kind of mimicking a night terror}.  I called his name with not response.  I picked him up just as my husband ran into the room.  Our baby boy went limp, yet rigid and his eyes were open {it’s VERY hard to explain}.  My husband dialed 911 from my phone as he attempted to video this episode from his.  In the midst of this episode I was trying to note in my mind what was taking place as I knew the neurologist would ask questions and I wanted this to be resolved.  The remainder of the time before the ambulance arrived is blurred but I do remember it taking about 10 minutes for them to arrive {the video was at least 5 minutes long}.

As I rode in the ambulance with my little guy I started to feel a sense of relief as this was the second BIG episode and THOUGHT this time the doctors might take his case a bit more seriously…

In the ambulance, my baby boy received oxygen as he was having a hard time catching his breath {he was gasping every 15 seconds or so}.  We arrived at the hospital and placed into a room within the ER.  The nurses came in and asked me questions about the episode and then the ER doctor.  We stayed for a few hours and I thought FORSURE that he would be admitted for more of an extended stay since this was the second time a BIG episode occurred, I was wrong.  The doctor came back into the room and informed me that he would be sending us home and that I would need to observe him over night and call the neurologist in the morning.  I was baffled, confused, but trusted the doctor.  I did ask him to call the neurologist as we were just there less than 48 hours prior to this episode occurring.  He said that the neurologist would be “unreachable” at that hour and he was the ONLY pediatric neurologist in the area {I know , I was shocked too!}

So, that’s what we did, we went home…

I called the neurologist in the morning and left a message for a the nurse to call me back, explaining what had occurred in the message.  Much to my surprise the neurologist himself called me back!  I was shocked as usually doctors {in my personal experience} are NOT the ones who call you back, but the nurse.  He was FURIOUS.  He kept saying, “They didn’t even try to call me.  I am his doctor.  This could’ve been resolved!”  I explained to him that the ER doctor failed to call him and said that he would be “unreachable” at that hour.  He was not too happy and assured me that he would be calling me back soon.

The neurologist called me back and wanted to admit him ASAP to the Pediatric Intensive Care Unit {PICU}…

Again, I felt relieved.  I felt that the hospital would be the safest place for us to be.  I did not care if we had to live there for a month.  My husband came right home to take care of our 3-year-old while I packed our bags and headed to the hospital.  My little man was hooked up to a video EEG that would monitor his brain waves for an extended period of time {he looked like a mummy}.  My husband met me at the hospital a few hours later after we figured out care for our little girl.  We were pretty much isolated to the PICU room as there was also a video monitoring his every move.  We were there for three days and nights without an episode {of course!} and released as there was no abnormal waves on the EEG in that period of time.  I felt a little disappointed {I know I should’ve been happy that there was nothing abnormal but I wanted answers}.


We were sent home with a list of doctor referrals to start ruling out possibilities …

Any questions so far?  If you have medical or personal experience in something like this, please let me know. 

~Thanks for stopping by~




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