This summer has been a whirlwind of an adventure, and not an
adventure that any one of us wants to have again, especially Mighty Z. We
started the summer in regular fashion, full of ideas of seeing all of Dallas’s
little hidey holes, exploring the Arts District, the new museum that just
opened and hopefully, having a little summer excursion away from Texas. Unfortunately,
less then a month into summer, all our plans
came to a screeching halt.
The tumble down the rabbit hole started with Mighty Z’s loop
recorder that was placed in her chest in April.. Which, as many of you have
read in earlier blog post, led to Mighty Z having a cardiac pacemaker, going
into respiratory acidosis, almost dying from that, then going to another
cardiac pacemaker ‘redo’ because when
the ICU doctor was resuscitating our Mighty Z, one of the leads fell out of Z’s
left ventricle of her heart. Just when we thought all the drama was over,
Mighty Z had her first seizure.
The seizure episode started on a night like every other: uneventful. I had placed Mighty Z on her
breathing pacemakers and put on her pulse ox probe (to monitor Z’s oxygen
levels and heart rate) gave her all her medications and breathing treatments. As
usual, I went to clean the kitchen while Z watched a little T.V. before bed.
All the sudden I heard her alarms go off -- frankly, I thought Z was just
moving around and the monitor was just not picking up (which is common). In true perfect ‘mom style’ I said loudly to Z “put
your leg straight so the monitor can pick up the signal!”
Usually this is met with Z saying “okay, okay,” however,
this time I was met with silence. Thinking that Z had her headphones on, I went
in to check her and there I found Z’s legs and arms in odd angles and Z pale covered
in a sheet of cold sweat and staring out into space. In the beginning, although
she couldn’t look at me, she was answering me in a monotone voice. I calmly
placed some oxygen on Mighty Z and then rolled her to her side, called 911 and
that is when Z began to start twitching first in her face and later on her eyebrows,
torso and arms. Z was completely nonresponsive while this was happening.
As I held my sweet Z while waiting for the ambulance to
arrive, my thoughts turned to Lala, who was there running around grabbing my purse and
some items for me to take. Lala was perfectly calm but my thoughts were torn
because I could not leave her alone yet, and I could not leave Z alone either. As I wrestled within myself on how I was
going to care for both of my girls, my sweet, sweet friend T, had just driven past
my house from the gym and saw the ambulance and stopped. Relief flooded my
heart as the paramedics were placing Z on the stretcher and as soon as I saw T,
I knew that Lala would be cared for while her Daddy came home from work.
Long story short, Z had a focal seizure and her EEG report
came back with generalized spiking all over. We had two choices on how we could
move forward: one, we could wait and see if she would (and according to the EEG
she would at some point) have another seizure and then diagnose her with
epilepsy and then start her on antiseizure medication, or, two, be proactive
and call it what it was (epilepsy) and start her on the medications right away.
The reason I went ahead and started her on the medication is because I felt
during this first seizure we had been blessed that Z was on her machines and
monitors when it happened -- what if next time we weren’t so lucky? And my
philosophy has always been “try to be
proactive and not reactive.”
Whew! That was over and we all thought that our drama-filled
summer was at an end and we finally welcomed the thoughts of school and fall. Mighty
Z was to start at her new school, I was to meet with her new teachers and calm
down any fears or concerns, and all would be well! The new school was proactive
and actually looked up and researched her disease and quickly came to realize
how medically fragile our Mighty Z is and their concerns began to grow. I will
say that on paper Mighty Z’s syndrome looks horrific, but in actuality it isn’t
as dramatic as it sounds. Of course this is coming from a momma that has been
dealing with it for twelve years and so it is no ‘big deal’ to me. The new
school decided they couldn’t handle even the thought of having a child like Z
in their school, even though Z had never had an issue at any of her other
schools in regards to CCHS (congenital central hypoventilation syndrome).
After begging, pleading, and practically bartering. The new
school allowed Z in class with some stipulations. First, Z’s big doctor had to
call one of the Board of Trustees (who happened to be a doctor at Scottish Rite
Hospital) and tell him all about Z’s condition and write a letter as well. Second,
I had to send ALL of Z’s medical records to that same doctor and to the school.
And finally, I had to be at the school during P.E. (why just P.E., I have no
idea).
Why you ask didn’t I just find another school, or just home
school her? Well I truly feel it is important for Z to be at this school -- it
will provide many things that Z needs to push her to the next level
academically and socially.
I am hoping and praying that Fall is kinder to us than Summer was, and that we can go back to just being a normal family that happens to have a child on life support machines.
edited by Linda Kruger
