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