We were dealing quite admirably with becoming accustomed to Toby's disabilities, adjusting to what he can and cannot do, and although it was tough, we were coping as best we could.
But then totally out of the blue it started, nothing could or ever will prepare a parent for witnessing this.
We walked past his bedroom as we were putting Louis to bed and peeked in to check Toby was tucked into bed ok, and that is when the nightmare that we are currently living began.
We found Toby in bed, face down, having a massive seizure – Ian ran to call an ambulance,
whilst I placed him on the floor in the recovery position. His eyes were open, but he was not looking at
me – he could not see anything, his whole body was in a convulsive state - he went stiff, he shook and then relaxed, and this cycle continually repeated itself, he
had been sick, he was sweating, and the worst thing was his breathing - it was
hardly there. Tiny tiny little gasps,
that were barely audible. Ian brought me
the phone to speak to ambulance control as they made their way to our house.
Other than the recovery position,
there was nothing I could do – I kept tilting his head up to make the most of
his airway, he was starting to turn purple in front of me. Louis stood on the landing watching
helplessly, we were all crying uncontrollably – In those tiny moments my mind
started to play games on me, making me face fears of what life might be like
without Toby. Ian was out on the road
waiting for the ambulance, and then three arrived.
They ran into the house and took
over Toby’s care, after administering meds, they ran out of the house with him
in their arms and all three of the crews came with us in one ambulance to help. I was inconsolable, and one physical reaction
that kept overpowering me was the urge to be sick – I sat with a sick bowl,
holding Toby’s hand, telling him mummy was there and promising that I would not
leave his side.
When we got to hospital the meds
had started to kick in, and the seizure was measured at >22 mins as were not
sure how long he was fitting before we found him.
We were then told never to leave
him at all alone – he had to be watched and monitored the whole time as this
could happen again. Our world completely
fell apart – this was not meant to happen, we were dealing with his
disabilities, but this was a whole new dangerous experience that meant at any
moment we could find ourselves mid seizure and face loosing him all over
again. How did we prepare for this? How did we organise life to make sure Toby
was always going to be safe?
As Toby went to bed at 6pm on an
evening, we made a bedroom for him on the dinning room, one person would have to watch
him constantly all evening, swapping seats if we needed to go to the toilet or needed to leave the room - all phones needed to be charged up, an emergency
hospital bag containing all we needed by the door, a list of Toby's medical history and meds and
phone numbers of family to call, was by the door. One very sound thing that I did, and by far the best advise that I can ever give anyone who is ever in our desperate position is to sew small silver bells onto the arms
of his pyjamas so that if it happened again, we could hear it.
When we went to bed, we would
then carry him up into our bedroom, with nightlights all around, I would sleep
by his side ensuring I was alerted immediately if something was to happen. Every night, I set out clothes for me to
quickly change into should it happen again. Our lives had changed forever, our lifestyle could never be the same again, we always had to ensure we were no more than a few mins away from a hospital A&E dept, he could never play unsupervised, I could not allow him any independence or freedom.
Then nothing for 2 weeks.
Saturday 28th Nov - it happened again, this time he
was asleep in the dining room early evening. Something made me sit and stare.
I noticed his arm starting to twitch beneath his duvet. I turned the light on, Toby woke up and was laughing at his arm. I called for Ian to ring 999, we explained to
the operator what was happening, someone was with us within 4 minutes. Toby was still sat up laughing at his funny arm when they grabbed him and ran out to the ambulance.
Then Toby lost consciousness, and it all started going horribly wrong
again. I knew how serious it was when
the paramedic knocked on the driver window and told them to “start to go through the red
lights”. Yet again, I was on the brink of vomiting – why did this keep
happening??? We arrived at A&E, the crew
jumped from the ambulance, not waiting for the ramp to go down, with Toby in
their arms, I ran after them, there was a whole team in resus waiting for us,
luckily there was a paed anaesthetist on call, who took over Toby’s breathing,
and all I could do was stand and watch it all unfold in front of me. It was not like in the movies where they
asked you to leave; no-one seemed to notice me stood holding my bags, tears
pouring down my face, and my world about to end. They were all so busy, trying to save
him. I could not even get near enough to
touch him, all I could do was stand there and shout in the hope he could hear me, that
“mummy's here and I'm not leaving”
Ian and Louis were taking an age
to arrive. They were stuck at reception, giving details of Toby’s history.
This seizure lasted 47 minutes,
before they could stop it – once stopped, he was assigned his own nurse for the
remaining 5 hours that they kept us in resus, they then transferred him to the
neurology ward to recover.
It took two days for him to
regain consciousness.
This first night, once in bed, the
nurse encouraged me to climb in with him and try to comfort him as best as I
could. Toby was screaming every time
anyone went near him, he did not recognise me, he ground his teeth, he grunted,
screamed and kept being sick – this was total hell! Ian was not allowed to stay, and I had to
deal with it alone – I was so unprepared – I just held him and silently cried
the whole night, thinking that we would not see or be able to connect with our little Toby again, as I
felt sure he had suffered some sort of damage this time.
Gradually over the next few days,
he woke up more and more, he started to eat, and then started to talk, he was
coming back to us, slowly, slowly.
But how in the hell do we move
forward from this???
We were assigned an epilepsy
nurse, Toby was officially diagnosed with epilepsy, we were trained on how to
resuscitate him, and administer emergency meds, and given protocols to
follow. He was not allowed back to
school until staff were trained on what to do in an emergency.
His latest seizure was on 28th
Nov 2009 and since that day, combined with the daily anti-epilepsy meds that he
must now take, we have been seizure free.
That does not mean for one minute
that we can ever relax. Every single
night when I kiss him goodnight, a part of me fears that should the seizure
monster strike again, that I will never see him again. We have installed a bed seizure monitor, we have an digital audio intercom that allows us to hear every breath in his room, and he also wears his bells on his pyjamas. Every
morning, when we all wake up together, I thank God that we have safely made it
through another night, and so another day begins, as does the constant watching
for the signs of a seizure, we make it through the day safely, and then bedtime
begins again. I would not wish this
seizure nightmare on my worst enemy!
