4th of March is a significant date in our family as two years ago today, we saw the outcome of the most difficult decision that we have ever made as a couple : on 4 March 2014, Joshua underwent brain surgery at Great Ormond Street Hospital in an attempt to remove, or at least reduce, his epileptic seizures. It was not a decision we took lightly, it was something that we had discussed and argued about for well over a year before we agreed to go ahead. Having said yes, the date came through really quickly as we wanted to have it done by an eminent surgeon, before he retired.So there was no time to back-track.
We drove down to London to have a final pre-operation meeting with the surgeon in the afternoon, when Joshua obligingly had a seizure just to remind us, if ever we needed it, why we were taking this radical action. We stayed overnight in the ‘patient hotel’ so we took Joshua out to Pizza Express for a treat and he had no understanding of why we were in our capital, but seemed to enjoy the night out with his parents, who were unusually quiet and distracted. We had to be on the ward early the next morning and then simply wait for Joshua’s turn and of course he was nil by mouth then. It was not long before we were taken down to theatre where Joshua had his intravenous anaesthetic – I am always shocked at how quickly it knocks him out and he becomes lifeless before our eyes. We kissed him goodbye and hoped and prayed that we would soon have our precious son back with us.
We then had four hours to occupy ourselves in central London and were advised to get out of the hospital, otherwise the time would drag. we took them at their word and hired ‘Boris Bikes’ and we cycled to Covent Garden, along very busy roads. My mum jokes that we were more at risk doing that, than Joshua on the operating table having major brain surgery. It may have been foolish and risky, but as it was so terrifying, it was also a great distraction as it required full attention, which did not leave much brain-power to worry about Joshua. Once in Covent Garden we had a coffee and a crepe and bought Joshua a monkey cushion for his 13th birthday, which was the day after. Then we got more anxious and cycled back to Great Ormond Street and spent the rest of the time waiting on the ward.
We were called down to Recovery eventually, where Joshua did his usual trick of being reluctant to come around and of his heart rate slowing right down, enough to cause medical anxiety. But finally they were happy to let us take our son back onto the ward to sleep it off and to wake up gradually; I have never been so pleased to see his clear blue eyes and his smile when he woke up later in the day, all connected to tubes and drains. Then the reality of the choice we had made, dawned on us properly.
So two years on today, I am often asked if I would have made the same choice knowing what I know now and the honest response is that I am really not sure, as there have been both positives and negatives since his hemispherotemy. The pros are that :
- Joshua now has fewer seizures, while he was having 6-8 everyday without fail, he now has the relief of seizure-free days, which have to make us all feel better. The run up to Christmas last year, he had 35 days with no visible seizures, which was enormous progress and gave us real hope for the future and what could still be achieved
- We know that we have tried the most radical solution for seizure-control, we will never be wondering ‘what if?….’
But on the side of the cons:
- Joshua has never fully re-gained the mobility that he had when he went into hospital. He never had ‘normal’ mobility but he is now much more awkward in his walking and he has much less stamina than he did have prior to surgery, so we are more reliant on his wheelchair than we have ever been.
- They warned us at GOSH that he would lose his fine motor skills on his right hand, and we did not think that he had any previously. But now his right hand has become completely useless , hence our recent second attempt at botox to relieve some of his hands stiffness.
- Since his surgery, seizures have played havoc with Joshua’s sleep patterns. For the first time ever we have had regular nights when Joshua does not sleep at all either after a seizure or before, when one is threatening. That is an exhausting outcome to live with and to try to maintain some kind of normal life. It is the unpredictability that still creates most of our problems.
So I am really not sure if they are compromises, if I had had a crystal ball, that I would have been willing to take for the level of seizure control that we have achieved as he will still need to be on the poisonous medication for the rest of his life. But on this significant anniversary, I am just so grateful that we got our precious son back with us and that the day after his major surgery, he was sitting up in bed eating the chocolate birthday cake that the nurses kindly bought for him as he turned 13 in his hospital bed!