Today is the five year anniversary of one of the toughest days of my life : on 4 March 2014, Joshua underwent brain surgery – a hemispherectomy – at Great Ormond Street and at this time 5 years ago, our small family was sitting in the ward waiting to be taken down to the operating theatre. We had stayed the night before at GOSH ‘patient hotel’ across the street and we had taken him out to Pizza Express for his favourite lasagne as his last meal before nil by mouth.
Joshua was the first of the cases to be taken downstairs and we signed consent for his surgery and anesthesia. I always find the speed at which intravenous anesthetic takes to take effect. It is almost instant – you are holding the hand of a lively but scared child and then in a blink, you lose him, he goes floppy and inert. He was taken into the operating theatre and we were told to go away and amuse ourselves for the morning, but were advised not to sit in the waiting room for the whole time. So my husband and I went to a cafe for a coffee, neither of us felt like eating. Then we decided to hire bicycles and to cycle to Covent Garden as a distraction. The busy city centre traffic was certainly a distraction! Once we got there, we bought Joshua a monkey cushion as a present and we had a pancake as it was Shrove Tuesday that year.
Then we could stay away no longer, continually checking our phones for news, so we cycled back to the hospital and chose to wait on site. Then the news came that he was out of surgery, all had gone well and he was in recovery and we could go and see him. He was understandably still very drowsy and was bandaged up, connected to tubes drains and monitors, but our son had survived the surgery. He was alive and next we wanted to hear his voice or see a sign that he was still the same boy, despite having had massive trauma to his already-injured brain, but we had to be more patient for that sign, but of course it came. The relief and the love that we felt for Joshua that day was immense. We had made a choice for him, to try to improve his life in the longer term, and that was a huge responsibility. But at this stage, we were so happy that Joshua was going to see his 13th birthday, the day after, and that the long agonising wait was finally over.