On Monday 13 February my 13 year old son Jacob, who has complex needs including spasticity cerebral palsy, Lennox-Gastaut syndrome, epilepsy and severe learning difficulties, was booked into our local hospital in Wakefield for hamstring release surgery and the removal of some of his teeth. Both procedures went well and we were expected to come home the following day.
However, while in the recovery room Jacob suffered a respiratory arrest and had an allergic reaction, and the emergency team were called. He was shaking from head to toe and making noises I’d never heard before, it was as if he was suffocating and couldn’t breathe. I was absolutely terrified. I’d never seen Jacob react like that to anything. He has epilepsy, so I’m used to seeing him having fits, but this was different. I didn’t know what was going on. I was supposed to be taking Jacob home the following day, but that now seemed a million miles away.
Jacob was placed on oxygen and moved to the high dependency unit (HDU) at the hospital. After a while he began to settle so I returned home to care for my other two children, Hollie and Abbie, while Jacob’s Dad, Mark, arrived at the hospital and stayed with Jacob. But that night, Mark rang me to tell me I had to get to the hospital urgently. Jacob had taken a turn for the worst and had been placed on a ventilator as he could no longer breathe on his own.
As soon as I arrived at the hospital, I was told Jacob needed lifesaving treatment – and he would have to be taken to Sheffield Children’s Hospital, over an hour away from home. I didn’t know what to expect or what would happen. I didn’t even really know where we were going. All I could think about was staying close to my son and helping him in any way I could.
During the journey in the ambulance I was doing my best to take note of where we were going, trying to message my family to let them know what was happening, and trying to speak to Jacob’s sisters who were both really worried about their brother. The journey is still very much a blur. I’ve never been so scared in my entire life – seeing Jacob lying there with all this equipment all over him and not being able to do anything to help.
When we arrived at the hospital and whilst Jacob was being transferred to the paediatric intensive care unit (PICU) I was sat in the parents room trying to stay calm when a very smiley lady wearing a bright pink t–shirt walked in. She quickly introduced herself as Ann, the House Manager at Magnolia House, which is run by a charity called The Sick Children’s Trust. I had no idea who or what that meant.
“Ann turned out to be my fairy godmother and counsellor all rolled into one! She told me there was a bedroom ready for myself or Mark and that Jacob’s sisters could take turns to stay over too. Ann told me not to worry about where I would sleep, eat, or about travelling backwards and forwards from my home to the hospital, just to concentrate on Jacob. That will always stay with me. I was then taken to Magnolia House, a few minutes’ walk away from Jacob’s hospital bedside.”
Wow! I couldn’t have imagined a lovelier, calmer or more comfortable ‘Home from Home.’ As Ann showed me around the house, and then to my room, I could feel a sense of relief wash over me. When she had come to take me to Magnolia House I thought I’d be leaving the hospital and walking away from Jacob. But I wasn’t. I was going to be able to stay so close to my son which gave me great peace of mind. And I think being so close to Jacob helped him too.
Talking to other families staying in the house was also incredibly helpful. I couldn’t speak to anyone for the first few days, but when I started to talk to others, I began to feel a sense of relief. Having other parents who had already been at Magnolia House for weeks or months and experienced every emotion I was going through was a great comfort. I wasn’t alone.
“I could be having a really bad day, and there were countless of them, and a smile from another parent would pick me up and make me carry on. Their good news became a bright moment in my day when I needed a bit of hope. And being told helpful information you don’t even really think about, from where to park, where to buy food or where to go and gather your thoughts was wonderful.”
I cannot thank all the staff enough – however busy they were, they always took time out to say hello and see how I was. They never made me feel rushed, they always listened and asked how Jacob was.
Magnolia House was better than some hotels I have stayed in. Just the fact I had a dining room, kitchen and space to have time out proved to be such a valuable thing. The nurses knew I had a place to go to recharge my batteries – be it for an afternoon nap or ten minutes’ breathing space.
That was made easier thanks to a telephone with direct access to Jacob’s nurse in PICU. Being able to telephone Jacob’s nurse during the night and first thing in the morning was unbelievable and for the nurses to ring to say he needs you to come over was amazing – more than I could’ve ever hoped for. They knew they could contact me I would be back within five minutes.
“Being a mum to three amazing children who love each other so much is a gift. And separating them while Jacob was ill was incredibly difficult. However, having a spare bed in my room at Magnolia House meant my daughters could take it in turns to stay with me, which for such a close family, helped hugely. I am a great believer in telling my children the truth, however your imagination can run away with you as a child, so for my daughters to be able to stay with me and stay so close to their brother helped them all. As Jacob’s main carer, my girls keep me going and play such an important part in Jacob’s life, especially with his special needs and disability, being little carers themselves.”
It was decided to stop some of Jacob’s epilepsy medication and in the days that followed, he proved to be such a fighter. He eventually came off the ventilator and was moved back to the HDU, where he stayed for a week before being transferred back to our local hospital.
Leaving Magnolia House was such a mix of emotions; sad in a strange way to say goodbye to my safe haven and leave the comfort of the house, but such a relief that Jacob had turned a corner.
After quite a few weeks at home, my amazing son returned to full time education. And he returned as a different boy. Vocal for one, making sounds and always being so alert. He really enjoyed catching up with his friends and the amazing staff at his special school.
I cannot imagine being in a situation like that again and not having somewhere like Magnolia House. I’m now a firm believer that every family should be able to stay in a ‘Home from Home’ when they need to. I wear my Sick Children’s Trust t-shirt with pride.
Jackie Blanchfield, Jacob’s Mum
