Acorn House was a good escape for all of us when it got too much
Things are tough in the country at the moment. Now more than ever ‘Homes from Home’ like Acorn House are so important. The Sick Children’s Trust enables families to stay together while they are going through such an awful time with a child who’s poorly in hospital. It cuts down on travelling from place to place and means that families aren’t separated at a time when they need to be together. Like mine.
One Tuesday evening in June 2018, my 15 year old son, Harry, suddenly collapsed at home. He had been poorly with a cold virus that turned into tonsillitis and despite being on antibiotics, he wasn’t getting better. My husband Peter and I took him to A&E at our local hospital in Peterborough, but we were told it was just post illness fatigue. However, Harry’s collapse was actually a seizure caused by two large abscesses in his brain and a life-threatening infection close to his brain stem which was discovered three days later when we took him back to A&E and he was rushed to Addenbrooke’s Hospital in Cambridge.
When we were told Harry was being transferred, we were petrified. Everything happened so fast that we were in complete shock. There was no room in the ambulance so we had to follow Harry in the car, which was heartbreaking. It was the worst trip of my life as we didn’t know what was happening or where we were going.
By the time we arrived, Harry was already in surgery. We were taken straight to the Paediatric Intensive Care Unit (PICU) to meet the team there, and they told us about Acorn House run by The Sick Children’s Trust. It was late on the Friday night by this point and we were exhausted and worried that the only way we could stay close by would be to sleep in our car. Acorn House however was just a few minutes’ walk from PICU, which took a lot of stress and worry from our minds, as we could be with Harry quickly if needed and also get some sleep.
The surgery was very risky as Harry’s brain had been completely pushed to the righthand side. We were told if he survived surgery, that he may not walk, talk or be able to feed himself again. He could be blind or deaf or paralysed on his right side. It was a lot of news to take in and we needed a place to stay to take everything in.
When Harry woke up he was very confused by his surroundings. Also, with his autism, his anxiety was heightened so it was really important that we were only a few minutes away at Acorn House as it meant we were there for him then and throughout his time in Addenbrooke’s. It was a really upsetting time for all of us and especially for Harry’s older brother Jack who was away at the time celebrating his A Levels. When he came home, he came straight to Acorn House to be with us and at his brother’s side. It was hard for him to see his brother so poorly, so Acorn House was a good escape for him when it got too much. For all of us, it was good to be able to step away from the ward for some quiet time.
Unfortunately, the infection in Harry’s brain went through his body and he stopped passing urine. He had an ultrasound and it was discovered that he only has one kidney! This had started to fail, so he needed to be transferred to somewhere that specialised in paediatric renal issues as well as neurological which was Nottingham. He had another operation to have a dialysis catheter inserted. But thankfully his kidney improved and he didn’t need dialysis. The first two nights he was in intensive care we were given a room inside the hospital on a busy corridor which was a completely different experience to Addenbrooke’s. Once Harry was transferred to a children’s renal ward there was nowhere for us to stay, so we had to take it in turns to come home every night which was tough.
After four days we were transferred back to Addenbrooke’s and stayed once again at Acorn House. This time Harry was on the children’s ward which meant one of us could sleep next to him while the other got a good night’s sleep at our ‘Home from Home’. It was a godsend.
As a result of the infection, Harry had a titanium plate fitted in the left side of his skull which replaced the infected bone. He has also been left with a pronounced right sided weakness in his leg and ankle, so he walks with a limp. His autism has sadly regressed and he now functions at age six in most aspects of his daily life.
Despite this, Harry is now doing well and is a happy, cheeky boy and doesn’t let anything stop him despite continuing to have seizures which can lead to a hospital admission. In January 2019 we had a four day stay in Addenbrookes as Harry had four full seizures in a row. The last one went on for 12 minutes, and his body started to shut down and he stopped breathing. Yet again we were given a haven at Acorn House. Abi, the House Manager greeted us with open arms and a comforting hug. It felt like staying with family, and really took a lot of the stress away.
During this time of unprecedented uncertainty, people will not be holding events for us to raise funds, it still costs us £30 a night to keep a family together. Whatever you can give will make a difference.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.