Elijah has complex medical needs and because of this catching a cold can be really dangerous for him. He was born with Congenital HSV (Herpes Simplex Virus) which caused multiple further conditions including epilepsy and adrenal insufficiency. This requires him to be on long term steroids and lowers his immune system. These various conditions mean he is classed as life limited. At home he is on oxygen to help with his breathing and for the last 18 months we have hardly spent any time in hospital. That was up until April when he was rushed to Great Ormond Street Hospital (GOSH).
Elijah was diagnosed with pneumonia and a collapsed lung, it seemed to come out of nowhere. He had been a bit quiet for a couple of days, but nothing particularly out of the ordinary that made me think that he was ill. On the day he was admitted to our local hospital though I noticed he was struggling with his breathing and I could tell he had mucus on his chest. I needed to do his suctions – to remove the mucus – so couldn’t drive him to the hospital myself and had to phone an ambulance.
“One night I even had a bath and could relax, gather and process my own thoughts.”
When we arrived at the hospital though it was clear this was more than the common cold. Over the space of 24 hours his condition deteriorated and he needed more medical help, which is why he was taken to GOSH.
I’d never spent a night away from Elijah but I knew that I would have to as he was admitted to the paediatric intensive care unit (PICU). On PICU parents aren’t allowed to sleep by their child’s bedside, so I had no choice but to leave him. From previous admissions I knew the hospital ran some emergency accommodation where I was given a bed to stay at the hospital. To be honest I really wasn’t thinking about where I’d stay. I hadn’t slept in two days and was exhausted with worry.
“The staff were always friendly, smiling and asking if there was anything they could do. It made this time in hospital just a little bit easier.”
Over the next week the PICU team worked to stabilise Elijah to give his body a rest to fight off the pneumonia. After a couple of nights in hospital I was told about Guilford Street House, which is run by The Sick Children’s Trust.
Guilford Street House is just a few minutes’ walk from the hospital and gave me a lot of comfort. I had my own space, my own room and bathroom which was amazing. One night I even had a bath and could relax, gather and process my own thoughts. Everything had happened so suddenly it was a lot to come to terms with and Guilford Street House gave me that time and space to do that. Guilford Street House had all the comforts of a ‘Home from Home’ it was really welcoming, and the staff were always friendly, smiling and asking if there was anything they could do. It made this time in hospital just a little bit easier.
After a week in GOSH we were transferred back to Basildon where we spent one more week in hospital before going home. That was in April and since then Elijah has been doing well and has not been back to hospital since. The warmer weather is really good for him too so we are hoping it will stay this way.
Natasha Oakley, Elijah’s mum
