A five old boy who has spent almost his entire life in hospital has headed home for his first ever Christmas.
Oscar Edgar has been a patient of the Royal Hospital for Children since his birth in April 2015 and has an undiagnosed neurological/ muscular / respiratory condition which means he was ventilated until he was four and a half. He is unable to eat or speak, but understands everything around going on him and has recently learned to walk.
While delighted to have Oscar home for Christmas after sometimes thinking the day would never come, his mum Megan says they were sad to leave the hospital that’s been home for so long.
She said: “Everyone in that hospital loves Oscar and he loves all of them. From the doctors and nurses to the cleaners and catering staff – even the staff in the shops know Oscar because we’ve been there so long. It took us two hours to go round everyone and say goodbye.
“We honestly thought the day would never come. Oscar’s had the last rites on more than one occasion and the staff were there to support me every time. So now, to get him home a week before Christmas is like a dream come true.
“The thing I’m most excited about is being at home with him and my other son Theo (21 months) on Christmas Eve and waking up here and opening our presents together. That will be so special.”
Oscar’s journey to here has been a complex one and has involved clinical input from a number of different specialities.
Dr Phil Davies, Consultant in Paediatric Respiratory Medicine, Royal Hospital for Children, NHSGGC, said:
“It has been a long and complex journey for Oscar and his family. Oscar has had a significant muscle weakness from just a few months of age and has needed a tracheostomy and a ventilator for most of his life to support his breathing. It has not only been a delight to see him make medical progress and be able to breathe by himself but also to see his cheeky personality develop. I wish Oscar and his family all the very best as they move into the next exciting phase of their lives.”
Megan (23) said: “I can’t put into words my gratitude to the Royal Hospital for Children and all the amazing staff. The nurses have been like family to us all – they didn’t just look after Oscar, they looked after me too. Oscar adores the nurses. Theo’s favourites are the cleaners and he tries to steal their mops to have a play!
“I was 17 when I had Oscar and I didn’t even know what a disabled person was. The hospital was my home too for eight months in 2017. I have grown with Oscar and I’m now able to operate all sorts of medical machinery. They made all that possible.
“On the difficult days they were there to offer not just care, but cuddles and always made sure I had eaten and drank enough. They always had time to speak to me about how I was feeling.
“They have also made so many things possible. We were told we might never get Oscar home, but with their help we have had trips to the cinema, Disney on Ice and even Edinburgh and the nurses were with us every step.
Megan is also incredibly grateful for the input and care from the medical team at the RHC.
She said: The doctors have been incredible. They always took time to explain to me what was going on. I am amazed, they seem to know he was becoming unwell even before he became unwell. They know him so well it was almost an instinct.”
Megan realises there is a long road ahead for her family, but right now is just looking forward to settling Oscar and home with her and his wee brother.
“On the few nights we’ve had him home for visits, Theo’s been climbing out of his cot to snuggle in with Oscar in his bed. He really misses him when he goes back into hospital so it will be lovely to be here and be settled together.”
Senior Charge Nurse Eleanor Selkirk said: “Whilst Oscar has had lots of care needs, which comes with a lot of equipment, Megan was never afraid to take him out and about ensuring he experienced the world around him.
“Oscar’s had lots of ‘firsts’ on his journey with us - First sign language (often teaching us all along the way), his first steps, his first expression, his first day at nursery and then school, his first ‘rave’ and his first sibling – when he became a big brother to Theo.
“Ward 3a became Oscar’s home and Megan and Theo’s second home. He knows everyone and is very much a part of the family, as are Megan and Theo. Whilst we were delighted to see him going home to be with mum and brother, we are all going to miss him very much and have, for the last few weeks, been saying our private goodbyes as we worked our last shifts with him.”