Words cannot express the overwhelming love that we instantly felt when we held Oliver for the first time. Holding this beautiful warm little bundle we knew that our lives would never be the same again.
As the months went by it became all too clear that he was a very special little boy. His big blue eyes, curly blonde hair and infectious smile attracted attention wherever he went. As Oliver grew older he developed into a kind, loving, gentle little man. Full of energy he would run everywhere rather than walk, dance in front of the TV while singing and loved playing with other children.
Our gorgeous Oliver is indeed a very special little boy; he’s a courageous little fighter and still attracts attention (especially from the ladies) with his infectious smile and big blue eyes. And yes we have his laughter back in our life, we are so happy to have him in our lives.
Story from Maggie McCarthy (Oliver’s Nana)
Saturday 20th February 2016, l was just watching television before going out for the evening when the phone goes. On answering, I heard my daughter stating that Oliver had been rushed to hospital in a coma and to get here as fast as you can. I didn’t realise how bad the situation was at the time but my little car raced up to Ambrosden. My daughter was not making much sense but we gathered Suzy and the baby into the car and l made way to John Radcliffe Hospital. I dropped my daughter off and went to park the car. An ambulance lady showed me the way into casualty and quickly l was being lead to PICU.
As a nurse for 40 years l took one look at my grandson and thought he was going to die, he had that skin tone, l found out months later that he had in fact died in casualty but they managed to save him. l couldn’t tell anyone of my thoughts so l kept quiet. That night looking after the baby and sleeping in Oliver’s bed l cried myself to sleep. He looked improved the next day; his skin was back to normal which was wonderful. l contacted my employers telling them the situation stating l would not be at work the following week. The next three weeks myself, Sue and Tony looked after Isabelle visiting Oliver as both parents were staying in the hospital, sleeping in the Ronald MacDonald unit, it felt like Groundhog day, l forgot what day it was most of the time, just same routine l just went home to work then returned back to Oxford.
The next four months on a two weekly cycle l spent 8 days in Oxford then 6 in Southampton, work allowed me to do my shift close together to give me more time in Oxford. After PICU, Oliver was transferred to Robin’s ward, in the children hospital, then l would stay overnight with Oliver on the ward for 2/3 nights every time l visited to help my son-in -law. Some nights were good we listened to music, watched DVD or read stories. However l did have some terrible nights with Oliver distressed, vomiting up NG tubes or very restless, I missed Oliver’s birthday l had to work which was sad. l had my concerns about his sight and was not surprised when they said he was blind.
In July, he was transferred to the Children’s Trust in Surrey. l missed the caring nurses from the ward, slowly adjusting to a new system visiting Monday to Friday every other week visiting Oliver and looking after Isabelle at night to give my daughter time to be with Oliver overnight, felt like an unpaid taxi at times but you just do what’s needed. Oliver slowly improved during those four months, his vision returned slightly and he was very active with his movements. We all learnt a lot about peg feed, physio, tasters etc. Having more time at home allowed me to catch up on overdue house work.
In November, Oliver went home, to a new home, as there had been a house move in September. Once again the changes new people visiting, OT, Physio, Social workers, carer’s etc. l visit still every two weeks mainly Sunday to Thursday. Christmas was different but good we were all there which was the most important thing. I go swimming on Sunday’s with the children and the son-in-law as both children love the water. l am kept busy, doing lots of ironing etc. l drive the mobility vehicle so we can go out places on my visits. Oliver is slowly improving; the weather is slowly improving so this summer instead of being in a stuffy hospital ward we will be going out. This last year has been very emotional but you soon realise what is important, forgetting about things that aren’t and move on.
Just remembered the hours spent with fund raising but that’s another story hope l never have another year like it. Things can only get better.
I remember the day we got the call about Oliver being taken into hospital, it was just a normal day like any other, my Son rang in the evening to tell me that our Grandson had been taken into hospital via ambulance as he’d had a seizure. At this point, we were obviously worried, but we had no idea of the enormity of the situation that was before us. Both myself and my wife have full time jobs and a 10 year old son, so it was impossible to drop everything and take the 4 and a half hour journey to the hospital, something both of us wanted so desperately to do. We finally managed to organise things to take the trip to the hospital, Oliver was in intensive care and visitors were only permitted in two at a time. The moment we stepped into that room our whole world fell apart, nothing could prepare us seeing our beautiful Grandson so gravely ill, hooked up to all kinds of machines and wires that were keeping him alive, my wife burst into tears, I somehow managed to keep it together, I had to, for the sake of my Son and his wife, I had to be strong. We stayed for most of the day, just talking to our Grandson, stroking him and willing him awake. It was explained that he’d been put into an induced coma to stop him from seizing and ‘if’ he came out of his coma, he could well be brain damaged. We left the hospital that day in a state of shock, trying to comprehend what we had been told. We were remembering just the summer before when Oliver came to stay with us in Devon with his Mum and we took him to the beach for the first time, he absolutely loved it, running up and down on the beach, making sandcastles, paddling in the sea.
Olly spent 10 months in all in hospital, the latter part of that at The Children’s Trust in Tadworth, a specialist brain injury unit which specialises in round the clock care and in depth physiotherapy.
It transpired that Olly picked up a virus that attacked his brain, causing swelling that left him with considerable brain damage, he cannot walk or talk and is tube fed into his stomach, he is incontinent and is also partially sighted, he now needs round the clock care, this has been a devastating blow to his family, none of us know what the future holds for Olly, whether he will ever be able to do any of the things that other children do, walk, talk, feed themselves, play with his beautiful little sister, watch his favourite programmes, dance and sing to his favourite songs, it just doesn’t seem fair and just goes to show how quickly things can change in the blink of an eye. Oliver has improved somewhat since he was first taken into hospital, he understands what you are saying to him and still has the most amazing smile, when he smiles, he lights up the whole room, he is an amazing little boy with such determination, we know he wants to get better, we are praying he improves more and more each day, we love him so much and would do anything within our power to help him get better. It is so hard for us, being so far away, we don’t get to see either of our grandchildren as often as we’d like but through modern technology we are able to have video chats most days, we look forward to those video calls so much. We have seen the devastation that this illness has caused and would not wish this on any other family; it seems so cruel that this could happen to such a lively little lad. We remain, ever positive for his future.
Story from Suzanna Johnson (Oliver’s Mother)
As his mother I was concerned when he first got sick and took him to our GP to be told that it was just a virus. However when he wasn’t improving after a few more visits with the GP I was told that if his condition didn’t improve in 24 hours he would have to go to the hospital and go on an IV. Although he had stopped being sick and was drinking water he became very confused and by Saturday evening.
Olly was rushed into hospital because he had a big seizure at home. The paramedics took him straight to PICU where he was put into an induced coma to stable his body from the seizures. But due to the strong medication he had to take Olly was also hooked up onto a breathing machine as the medication stopped him from breathing by himself.
After numerous tests the Doctors informed my husband Michael and myself that our poor Olly had been struck down with Encephalitis a deadly virus that had attacked his brain and brain stems.
We as parents have been given the devastating news that our beautiful little boy may never be able to function as he once did.
However with a lot of perseverance and physiotherapy we may regain some of our little boy back.
Oliver has gone from PICU where we nearly lost him, then to PHDU, then to the Nero ward Children Hospital.
It’s going to take years and years and even after that he will still have so much missing from the life he was meant to have, this is why we need as much help as possible, the sooner we can help him more the better the recovery will be.
Oliver is in a lot of discomfort because he has holes in this brain and brain stem he has damage in the laminar cortical necrosis in his brain. He is finding it hard to do everything you do in a normal daily routine
Oliver has been struck with Encephalitis.
He has had 3 Lumber Punctures, 36 Cannula Insertion, EEG MRI and CT scans and on very strong medication for my seizures, body stiffness and virus infection.
Oliver has to have daily Physiotherapy and he is seen daily from Occupation health and the Nero Specialists.
Oliver may find it hard to talk again and he will have to be in a wheelchair as his legs are not working due to the brain damage.