This is the story of Dempsey whose journey involves a time critical transfer from his local hospital in Devon to have emergency neurosurgery in Bristol. Dempsey’s Mum has shared their family’s experience.
Our experience of paediatric care has always been second to none, faultless in fact. Our experience of Dempsey being critical was every parent’s worst nightmare. When entering Torbay Paediatrics on 28th July 2023, with no idea what was happening to our son, having never experienced a seizure or even read about them, we were dumbfounded as to why Dempsey lost consciousness so quickly after all he just had an ear infection.
Reflecting, was it quick? Probably not as quick as we initially thought. It started to kick in around midday and had fully taken over by 1:15pm. But it probably was slowly progressing from about 10am. As naive as it sounds, we both thought when I rushed Dempsey in that you’d give him some antibiotics and after a few days we’d be back home. How very wrong we were. Dempsey was immediately taken to resus and then a scan. We were kept updated with the vital information, comforted and cared for by every single member of the team who came in contact with us. We knew and felt Dempsey was in the safest hands. While going through what could only be described as hell, there was not one moment that we felt we weren’t able to ask questions about what was happening to Dempsey. Even at the scariest of moments, doctors and nurses kept checking in with the information we needed to know. When you have no medical background, other than the highly unreliable google, it was so important to us, to know what was actually happening, as seeing our son deteriorate before our eyes, sent us both in to the darkest hole we’ve ever experienced. Every single piece of information was crucial to us. We commend you for that.
The journey to Bristol Royal Hospital for Children (BRHC) was so tough. Being blue lighted with your child in such a critical condition was a journey full of fear and desperation to get him safely to Bristol and to have his operation. The paramedics still managed to make me smile when my world was crumbling. On arrival at BRHC, while Dempsey was being transferred from the ambulance bed, the lovely Accident and Emergency Consultant explained the next steps. I’ll never forget this, he said “we are going to take Dempsey in now to have an MRI, then we are going to take him to theatre, remove the pus and get him back to you.” Those words I clung on to for the next 3 hours. My legs gave way, my hands were shaking, the realisation hit that our baby boy was being taken away from us, intubated, to have brain surgery. Every emotion flooded our heads and our hearts. The incredible surgeons came into the parents room where we were both waiting and explained everything in full about what was about to happen. The three possible options of surgery, the recovery and of course the possible complications. The Neurosurgeon said the operation would take around 3 hours, Dempsey will have a pressure line in and a 1cm incision behind his ear. We’ll then be able to see where we are at from this first operation and how successful it was. He was expecting Dempsey to be intubated for a couple of days while he recovered. Everything was signed off with us, whatever it took to get Dempsey back safe, in our arms. We lay there crying for what felt like years.
I looked at my watch and it was 11:11pm, an hour earlier than expected, the Neurosurgeon walked in the room. My heart sank, he wasn’t supposed to be back yet, then the words, everything went well, he’s back in Paediatric Intensive Care Unit (PICU) now awake, talking and asking for you. That is a moment and a feeling I will never ever ever forget. 10hrs after being non responsive he was back!!! BRHC had brought our beautiful little boy back to us. Spending time in PICU was such a blur. Every single consultant/nurse/doctor was truly incredible. Dempsey had someone by his side for the next three days, we felt safe, protected and reassured. All be it, very tired! They were so happy with his recovery already, it was such an incredible feeling to hear them say, he is doing so well the day after he had neurosurgery! We spent time on Bluebell, and Daisy and both wards looked after us impeccably. Nothing was ever too much, they made us laugh, held our hands while we cried, gave Dempsey the best care we could have wished for, for his recovery, which all helped us to get back home, with his brother and sisters, back where he should be.
The OPAT (Outpatient Parenteral Antimicrobial Therapy) team were and still are amazing, they are on hand whenever I need them. They were so patient with me while I learnt how to administer IV (intravenous) antibiotics and so supportive. Our district nurse was an absolute dream. Having the most smiliest caring and loving nurse welcome us when we got home, after being through such trauma was such a wonderful feeling, she was on hand whenever we needed her. She was calm and patient with Demps while he had his dressing changes and always listened to me waffle on. We miss her weekly visits!
For us as a family, the main thing we wanted was to feel informed and to know Dempsey was going to be okay. Whilst those words were not able to be said, as Dempsey was so critical, he was so so poorly, we had no idea just how severe it was. Looking back, that’s probably a good thing. You protected our heads and our hearts with only telling us the information that mattered to us. That very morning Dempsey was eating cereal and laughing with his siblings. All we wanted was for everyone, anyone to help us save Dempsey and to get him better, to see something from behind his eyes again, to get something back as that morning our little Dempsey just wasn’t there. That is exactly what everyone did. Each member of the team both in Torbay and Bristol, rushed, rallied and raced against time to get Dempsey up to Bristol to begin his neuro journey. Without Torbay and Bristol Dempsey wouldn’t be here. Whilst that will always be a tough pill to swallow, we have learnt so much as a family. We will always cherish you.
