Dylan25 Jul 2018, 4:20 p.m.
Dylan was admitted to the Bristol Paediatric Intensive Care Unit (PICU) May last year.
He was taken by the WATCH Team from the Royal Devon and Exeter Hospital. Dylan had had a seizure and a fever, he suddenly become very unwell and had to be transferred by ambulance to Bristol.
Dylan was on the PICU Ward on life support for five days. We were with him all of this time and very aware of the intensive treatment that he was getting. Dylan had numerous machines and lines that were attached to him. He had two nurses that were constantly checking him, the machines and administering different medications.
During this time all the doctors and nurses were always happy to answer any of our questions and continually kept us up to date with what was happening. When Dylan’s sister came to visit him, they spent time with her, telling her what they were doing and explaining all the different tubes, machines and medication. At all times Dylan was looked after, the nurses worked as a team day and night. They were all so professional, but also warm and caring. We know that all the staff on the PICU ward went above and beyond to help Dylan. We were always given information about what was happening and when it came to making a decision about stopping Dylan’s treatment, we were shown Dylan’s brain scans and given a lot of time to discuss this and ask as many questions as we needed.
Dylan died on the 17th of May 2017, the doctors and nurses stayed with us and suggested that we took hand prints, casts of Dylan’s hands and locks of his hair. When you are in a state of shock and the deepest sadness this was the last thing we would have done. We can’t thank them enough for doing this with us as it gave us something take with us. It helped to have this in the days that followed his death.
We had to come home to Exeter, our life line to the hospital was the bereavement team. Francis Edwards kept contact with us to let us know what would be happening next and the post mortem procedure. In the days that followed Francis was the only person who kept us up to date with what was happening and reassured us especially around the length of time the post mortem took.
Dylan’s post mortem report and conclusion took over nine months to be completed. For us this was a very long time. A meeting was arranged in Bristol for us to get the post mortem findings. This meeting was done with a lot of consideration to us and our daughter, Dr. Alvin Schadeneerg (Consultant Paediatric Intensivist), Francis and Catherine from the Paediatric Palliative Care Bereavement Team and the coroner. This took place in a quiet space near the hospital.
Since Dylan’s death I have had continual telephone contact from Francis, we have also attended a Memorial Day which was arranged by the bereavement team. This was an extremely difficult day, but helped us to know that we were not the only parents who had lost a child and that we could be together in our grief. We were also given a lovely stone with Dylan’s name on it. We know that there are other organisations that we can contact, but when you are having to deal with something so devastating, it is difficult to search for information and to ask for this. It has been extremely important to us to have this support.
As a family we cannot say thank you enough to all the staff on the PICU ward and the bereavement team. It is hard to express the experience we had as it was such a painful ending. We were fully aware of the dedication, long hours, kindness and all the care that we received while on PICU ward and after.