Elusennau Efan

          Even though Doctors couldn’t prognose Efan’s future, we all had faith that his lungs would strengthen as he got older, this is generally the pattern with other children with the same conditions. But, this wasn’t to be the case, in August 2012 Efan began breathing more rapidly than usual and was needing more oxygen than we could provide at home.

        At the end of August he was taken to Manchester, his breathing deteriorated quickly and within days was on a ventilator in PICU. Doctors from around the world were involved in suggesting treatments/ reasons for his deterioration. Lots of drugs and treatments were tried to no avail. An MRI scan showed his lungs had got worse. One day Efan would be quite well and another he would be very poorly, frustrated and his body couldn't cope with weaning off the high doses of sedation he had been on for weeks.

      Efan stabilised and was slowly weaned off his sedation, this enabled surgeons to give him a tracheostomy and Efan was put on a portable ventilator system. He managed to re-learn a few words like Mam, Dad Nenan, Bob and drink and on good days, he was able to stand. He enjoyed cuddles from Mam and Dad and loved it when Elan arrived on a Friday to play with him. Some family and friends came to visit too and this cheered him up greatly as living for months in a cubicle was very frustrating and boring.

       At this point there were long discussion between RMCH and Great Ormond Street regarding Lung Transplant. It was however decided due to his young age, costing issues, low survival rates and the seriousness of such major surgery that transplant wasn’t an option.

      Mid-December Efan took a turn for the worst, he was needing 15 litres of oxygen and no more was to be done for him. Bleddyn, Bethan and Elan met up with all the Consultants and Palliative Care staff involved to discuss the next steps. Efan went to bed on Friday night 14.12.12 holding Dad , Elan and Mam’s hand tightly and he died quietly and peacefully in his sleep,

Dr Samuel from PICU said:-

 

”Efan– you graced our lives!”

      

      As most children in PICU are unconscious , the nurses and Doctors looked forward to caring after Efan as he was awake and was a character! In his PICU cubicle he had play mats on the floor and could drink from his beaker and eat what he could manage, he also had a bath each night before bed. He would do a thumbs up at everyone and loved to wear silly hats and glasses and have fun.        

       During his last night in PICU the nurses and Doctors came in and out of his cubicle throughout the night to bid their last farewells and give him a kiss and cuddle. The following day with lots of help and support from the hospital staff, Aunty Sian, Uncle Dyfed and Pritchard and Griffiths (Undertakers from Tremadog) we were able to bring Efan home to 2 Bryn Glas for the last time.