Elusennau Efan

       Life dependant on home oxygen isn’t an easy one! Efan needed portable oxygen cylinders to go outdoors and at home was connected to a Concentrator (a machine that converts air into oxygen). Being oxygen dependant meant that Efan was stuck to his tubing 24/7, it could get very frustrating for him at times but he always smiled and had a thumbs up.

      Eating and drinking didn’t come easy as breathing and co-ordianting would tire him out and cause him to cough and choke regularly. Efan was prescribed a special high calorie milk and when he had phases of being too poorly to feed he had a NasoGastric tube inserted through his nose to his stomach so we could top him up with precious calories. It was a very daunting and scary time for Bleddyn and Bethan– discovering their little boy had intense medical needs and having to learn new skills such as feeding with an NG tube, coping with a quota of oxygen for the week and recognising signs of low– oxygen saturations.

      Bleddyn and Bethan had to take Efan once monthly to RMCH for three days for his monthly dose of methyl—prednisolone IV steroids. The steroids weakened his immune system in the hope his body’s natural defence system would slow down trying to heal his lungs and therefore causing the scarring. Due to the high dose of steroids Efan’s immune system was extremely weak and greatly compromised his health, a cold was enough to have him hospitalised needing more oxygen and whooping cough and conditions like chicken pox were life threatening.

      Efan and his family spent most of their time indoors to try to avoid these germs. Even though the family were extremely careful with germs they lived life to the full and managed a holiday to DisneyLand Paris and several caravan holidays. Efan loved the simplest of outings– going for a ride in his trike or going in the pram to get Elan from school