Josh was born 14 weeks early meaning we spent the first 4 months of his life in NICU. We were home for 3 days before we were rushed back in as Josh had stopped breathing. For a long time this was thought to be related to severe reflux, and in March 2015 he had a nissen fundoplication to attempt to stop these life threatening apneas.
Once this was done, it was realised that he now stopped breathing when he was asleep. We were transferred to Queens Medical Centre in Nottingham under the care of Dr David Thomas who specialises in sleep disorders.
We spent the first 10 months of Joshua’s life in hospital, and most of this in an intensive care unit. As we also have a 5 year old, this meant splitting the family in two, I stayed with Josh, and Phil stayed with Erin. We had no family life whatsoever. We couldn’t plan from one week to the next let alone beyond thatJoshua’s mum
Support from WellChild
We have now reached a period of relative stability, and we have had no emergency admissions to hospital in nearly 2 years. We are supported to manage Joshua at home by Rachel our long Term Ventilation Nurse funded by WellChild. We have had to increase Joshua’s ventilation settings a number of times – climbing from CPAP to BIPAP, but that has all taken place within the home environment, supported by our WellChild Nurse.
Josh now attends nursery where they are all fully trained in caring for him. We have recently been awarded an EHC plan in order for Joshua to attempt to access mainstream schooling with 1:1 support. Joshua is cognitively strong and we wanted to encourage his growth and development as much as we can.
Joshua is a typical boy, and loves tractors, dinosaurs and his big sister. Whilst he faces significant challenges in the coming years, (Joshua has a severe developmental delay, a severe speech and language delay, and issues with regards to an oral aversion) – we can at last now see a future.
WellChild Nurse Rachel immediately filled me with confidence that she “got it”. We both truly have the same aim - which is to keep Josh out of hospital, and well. She has honestly given us back our life. We now plan holidays. Josh goes to a nursery where he mixes with his peers. Erin has her family back together and Philip and I have an intact marriage.Joshua's mum