Dylan’s story

Dylan was born 6 weeks early, no reason why I guess it’s just one of them things. He was fine when born, breathing on his own with good o2 sats. Dylan stayed in NICU For 10 days and left with just a bit of jaundice however, when he was 3 months old we noticed his breathing to be a lot harder and struggling so we took him to hospital. They said he had what appeared to be the start of bronchiolitis and to expected him to be worse by day 5 but ultimately he would recover. Dylan never got any worse but at the same time, never got any better. After numerous trips to the doctors to be told different things each time, he ended up in hospital at 5 months old with Bronchiolitis. Dylan did get worse to the point where he needed tube feeding; he was so exhausted.

After about a week Dylan went home without oxygen. The doctors did said his sats were low but they assumed that was just the way he was. To be on the safe side, the doctors wanted to have him checked over so they booked him in for a CT scan when he was 10 month old. At the appointment his sats were very low so he was immediately admitted into hospital. The CT scan was performed later that week and that showed dark patches on his lungs; the doctors were unsure what it was. Dylan then got discharged even though he was put under further investigation and then about two weeks later he was readmitted because his breathing has worsened. After a week of numerous blood tests and constant o2 he got discharged on 1 litre o2 24/7 with a diagnosis of NEHI. Dylan is now 20 months old and is still on 02 24/7 with trials to wean him off through the day. This has been a very hard time for myself (Mum) and partner but Dylan is such a happy boy and thankfully he doesn’t know any different so he just gets on with his tubes.