ijustcantstayquiet
Active member
She needs the ENT and Respiratory team at SCH. He will likely need an airway scope under anaesthesia to see why his airways are failing and he can’t maintain his oxygen saturation (blue spells). She isn’t taking this as seriously as she should. It’s incredibly common with genetic syndromes to have low muscle tone and this can include lungs, ear nose throat issues etc. This would usually be explained at genetic counselling sessions to be prepared for this. Nursing in Paeds I can tell you there are many red flags but every parent has to have have their own journey. Hopefully someone in SCH will be able to really explain in details what the future will likely look like. God or not, the body has its own systems that need vigilance when you are a special baby.