When we went to bed on Thursday night we called PICU, as usual, to check up on Massimo’s progress only to be told that he had been so restless that they had taken him off CPAP early and he was happy and settled and all was well!
Friday was Massimo’s best day. He was off CPAP and even off his oxygen. He was happy and smiling and he even giggled – I think it was a first! The plan, at that stage, was to keep him in PICU and review him on Monday.
Unfortunately on Saturday afternoon Massimo’s breathing was very raspy, fast and shallow. He seemed to be suffering from withdrawal symptoms, he was shaking and he hadn’t slept in 35 hours. They put him back on CPAP to give him a little breathing support and to give him some extra oxygen. Massimo’s breathing started calming down and he seemed to settle but they had to give him some sedation to get him to finally sleep.
He didn’t actually sleep for very long and by the small hours of Sunday morning they ended up putting him on the ventilator again as he had two blue episodes. Today he was asleep when he had all his visitors but once everyone was gone he opened his eyes and gave his nurse, his mum and his dad a few smiles before falling asleep again.