This morning we were off to PICU with neenars again at 5 am. He has been not quite himself for a few days. On Friday morning he had a temperature but that seemed to go away, but he had a very unsettled night on Friday night. J and I got very little sleep but couldn’t quite put our finger on what the matter was. He had quite unsettled nights both Saturday and Sunday and on Monday he was very sleepy. By Monday evening he was very distressed but I couldn’t figure out why. Nurofen and Paracetamol seemed to help but not for very long. Eventually we sedated him and he calmed down and fell asleep, but his breathing was very laboured. We have found, like last month, that there seems to be something intermittently in the way when suctioning him, and his breathing can be eased by applying pressure to his trachy. Worryingly, this is very much like the situation before the bronchoscopy last month, and it doesn’t seem to be a realistic prospect to be repeating this procedure on a monthly basis
He is now settled in PICU and being well looked after. We are hoping that his ENT surgeon will see him either today or tomorrow. We will keep you updated.