Off to Treetops

Busy day for Rafi. Tilt table this morning, then the dreaded blue dye test which he immediately 'failed'. He tried again later with Kiera but still a little dye came out of his tracheostomy tube. The ENT nurse consulted with the registrar and they have decided to leave his tracheostomy cuff deflated and give him a chance to get used to the sensation of having air going up his nose and see how he copes. His 'sats' are good so he isn't aspirating. I think if a little saliva goes down the wrong way he immediately coughs it out. He's had a horrible day coughing and has also been sick a couple of times ( caused by the coughing I think )
William and Olivia visited today and we all escaped from the ward ( with a nurse and support worker and all the gubbins necessary for a short trip out of the ward) and went up to Treetops to show Rafi where we have been staying overnight. We have been told today we will probably have to give up the room tomorrow as parents of children in HDU have priority,so we will be sleeping on a plastic reclining chair next to his bed ........ no sleep for us.