Good nodding

Well .......what a few days we've had. The shunt operation which was scheduled for Monday didn't go ahead as Rafi had a high temperature during the night. The neurosurgeons decided to do an alternative operation an 'endoscopic 3rd ventriculostomy' instead which if it worked would have meant he wouldn't need the shunt. Unfortunately that operation couldn't be done either as they couldn't see what they were doing due to 'debris' in the fluid. So they washed out what they could.
On Monday night Rafi was quite poorly and had stopped responding. The crash team was called so that he could get down for a CT scan ASAP. I was at the hospital with Ian and got a call at 1.30am . No new bleeds thank goodness, just fluid build up, so they lowered his drain which seemed to work.
Rafi was totally zonked yesterday and hardly woke.

Rafi had a good night last night and worked hard in his physio session this morning.Debbie the physio was encouraging him to hold his head up himself which he was really trying to do. GO RAFI!

Saw the ENT nurse today and she confirmed what we thought, that Rafi has started to swallow (YIPEEEEEE) She deflated the cuff of his tracheostomy and put some food colouring in his mouth to ensure that no saliva is going down his windpipe. This is the first step towards having his tracheostomy removed. Several hours later and no blue dye has been suctioned out. Fingers crossed.