EVD

EVD stands for external ventricular drain. Its purpose is to drain cerebrospinal fluid from the brain to prevent a build up of pressure.
Rafi has had one of these since his first haemorrhage back in November. I have become rather obsessed with it, the colour of the fluid, the amount it drains, the level of the drain. Wherever Rafi goes his drain has to go with him, I worry that it will get pulled and dislodge itself ( which it has) I worry that it might get blocked (which it has) I worry it will drain too little ( which it has). When any of these things happens Rafi becomes very ill due to a build up of pressure in his brain.
The fluid is now running a very pale pink colour which is a good sign. Rafi is due to have his shunt operation on Monday (all being well). If this operation goes ahead I won't have to obsess about this drain any more ( but I will be able to obsess about whether the shunt is blocked or infected.... Help!)
Rafi has had a good few days since Wednesday.
He has had loads of visitors, Grandma and Grandad, Peter and Sarah, Sue and Sasha , Niall and Brad,Auntie Carol and Uncle Ellie.
Kiera and I got to hold Rafi's head during the physio session yesterday to feel for ourselves how good Rafi is at answering questions appropriately with a nod of the head, a wonderful moment.