Wrapped around your finger

It's quite clear who's the boss around here. A young and inspiring boy by the name of Reuben. He'll go to the operating theatre to fix the congestive heart failure when he's good and ready. For now, a new date's been rescheduled for Monday thanks to, you've got it, a new pseudomonas, but less aggressive, lung infection from the good old ventilator. Horrific setback on Monday morning when we were called at 4am to say Reuben had a cardiac arrest but was successfully resuscitated by his nurse. I hope these last few days are as bad as it gets. Visits this week from Lisa (Jason's sister) and Paul, Auntie Angie, Cousins Lisa, Barrie and Karen, Martin & Julia Stitt, and our dear fellow NICU friend Cassandra who, it has to be said, was subjected to a bit of a breakdown by me after a week that's seen Reuben effectively jogging for 3 days whilst off the ventilator, re-intubation on the ventilator, collapsed lung, cardiac arrest, lung infection, scheduled heart surgery, rescheduled heart surgery. And what surprises everyone when they meet him, once they wade through the wires and monitors and tubes, there's a bright and contented boy loving his toys, the softness of his blankie, having his hair brushed, sucking a dummy (a new thing), kicking around, pulling little red reuster faces, making them laugh and smile and fall in love with him. They don't see a boy who looks critically ill.

And so the rollercoaster continues. For today, Lisa, Paul and I will go up to the Griffith Observatory which is right by the hospital in Hollywood and bring back a new perspective of the World for Reuben to enjoy.