Reuben and Mama

Thank you everyone. You really do help. Quick snap before I left him yesterday to be with Callum.

I'm home again from the hospital. Callum is about to fall asleep so I'll be joining him for a much needed nap in a mo but first need to clear my head of my thoughts.

Reuben is critically stable. We've had 24hr hours together, during which time you've been heavily sedated on Fentynl, Versed, Adivan and a huge cocktail of other meds to relax, anti-itch and virus attack. Whenever Reuben stirs, he immediately attempts to self extubate, that is, pull out his breathing tube so we have no choice but to keep him sedated.

Therein lies the challenge: we have no idea whether he can breathe by himself right now because we are unable to drop his ventilator settings enough to allow him to take the breathes himself, since if we were to do that, the tube would be pulled out again by him.

The plan is to try to extubate (remove) him from the ventilator on Thursday in the operating room/theatre. The fact that his throat cultures are showing signs of pseudomonas, candida and other infections suggest he was pushed over the edge at a bad time, not that an upper airway obstruction has caused him to fail to be without his trach so soon after decannulation (removal of the trach). There is hope.

The big juggling act is with Callum and my dear friend and near neighbour, Mary, whom ironically I met at Reuben's early intervention infant programme at UCLA, has been a Godsend, looking after Callum daily for the few hours we switch between being with Callum and Reuben each day.

Sometimes you may forget what it means to be intensive care: we've been here for 6 months previously after birth then at Children's now at UCLA and the ritual becomes familiar as you battle a rollercoaster of emotions, scenarios and pain.

A huge crowd had gathered. There were balloons flying celebrating the boy's 4th birthday in the room beside us. I remarked how soon we are to Reuben turning 3 this weekend and I felt an instant kinship for them. And then as soon as the celebrations had subsided, I saw the crowd of family and close friends dissipate, the nurse was called from Reuben's bedside "do you want to say goodbye" and the room beside us was cleared. I asked the nurse if the family had gone home but she was unable to answer. I was filled with the overwhelming rush of pain for what the family has just endured and the air was unable to hide what had happened.

I'm taken back and again my heart bleeds for this unknown family and for our dear angel friends 30 months and 18 months on now.

A new family with a tiny baby has now moved into the vacant room and the daddy sits giving the baby her bottle late into the night, her sweet little cries and their story to me as yet untold.