Self portrait Reuben & Mama

Thank you everyone. You really do help.

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. (Slept briefly, had a nightmare about spiders again - Kati/pranaphoto told me what spiders represent previously - which woke us both up, and that was it for Callum so we went to the park in the early evening, had a big bubble bath together and we were both tucked up together by 9pm).

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. You have to literally lay on his arms and keep his head straight to stop him. He wants this fella out and quick.

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 doing so would require him to be alert enough to breathe freely.

The plan is to try to extubate (remove) him from the ventilator on Thursday in the OR/theatre, a painful wait as that's the only date the Ear Nose and Throat Attending Dr is present. 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 are balloons flying celebrating the boy's 4th birthday in the room beside us. I remark 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 have subsided, I see the crowd of family and close friends dissipate, the nurse is called from Reuben's bedside "do you want to say goodbye" and the room beside us is cleared. I ask the nurse if the family has gone home but she is unable to answer. I am filled with the overwhelming rush of pain for what the family has just endured and the air is unable to hide what has 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.