The journey

And just before we leave for UCLA hospital, right up the street, we steal some moments in the play area of Reuben's school (one more week of school to go, oh no) where as parents we only get to sit if I'm playing nursie that day or during family days. Reuben is very good about having to leave school early, as if he knows he is headed for some big adventure.

"Today is a big day" says Mama to Reuben.

The endless hours of waiting to be admitted to the operating room can glide by quite easily when you have an entertaining character like Reuben on your hands. So say the Drs and nurses too, being charmed by the little boy in the pink pajamas with huge Elton glasses. I open a beloved book, "A squash and a squeeze" from our favourite series by Julia Donaldson. And lo and behold, as I approach the end of each sentence, Reuben chirps in with the last word, signing and speaking.

"Wise old man won't you help me PLEASE"
"My house is a squash and a SQUEEZE".
"Take in your cow, said the wise old MAN".
"Take in my cow, what a curious PLAN".

What a beautifully miraculous moment to hear him do this for the first time as I know how gorgeously typical a step it is in language development.

Reuben is wheeled away to the OR, laughing all along the way, awaiting the sleep that will overcome his body under general anaesthesia, waiting for the Dr to decide if his trach can, indeed, come out again.

He walks towards me, the Ear, Nose and Throat Dr and as with any such encounters, the Drs are generally poxer faced. The news is that Reuben's throat looks very much how it did when the trach went back in, but, he says, given the clinical evidence of his lack of throwing up whilst on an additional antacid, Reglin (other than due to this awful stomach bug the boys have both have) and the fact that for nearly 2 weeks he was running around happily trach free, they would give the decannulation another shot! I'm pretty astounded by this and seeing that in my eyes, Dr K remarks:

"That's what my plan was all along. But I wasn't going to tell you that before the OR".

"Oh I don't blame you Dr", I say, knowing I have as many "But when, but why, but hows" dancing round in my head as any mother in the same position, and, shaking his hand, I race up to see Reuben in recovery".

I know he's back with me when he's able to sign again and we can resume "A squash and a squeeze". The trach needs to be pulled out when he's awake, and now he's come to, there is no sign of any ENT Dr to be with me by hospital protocol when I take the trach out, and, as emergencies roll in, it became too late to attempt it that night. The new Dr warns "I've seen too many bad things happen when we take the trach out without the right support late in the day" for me to push the point any further. I spend the night in my dress from school that morning by his side, listening to a cacophony of alarms going off for silly dips in his heart or breath holding which I would ordinarily ignore being within Reuben's baseline, but that the hospital has now been forced to have at a screeching tone after an incident at UCLA. So each hour of the clock rolls by and at 6am, we are all there to witness the moment.

As I pull the trach out, Reuben signs "Thank you" to me but is crying a little. Perhaps in relief, feeling all the rollercoaster of emotions I've been burdened by. When he's sad, I'm depressed, when happy, I'm ecstatic.

Reuben will stay in another day for cautious observation with Jason and then I hope we can all start again.

* * * home now Friday morning... Callum's tummy a little better. I'm exhausted, he won't sleep. Pneumatic drill digging foundations. Found some earplugs. Hope I can make it through to bedtime.