Catherine Lacey: BoyStory

By catherinelacey

Reuben in the small hours

Update: I had to share these from Lil Toes photography. I hope some day they will be my work. This is from last Friday, hard to believe hey...
www.liltoesphotography.com
Click on the Client section a
password: Dodd2010 (all one word.. no spaces)

Briefly: a harrowing night with Reuben. Seemingly fine during the day whilst on O2 and breathing medications but by nightfall he was in a bad way retracting about an inch. I must have been asleep for a bit because I woke with a cuffuffle and the decision was made with my consent to intubate him, that is a breathing tube down his throat and put on a ventilator and if that failed because the throat had become blocked, the trach would go back in.

The rollercoaster of heartbreak, silly thoughts like his longed for UCLA graduation this Thursday, birthday party, trip to the UK all planned within the next week having gone to the wind.

I took this picture with my basic phone simply because I thought of the trach going back in and wanted to be able to go back and see his sweet nape of his neck and don't feel like working out how to extract it from the phone.

We have been spared the trach for now and he's doing well on the ventilator at this moment. When he came round from general anaesthesia (the decision had been made to call the throat Dr in and do the procedure in the operating room because of the risk of too many complications and scenarios), he immediately went to pull at the breathing tube down his throat, naturally and I grabbed it with a split second to spare.

At times like that I feel I'm at the Wailing Wall and so very pitiful, my lowest points and rawest emotions.

Thanks everyone. Must sleep now I've picked up Callum. Another almost sleepless night in hospital.

Just stuck my shot of Callum in for yesterday. Reuben was stable and comfortable at the time and I'd had the expectation of him being home soon. Things change so quickly in our world. Reading the cardio report this morning the words typical physiology other than the "stigma of CHARGE" jumped out at me. I'm sure it's medical parlance and I haven't felt that stigma of late, but I guess it is there after all. It used to appear to dictate whether Reuben was deemed suitable for intervention, what was considered moral in terms of intervention.

There are people who find space in their lives to criticize me for taking photographs of every stage of our lives, just as I've done since the day Reu was born, the good and bad, it's been like a best friend always willing to listen, the writing and the camera, and criticizing whether I have any talent in doing so in the first place, but sobeit it. I can't change them.

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