Tuesday: Oxford (Day 1)

My first thought as I woke up this morning was "Is Daniel alive?". Not a great start to the day.

Sarah had sent me a text at 1:45am. They'd wheeled her down to SCBU to send Daniel off on his ambulance ride to John Radcliffe. She'd also sent me the phone number for SCBU over in Oxford. I gave them a quick call. They confirmed that he'd made it over there in one piece and they were looking after him. I hopped in the car and headed over there. I saw Daniel like this when I got there: 

Daniel was being looked after in what is termed the "Hot room". I'll give it that - it was hot. It was also alive with sounds, beeps, alarms, babies crying (there were 4 other babies in the Hot room) a very confusing place. Always something going on. And so much equipment, this is just Daniel's corner:

So with my concentration flitting from alarm to alarm, beep to beep, I settled down on a stool to concentrate on one thing. To try to drown out everything else. I chose to concentrate on Daniel's breath. Watching him breathe, up and down, in and out, gave me something to do. Now babies stop breathing every now and again. Everyone does. Everyone pauses. And then has a deeper breath, it's natural. So fairly soon after I started watching him. He stopped breathing, which didn't concern me particularly. Until I started counting to myself

"1 .... 2 .... 3 ...."

"6 ... 7 .... 8 ...."

Now he's on a machine that's breathing for him. That screen in the above picture on the left hand side. So in retrospect that's weird.

"9 ... 10 ...."

"Erm... he's stopped breathing", I said loudly. 

Three nurses descended. One unhooked the ventilator and started manually ventilating him, I remember the instrument labelled "NeoPuff". No idea why that stuck in my mind. Two other nurses looked at the Ventilator.

"'System Error 342', never seen that before."

No beep. No alarm. There are frikkin' alarms going off every where, except here. Obviously they'd have found out when his heart rate changed or another alarm went off, but that's not the point.

By the way, none of this is to disparage the work that the staff do there. They were absolutely awesome, couldn't fault a single one of them. They all deserve medals.

So Daniel was on three drugs. (At one point he did have 5 pumps, but I didn't manage to get a photograph of that set up.) Additionally he had a TPN pack, a nutritional supplement / replacement. Basically glucose, vitamins, minerals and fluid, everything a growing boy needs. So these three drugs are Dopamine, to control his blood pressure, Morphine for pain and Vecuronium, a paralysis agent. Quite difficult to watch as all that Daniel could do was slightly open his eyes and roll them. 

Children with a Diaphragmatic hernia have a predisposition to heart defects and one of the cardiologists at John Radcliffe spent a good hour and a half scanning his heart. She did find something but was unwilling to discuss it with me until she'd consulted with one of her senior colleagues and evaluated what it was.

So I stayed with him a few hours. John Radcliffe were very organised and provide parents with car parking tickets so you can park for free. So whilst they were scanning his heart, I wandered over to the car park attendant with my filled out form and got a car park ticket.

But then, difficult as it was, I had to leave. That's the thing about Twins, there are two of them. And Sarah was also still recovering from her operation, so I headed over to Stoke Mandeville in the afternoon so see the other two members of the Cleaver troop. They were doing fine and here's a picture of Alex: