Christmas was good. We were all at home, together, as it should be. Adam had a very disturbed Christmas Eve night, and Alison had taken to sleeping on his bedroom floor. And during Christmas Day he was in varying amounts of discomfort at various points throughout the day. Once he was set in a comfortable position, however, generally things were fine until it came time to move again. He needed carrying to and from the toilet, and between rooms when he wanted to play elsewhere. But play he did; Skylanders, Lego Lord of the Rings, Uno Roboto (which our kids have been having tremendous fun with), and general waving of assorted Power Rangers and Ben 10 weaponry from the relative comfort of his vertical position on the sofa.
During the course of the late morning we got a phone call from the Paediatric Registrar at Epsom to say St George's Hospital had called, they had found a cubicle for Adam, and could we take him up there now to be examined. An offer that I politely declined. Tomorrow we'll go anywhere you need us to be, but today is Christmas Day and we're not going anywhere until Adam's bedtime unless something happens to make it absolutely necessary.
We planned to eat a cooked meal in the evening, and whilst the rest of us ate at the dining table Adam remained in the lounge waking up from his late afternoon nap. When he did start tucking in (I use the term loosely, in fact he was being fork fed as usual by Alison and I), his dinner was interrupted by what Adam first described as him having pooped his pants. On closer inspection, however, it transpired that his perianal abscess had burst through the skin externally and was oozing puss. A small clean up operation followed, and we shoved some gauze up there and got Adam back to his turkey.
Around 10pm, after giving him his GCSF shot at home, we took him up to Casey Ward at Epsom General, as agreed, to begin his antibiotics. With the abscess having burst Adam was slightly more comfortable; the intense build up of pressure that had been steadily increasing over previous days had been released.
On Boxing Day St George's informed Epsom that they would see Adam later that afternoon. So, after getting blood and platelet transfusions I took him up to be reviewed by the surgical registrar. Expecting to get there and start his afternoon course of antibiotics I was still sat waiting, having been seen by nobody and with no antibiotics having been written up by a doctor, nearly two hours later. When the surgeon did come in and examine Adam his view was that the abscess had drained well but was not entirely free of puss. Coupled with an exit wound that was too small, the overwhelming likelihood if left was that the wound would heal and the abscess subsequently reform. The necessary action was to put Adam under anaesthetic, clean out the abscess properly (during which it could also be properly examined to see it's full extent), and widen the exit site to roughly double it's current size. It would then be packed with gauze, and once Adam was back home he'd need to have regular salt baths to enable the abscess to completely drain and heal.
The evening surgery list was light, so I was told, they could do it that night. I wasn't expecting anything other than a review, nobody had suggested they might want us to stay. After some deliberation, it was decided I'd take Adam back home, we'd give him his GCSF shot, Alison would collect his medications and overnight things from Epsom, and then drive him back. He'd be back at St George's as soon after 8pm as we could get him there. He'd miss tea and not having anything more to drink.
We rushed around and Adam was back just after 8.30pm. At which time Alison was informed that an emergency has come in, there was only one surgical team operating that evening, and there so no longer a slot for Adam; the new plan being to schedule him for the morning. I was fuming. Absolutely fuming. If I'd been told the actual situation instead of 'the surgery list looks light' I would have made a different decision. And, as I've subsequent come to realise, being operated on in the evening on Boxing Day is never the best; a tired team, lack of cover, make any complications potentially more serious.
So thanks to my decision, led by the surgical registrar, Adam was stuck at St George's having not eaten anything since lunch, and not drunk anything since mid-afternoon. Everything was shut, and there's no access to food within the ward itself (not that you'd necessary want your child to eat it if there were). I'd been duped by medical care that was only interested in what was on Adam's backside, not by the overall picture of what is going on with him. We care about his weight-loss, that he has to make counts in order to get the IVs that are due at 4pm on Thursday at The Royal Marsden. We care about him being able to have some modicum of a life beyond the four walls of a hospital room.
So Adam is now scheduled for the morning list. If he's not gone down by 9am he won't be going because we're not jeopardising his Marsden visit to get Zometa and Vinblastine. And we also won't be going from St George's straight back to Epsom so he can get the next dose of the 4 IV antibiotics he's on, that take a total of between 2 and 3 hours to infuse (he doesn't actually get all 4 every 8 hours). If they want him to continue antibiotics as a precaution against the infection getting into his bloodstream, they can come up with a combination of orals and/or once-a-day IV pushes that maximises his time at home, and minimises his hospital time.