What can I say? That was yesterday, this is today …
Adam's been home for the last couple of days, doing fine. He was discharged into our care and we've been taking care of him. We flirted with the idea of letting him go to school but erred on the side of caution and responsibility. He's been totally fine except for some pretty dry skin caused by the retinoic acid that he's back on, and which seems to be worse than it has been for a while, but maybe that's because we're back to the original schedule of two weeks on and two week off.
There's no doubt our lives are a bit of a mess and have been for ages now, but we try to do the best we can by all our children, even though it's hard on them at times and sometimes they don't always see it. Today Jessica was representing her school at a sporting event in Guildford so naturally Alison wanted to go and watch. It can't always be about Adam. So I ended up working from home and his Lordship stayed with me and did his own thing in the back room where he wasn't any trouble. Every now and again I'd hear him trundle up the stairs and come back down with some or other thing to play with and he'd head back off into the back room again. I made him some lunch, he ate it, complained he was still hungry, asked for more food, I obliged. All very good and proper.
The phone rings.
It's the doctor from Epsom Hospital.
Previously there'd been some mix up about whether the bacteria they'd grown had come from the red or white lumen. We'd assumed red, our money was on red. The paperwork had said red. Yet the written note said white. So I thought this was clarification one way or the other. Well it was clarification … of sorts.
"I've spoken to the microbiologist and this is what's grown from Adam's blood cultures. On the 1st they grew Micrococcus from the red lumen and Diphtheroids from the white lumen. On the 3rd they grew Gram-positive cocci from the white lumen. On the 4th they grew Gram-negative rods from the white lumen."
Bloody hell. So much for Adam having an infection. He, or more likely his lines, are riddled with them.
I spoke to Adam's consultant and we agreed the best course of action would be to arrange to have his central line removed. In the meantime he'd need to be started on two more antibiotics for the Gram-negative infection, in addition to the one he was already on for the Gram-positive. Also, it was best if he was in the hospital as the potential for a Gram-negative infection to very quickly turn nasty was much more of a serious threat than had been the case before with just Gram-positive.
I explained everything to Adam. He didn't complain at all about having to go back into hospital. He got quite upset though when I told him we were going to have his line taken out, and actually started to cry in protest. I guess it's become a part of him over the two years and seven months that he's lived with it; part outside him, part inside him. He was five when it was first put in, he's a worldly-wise eight year old now who's seen, and been through, more than most.
I took him up the hospital soon after 4 o'clock to have his antibiotics, which of course weren't written up and ready until gone 6pm - at precisely the same time that meals-on-wheels arrived with our food. No problem, the nurse was very nice and didn't seem to mind being sent away again until Adam had finished his tea and we were ready.
The kids played on the Wii for a while and then it was time to leave Adam and Alison to it. All that remained was to pay the four pounds that it costs to leave your car at the hospital for two hours, and for the rest of us to return home.
So that's us. Instead of being a 5 we're now a 3 and a 2 again. Me, Jake and Jess are back at home, Alison and Adam are back at the hospital. We've got no idea how long this stint inside is going to last. At least Adam managed two nights at home before he got banged up again. And I suppose we should be thankful that he isn't actually unwell …