Had to sit this morning and seriously study, just to work out that today was Friday.
Yesterday we met two other families from Northern Ireland, one renal who were rushed over in an emergency with just a few hours notice and the second also cardiac who had the scenario that had often been used when the debate about closing Belfast and moving everything to England was used, the baby needed emergency heart surgery but had been delivered by section, so her mother couldn't come with her, a difficult position but they're here with the same attitude - what ever it takes for my child.
Another big step forward - Evan is back onto theWard, albeit the high dependency section, but a step closer.
Those big eyes open and alert but too much going, hes completely knackered but fighting sleep at every opportunity. Jenny was able to sort his gastronomy connection so one less thing to worry about. Just looking forward to the electrodes going now as there are still alot of wires.
And the one thing I'm missing is just being able to lift him and hold him.
Its 11 o'clock on Friday night and I haven't felt as useless, Evan's in pain and has been sobbing and crying, the pain relief doesn't seem to make a difference, and he has managed about an hours sleep since lunch time so he's completely past himself, and just to add to things the medicine cabinet for this section of the ward is at the bottom of cot as well as the sink and bins and there's a continual flow of nurses back and forward.
1:30 - He's dozed for half an hour, and has woke again, paracetamol hasn't worked, oramorph hasn't worked they have now tried chlor but due to Evans short gut its an unknown how much if any of these he actually absorbs.
He hasn't looked this 'sullen' since the operation, its 3:30 and he is asleep, whether its the drugs or exhaustion I don't know and I don't care. I'm sitting here at the side of his hospital cot, and like any father if there was any means where I could take the pain for him I would, and I'd do it gladly. He managed 45mins before he woke coughing, and breaking my heart with the pain in his eyes that now seems so sunken into his head.
Had got him over to sleep again around 5 although fitful it is sleep, and at 6 a doctor comes to take blood, that could have been taken at any time during the night, and she wants to put in a new cannula, the one already in his foot won't do, the one already in his hand won't do, nor the central line, so Evans awake again, and doesn't even have the energy or will to fight.
I pray to God that our wee heart warrior gets back on form soon.
Cardiac ward round at 8:30, still keeping an eye on his heart rhythm, and the central line team, who are as the doctor describes 'an over subscribed team' have him booked in for the week after next, "so are they coming to Belfast to do it?" I was still able to ask with a smile, and the doctor replies with that all now familiar medical answer "it all depends on Evan."
Jenny has appeared for her 'shift', so I'll go back to McDonald's for a few hours sleep.