Well, that I was a full-on few days…
Setting off at 5.30am on Tuesday was easier than I thought seeing as I’d already woken up an hour before. Dark though, and it was tipping it down with rain so visibility was not great. Once we hit the M1 there was a traffic jam and right after we ended up driving on a newly-tarmacked surface – the heat was turning rain to steam and for a while I couldn’t see a thing. Scary! The rest of the journey was slightly better apart from a scare when someone slammed their breaks on just in front of me. And we did get to the hospital bang on 7.30.
Withholding food and drink from Pudding actually went better than expected – he only asked a couple of times before theatre (9.30) and was otherwise pretty well distracted by TV and playing on the tablet. I lost count of the number of people coming round to see us though – trainee anaesthetist, ENT registrar, portacath surgeon, consultant anaesthetist, theatre nurse, ward nurse – even Niamh and Claire came by to say hello (and got a lovely cuddle from Pudding).
Hubby took him in for the anaesthetic and came back in tears. He said it just happens so quickly – Pudding was knocked out and whisked away. We went for a (rank) breakfast in the hospital restaurant and then sat down to wait for the 2 hours expected. That went by. Then another quarter hour. Then another. And another. The ward nurse said ‘The waiting is the worst bit!’ and I agreed. But it wasn’t – that came later.
When they came and said ‘They’re ready for someone in recovery’ I leapt up. He was lying on a trolley, still with his eyes closed, being monitored. My throat closed and the tears welled up. His mouth opened in a cry as his eyes screwed up tight. I tried to reassure him but could hardly get any words out. I never want to see my child like that again, but I know I will. We were wheeled down to the High Dependency Unit, where he had to stay for the night, as a precaution.
Pudding was sounding so miserable and I climbed onto the bed to try and comfort him, but it didn’t really help. Even the TV only helped a bit. He had a bit of cordial and a mouthful of toast but wasn’t really keen and no wonder – a while later he was sick and that carried on for a while. It wasn’t too frequent, but he certainly wasn’t keeping anything down. He slept a bit, ate a bit, drank a bit, ate a bit, watched TV and whinged for the rest of the afternoon. He got some more anti-sickness meds around 6pm and after that wasn’t sick any more thankfully. Through the night, he woke up a few times while I was upstairs in parent accommodation failing to sleep myself, but the nurse coped ok with him. He obviously wasn’t in the mood for his usual night-time partying!
The next morning we were still on HDU and Pudding was eating well, but fairly compliant still. The paracetamol and ibruprofen were obviously still keeping the pain levels under control. We had his ERT done by Niamh while we were still there – using the port for the first time. He did seem to get a bit of a temperature for the second week running – hopefully not the start of an infusion reaction as that would mean they would have to be slowed down. We were done by 12.30 but didn’t actually manage to leave until after 3.30 due to various admin problems. Very frustrating. It was fantastic getting in the car knowing that we were heading home, though the high-pitched ‘Bnng, bnng, bnng’ of the monitoring equipment in HDU followed me much of the way.
Highlights were Hubby and Niamh pushing me out the door to go get meals at various times, including going outside to eat real food from M&S sitting in the sunshine. Felt wonderful.
Feelings I was left with: gratefulness that Danny was obviously not nearly as ill as some others on the ward, but despair that this will not be the last time we’re in a similar situation, and things may get worse.
By a coincidence, Niece happened to see a programme last night which apparently had a Hunters boy in it who died. This was the first she knew of the potential shortened life span and it obviously upset her, so Sister had to have a difficult talk with her, saying that yes, it might happen but we just don’t know at the moment. Not nice. Twiglet still has no idea of that, and I’m not sure when we would address that, even if we do find out.
Last night when we got back Pudding was playing football outside, so happy to be released. I said that he had been stuck on a bed for the last two days and Twiglet replied, ‘Having Hunters is horrible.’ Yes, love, it sure is…