What a difference a few days make. Pudding’s first enzyme infusion (ERT) was yesterday and I keep looking at him and seeing a little miracle; knowing that throughout his body there is enzyme working to chop away at the stored GAGs and undo some of the harm that has been building up for the last 3.5 years.
It was a long tiring day – the drive was never going to be a blast, and the M62 was busier than I expected at that time (setting out at 6.10am). But we still did it in about 1hr 45 minutes and almost the same on the way back. Hubby came with us for this first time to help find the way, but I’ll be doing it by myself most weeks.
True to form, Pudding’s veins didn’t play ball but the chap managed to get a canula in eventually. Niamh and Sarah, the ERT nurses were both around for most of the time we were there and had no-one else to look after. We managed to keep Pudding relatively calm and still on the bed with a combination of food, tv and a variety of toys. At one point, they even sent us away to have a coffee by ourselves, though I think we both found it difficult to relax, wondering what mischief he was up to.
Jane wasn’t there this week but she had left the present of a ball for Pudding as she knew how much he loves them. After lunch, Pudding was looking very tired and there was still a while to go on the infusion, so Sarah found a blanket for him to snuggle up with while still watching tv. At one point I looked up, and Sarah was watching him with such fondness, it felt like looking like my own expression. And this was after only really meeting him that day. I nearly cried. These people are so fantastic – if I was in the habit of using the language I would say how truly blessed we are to have them looking after us.
Last task of the day was to have some X-rays done – certainly a challenge keeping him still for that – and then we got back to the car for 3pm. Pudding was asleep before I even started the engine.
We’ll be back again next week, and probably another 10 sessions after that. But now I know what we’re facing. We can do this!