It’s been almost a week since I wrote on here. Not that there hasn’t been things to update, but more that I was at a loss about how to write them. Having felt so much happier lately, I didn’t want to ‘spoil it’ by writing when I was in the middle of a downer. Which is silly really – I started this blog to act as a warts-and-all diary dump of what we were going through. To capture the ups and the downs of a life with Hunter Syndrome. I shouldn’t feel ashamed about admitting to those downers.
Pudding’s second general anaesthetic didn’t go too badly. We were based in the Clinical Research Facility ward, so had more personal attention than on the general list, which always helps. And there wasn’t much invasive work being done, so I was a bit more relaxed. But there is still an emotional toll to pay. Knowing that I would be driving home the next day, I chose to use the hotel room that the study had paid for. Just as the taxi was called, Pudding threw up – not unexpected after the last time. I knew he’d be ok, with the nurses and Hubby there. But after the taxi ride (marked by a distinct disregard for the use of brakes) I cried in the hotel room.
At home on Thursday we started his ERT later than usual as it was the Christmas party at his playgroup. All went reasonably well at first. After a bit of a struggle he did go to sleep on Hubby while I did the school run, but when he woke up at the end of the infusion he wasn’t at all happy. The TV went on of course but it wasn’t helping. I made him an omelette for tea (his favourite) but he only ate a few bits that I fed to him, and the high-pitched whinging wouldn’t stop. He then vomited again, but rather than make him feel better as it usually does, he carried on crying. As this went on longer the nurse and I were both starting to get worried, wondering whether it was a reaction to the lumbar puncture. After speaking to the on-call metabolic consultant, I was about to head out the door to A and E. At this point, after an hour and a half of crying, Pudding suddenly said ‘Du!’ (for juice), picked up a piece of bread and started eating. The relief was amazing.
Five minutes later, our consultant rang and dropped the bombshell – after a reaction it’s usual to have to do the next infusions in hospital again… I had already been feeling emotional that morning, but that opened the floodgates again.
I cried the next morning when Pudding hit me in the face and I wanted to hit him back.
I cried while Twiglet comforted me.
I managed not to cry at school drop-off.
I cried when Pudding was miserable on the way to playgroup.
I cried when I got back to a messy house.
I cried when my sister sent a message telling me to come round for a bath.
I cried when I got there.
I cried during our Portage session.
Yes, I know. It was a lot of tears. Probably over-due!
But I’m back on an even keel again now. We’ve had confirmation that our next ERT can still be at home, with a bit of an adjustment in the meds again. Pudding is almost certainly on the clinical trial (they just need to double-check his DNA to make sure the genes either side aren’t badly affected).
And I am looking forward to Christmas with my lovely family.