After all the emotion last week, I thought I’d come through ok.
Then on Monday while shopping for a picture frame, I had a phone call from the Healthcare at Home manager. She said that given Pudding’s reaction last time, she wasn’t happy with his next ERT being done at home. Whilst I understood her position – she has to consider the safety of her staff who would feel responsible if anything went wrong – I was devastated. After 3 weeks of home treatment it was being taken away from me again.
I knew that it would be difficult to arrange the transport to hospital at such short notice, so I’d have to drive again. And I still had other things to do two days before Christmas. My first instinct was just to say we won’t go. But that felt so selfish. Of course, I just ended up sobbing in the middle of the shop.
When I got home, our specialist nurse from Manchester rang. She knew exactly how I was feeling. She said they’d look into getting transport sorted, but that it would also be difficult to get the Elaprase in time. Given that it has to be kept refridgerated, I’m not meant to bring our own supply from home. She raised the possibility of having a week off treatment but wasn’t sure if it would be clinically advisable for him at the moment, so needed to check with the consultant.
Ten minutes later, she rang back again. We have a holiday from ERT this week, and will go in on the 29th instead. Best present ever!