A rare life – day 4

If there were any questions about whether or not Miss Z had fully recovered from her 5-day week at school, they were answered this afternoon. We went to a birthday party and Miss Z completely failed to cope. On the positive side, it was the birthday party of a lovely girl with a similar condition to Miss Z’s, so everyone was kind and understanding and I didn’t feel that I had to try to hide my grumpy, coughing, crying child. She did rally briefly during pass the parcel, but it was all downhill after that. She fell asleep on the drive home and, as luck would have it, was much happier when she woke up.

This evening has been all about preparing for tomorrow. We are heading to the hospital very early tomorrow morning for the surgical re-insertion of Miss Z’s GJ tube (remember that thing she pulled out the other day?!) and if all goes well, she’ll then get her Pamidronate infusion (which strengthens her bones). Neither procedure is particularly high risk and she’s had general anaesthesia before, so I’m not too concerned. But it all amounts to a very, very long day at the hospital.

I hate packing for a trip to the hospital, even if it is only a day admission, like tomorrow. I find it as stressful as packing for a holiday – or even worse, a work trip. I am one of those people who worries about getting to their destination and realising they’ve forgotten some crucial item.

In my defense, Miss Z does not travel light. Nappies, wipes, sick bags, feed pump, formula, all the necessary tubing for her feeds, emergency seizure medication, and several changes of clothes are all must-haves. Then there are the things that life at the hospital more comfortable for Miss Z, like her bunny, extra socks, her iPad and her pink blanket.

So, our bag is packed and our wheelchair-accessible taxi has been booked (for a painfully early 5.30am!) and I’ve laid out clothes for both Miss Z and me. My lunch is made and waiting (hopefully not to be forgotten) in the fridge. I can hear QB getting Miss Z’s chair out of the back of the car as I write. So long as I remember to put a phone/iPad charger in the bag before we go to bed, the crisis of the forgotten crucial item should be averted…

I’ll let you know tomorrow how successful we were at remembering everything!


Bunnies make hospital trips just a little bit better.



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