Like you, we are worried about our loved ones with Rett Syndrome, working hard to make the right decisions about their care, and trying to do as many practical things as we can to ease the worry.
Reverse Rett Vice-Chair and mum to Lauren, Helen Simmonds, wrote to us earlier this week with these things in mind, and a super-useful list of things to pack in a hospital bag just in case that trip is needed.
Helen and her family have unfortunately had plenty of practise at hospital-packing over the past year as Lauren has had several emergency trips, so knowing how nerve-wracking these moments can be and that many of us haven’t had to do this before, Helen thought a go-to list would mean one less thing to worry about.
Of course we hope that none of you will need this and that all your loved ones stay safe and well in the coming days, weeks and months, but if you should need to make that trip, we hope this does help make it just a little less traumatic.
If you have any practical tips or suggestions on how to keep sane/busy in these challenging times which you’d like to share, please get in touch – we’re all in this together.
Hospital bag checklist:
For person with Rett Syndrome:
- Changing stuff – pads, wipes, sacks
- Bed socks
- Favourite teddy/toy
- iPad/DVD player + charger
- Favourite book(s)
- Wash bag – toothpaste, toothbrush, hairbrush, soap, flannel, hand towel, hand gel/sanitizer, scrunchie
- Hospital passport and/or
- List of medications printed to hand in – name, d.o.b., hospital number, meds, doses, times
- List of professionals involved + contact numbers, printed to hand in – name, role, contact number + school/respite/hospice details
- Box/bag medications (especially if prescribed any not commonly used in children’s wards, as pharmacy will likely not have in stock to prescribe immediately and need to order in)
- If peg/button/gastro fed – feed, syringes, extension tube, giving sets, pump (enough for a couple of feeds until situation established)
- Favourite snacks
- Drink cup/straw
- Your own wash bag and toiletries
- Notebook + pen
- Own medication
- Phone + charger
- Nightwear and change of clothes
- Purse including cash
- Snacks and water
- A good book/Kindle