Remember that feeling when you have a newborn baby and you try to leave the house? You check and double check the bag – nappies, wipes, nappy bags, change of clothes (x2), bottle of milk etc ... It seems to take forever to get anywhere and the amount of packing and checking involved is no less than you used to do for a week away.
You thought that was hard?
These are our ESSENTIALS for leaving the house!
From left to right:
Bag 1: Black rucksack style bag - Feeding kit containing ...
2x giving sets
2x 60ml syringes
Bottle of cooled boiled water
500ml container containing H’s ketogenic feed
Bag 2: Long black bag with the patterned Disney store carrier attached – the life saving resuscitation kit, for use during seizures, containing ...
Portable oxygen cylinder (in the long black bag)
Bag and mask (in the Disney bag – the original bag it came in fell apart and I thought I’d use something a bit brighter to carrier it in)
Bag 3: The changing bag
change of clothes
extra socks for H’s hands (so he doesn’t pull his NG tube out – but they often get wet as he sucks them so need replacing often)
spare NG tube (just in case he pulls his out)
Tape for fixing NG tube (duoderm, hypafix) & scissors to cut it
antibacterial hand gel – in case preparing feed somewhere they don’t have soap
clobazam – medication for clusters of seizures, plus 10 ml syringe
Blood testing kit, with ketone strips and blood glucose strips
Seizure management plan – a 3 page detailed care plan which outlines what to do in the event of a seizure, written by his consultant paediatrician, in case we need to call an ambulance or end up at a different hospital.
That’s the bags I take with me everywhere I go – dropping Cheeky to nursery, popping to the shops, hospital appointments or going to a friend’s house. I have a list by the front door that I check each time I leave the house! I also have a bag in the boot of the car packed and ready for any emergency hospital admissions which contains clothes & toiletries for us both. Having it packed in advance means there are no last minute panics when the ambulance arrives.
So there you go! Little H doesn’t exactly travel light does he?
This post is written as part of the bloghop #definenormal. Pop along to Just bring the chocolate to find out more, join in and get a funky badge too, just like the one on the right! :D