We have a lot of kit for Mikaere. Things that he might need. Our paedatrician once called our flat a mini hospital ward. When you walk into the spare room there are oxygen tanks. And there are nasal cannulas and a suction machine with a kajillion catheters. There is the stat monitor we cart around in the buggy, just in case. We have pumps and giving sets for the days that Kai’s too poorly to manage bolus feeds. We have a tool box under our bed. It’s filled with emergency just in case meds and IV equipment.
There are three giant plastic boxes in our living room. One is filled with just in case meds. Powdered antibiotics. Seizure meds. Movicol for constipated days and gaviscon for refluxy days. There is one for all the extra stuff. There is numbing cream just in case we need to do bloods, sterile kits, aprons and creams and spare ngs and all the rest of it. The third is a giant box full of enteral syringes, just in case we run out.
We have at least three boxes of medical latex gloves, just in case you’re doing something that requires gloves.
When we first got all the kit, the just in case everything was overwhelming. So much stuff. Now? Now this is our new normal. I can pack up the buggy in 10 minutes (thanks to being extra organised and having a kit ready to go), printing off an updated cheatsheet for the new whoever from whatever appointment, and gathered all the extra whatever we need for the day from our stash.
It works well enough. Mostly. However, it doesn’t work so well when I’m somewhere that requires me to park the buggy. It means I can’t leave controlled substances (aka seizure medication) in the buggy, and I can’t leave a tank of o2 just hanging about. Or quite expensive stat monitors. All of those things no.
An outing without the buggy to carry our gear requires some planning. An overnight stay requires spreadsheet-level organisation, and when we arrive at our destination, we descend with our equipment and take over the space.
Still, I find it comforting to have all the things, just in case. Sometimes it can mean the difference between being in hospital and not being in hospital, being able to manage at home or while we’re out and about. Worth it, hey? If I’m able to keep my boy out of the A&E, it’s worth it a million times over.
The reason I write this post is because I overheard a new father exclaim over the amount of gear they had for their (neurotypical) newborn. A wanted to share our perspective with him, but couldn’t, because I’m a stranger and was eavesdropping. It’s always about perspective, hey? Because from my perspective, all his stuff can fit in one bag. Food, entertainment, nappies + a change of clothes. I could fit that in my *handbag* and be positively delighted. We don’t live that life. So hey ho. Onwards we go with all our piles and piles of just in case stuff.
