This is a crazy one. Everyone knows Kai takes medication. It makes sense, he’s a kid with special needs and in the medical world it means fix what we can with drugs. That’s how the medical industry works, mostly. I’m not getting down on it, drugs means we can reduce Kai’s glycine levels in his blood. It means we can give his brain a break from the seizures if we have to. It means we can, somewhat, help him.
Kai is on a six hourly schedule – every six hours he gets 6-7 different medications (not including the 2:30pm stint where we give the one medication as far away from the other meds as we can).
His entire routine is set around these medications. He can’t tolerate some of the meds on an empty stomach, some require an empty stomach. so we do some meds, we feed him, and we wait 15 minutes and do the rest. Because of this Kai is eating at least every six hours, we typically do five meals a day. No snacks, just meals with additional water flushes.
Different to your typical toddler.
It’s also tricky getting the meds sometimes. Two come from the hospital (where one is ordered in from the states for us and the other is way off license use). Ten meds we can order through our gp/pharmacist, and one vitamin I order through Amazon. I do a stocktake once a month and request all the things when we’re getting low. I’m also the one in charge of asking for dose reviews. Kai’s weighed every three weeks or so by our health visitor, which dictates some of the dosages.
If I think Kai needs to go up or down (it’s pretty easy to work out, once you know the mg/kg/day ratio) I email our consultant, and cc in our community nurses. They’ll let the gp know so the next time I order through everything is on the correct dosage.
In the beginning it was overwhelming – leaving the house to go anywhere that wasn’t a five minute walk away because a logistical nightmare. I’m glad we’ve adjusted – I’m glad it’s not overwhelming anymore … it’s become a routine now. Typically I’ll do the 6am meds, and Sam will do the midnight meds if it’s just us. If we have overnight help it’ll be the nurses. During the day it’s typically me, or Sam if he’s home or the nurse if we have help. We have a little medication station where all the meds are, with some made up earlier in the day and some in the fridge. It’s pretty much overtaken our counter space, and our cutlery drawer is now shares the space with syringes. We have stuck giant whiteboard paper up, and written Kai’s med schedule where everyone can see it.
We’re making it work, because this now is our normal. A crazy amount of medication and the never ending syringe sterilising and 6 hourly meds – this is our normal as part of the special needs path.
The things we do, hey?
- The images were all taken by the amazing Kami at Kai’s 1st Birthday Photoshoot
- The whiteboard contact paper we use is this one on Amazon, with these whiteboard pens. The scatter tray we use for meds is this super pretty one here.