I turned away for just a moment, and when I turned back…. so cheeky!!
Kai regularly pulls out his NG tube. It’s one of the trickier aspects to manage – we want him to explore his face. Being able to hold up his arms and cross the midline to reach his face – this is huge for us. Kai only does it right now when he’s agitated, but that he *can* is a huge comfort to me. When he pulls out the tube I want to cheer him on (because it can’t be comfortable, not even close) but I also cringe, because I know we’ll need to put it back in again.
Poor baby. He’ll probably forever need a tube. He’s getting pretty good at taking his milk orally, sometimes taking up to half (!!) his feed. This is huge for us. there was a time when taking 10ml by mouth was a Big Deal. But even if we got to a full feed by mouth, we’d still need the tube for meds. Because eating is such a pleasure – an activity for which is there is so much socialising and joy (for some things. For kai – Chocolate icecream, yes. Avocado, no) we’d never want to build an oral aversion by forcing the sheer amount of medication by mouth. He’d stop eating for sure if we did that.
So, tube. We’re waiting on a gastrostomy referral – it means we’ll have the tube go directly through his abdomen into his stomach, rather than down his nose. But I’m torn – I’m so torn. Not because of the g-tube (which I’ve heard mostly wonderful things about) but the intervention decisions. We’re constantly trying to figure out where the line is between quality of life, and prolonging Kai’s life unnecessarily with the interventions we choose. It goes hand in hand with a terminal illness, and it’s so much more difficult when we’re in good times. When he’s awake and chatty and smiling at you. How do you know if you’re making the right choice?
Would the g-tube be worth it, the surgery and pain afterwards, if Kai isn’t to be with us that long? What if he *is* with us much longer than we expect? (Please, please, oh my days please). Would having a tube through his belly be more comfortable than down his nose? Would it be better for Kai? When should we do it… now? When he’s a bit older, if we get that far? Button? Mickey?
I don’t know what the right call is. We don’t know how to make the right decision… so we research. We talk to other NKH parents. We wait a bit longer for the referral.
In the meantime, I enjoy the scant hour of those beautiful bare cheeks before we have to put another tube ng in.
