Since Kai has woken up he’s pulled his NG tube out four times in three days. We’ve had to mitten his hands to keep him from yanking it out. I struggle, because I can’t imagine the tube is pleasant. He gets his feed pumped into him, 140ml of milk over an hour and half, followed by a 2.5 hour break. He’s so frustrated, when he’s hungry he lets you know, but he’s so unsatisfied by the slow dribble. He can’t suck in a coordinated fashion and we worry that he’ll aspirate himself so he has the tube.
Every now and then we’ll try a bottle, but he struggles with that. Sometimes he’s fine, sometimes he’s not. And until he can be consistent with the bottle, he must have the tube for his meds.
He may always have a tube. We’re beginning to think about a g-tube. A tube directly into his belly. I’m pretty sure it’ll be easier and more pleasant for everyone, though it’s definitely an idea we’ve had to come to terms with. In the beginning, I was determined to get him home from the NICU so I could pretend that NKH was some terrible terrible nightmare that we could shake off. And for three beautiful weeks, it was. Sure there was the daily meds, but it wasn’t this. It wasn’t 24/7 nursing care. With the feeds and pumps and syringe drivers, with the four-six hourly meds and hourly checking of his subcut – the needle his has in his leg so they can pump anti epileptics into his body around the clock.
I can’t change any of those things, and I’m sorry that when Kai pulls out the NG tube we have to hold him down to put another one back in. Still, every time he does it I want to high five him, and silently cheer him on for fighting it. Everyday, he fights.
He’s getting pretty good at getting the mittens off too. You go little guy.