OK, so they were right.
The doctors, dietitians, OTs and speech paths who said Deane would be better off with a g-tube were right.
The persistent cough that woke him – and us – frequently during the night has mostly disappeared. The amount of suctioning he needs is a fraction of what it was.
He is gaining weight and height. He seems to have more energy.
I guess I shouldn’t have been so resistant.
I was worried he would lose interest in eating and refuse to join the family at the table, preferring to sit in front of the TV getting his food through his g-tube.
My son has also proved me wrong. Following the eating clinic’s guidelines for soft ground food, he is pounding it back. He is eating more at dinner than I do – as you would expect from a teenage boy.
It has taken us a while to settle into a routine with the g-tube. Organizing government-funded nursing to administer liquids and one of his “feeds” (I hate this term) took weeks of phone calls in which the process was explained to me in repetitive detail. Although the professionals have always said it was up to me set the schedule, twice I’ve had to get a written prescription from our pediatrician.
I still regularly get phone calls berating me if I fail to provide anything the nurse needs – usually something forgotten during the rush to get on the school bus – but we do seem to be working it out.
My other hesitation about a g-tube was that it would “medicalize” our lives. It has. Syringes, gauze, medical tape and saline solutions surround Deane’s bed. Feed bags clutter our kitchen counter. It’s hard to pretend that everything is normal – or even how it was before.
But it isn’t the end of the world. We bought a pump with a custom-made knapsack so Deane can get his liquids without the obvious trappings of an IV pole. It is so inconspicuous that we often forget there’s something attached to his g-tube.
I’m not sure what I feared our lives would become. Deane’s g-tube is just one more thing to which we’ve adapted. With his hip surgery almost a year behind us and his g-tube done, there is no major medical intervention on the horizon. Looking forward, I see nothing but our routinely busy lives. It’s a wonderfully unfamiliar feeling.