Food vs. nutrition

“Thanks,” I said and I meant it, but it didn’t sound that way.

I was trying to be appreciative of people doing their job with the best of intentions. But the tone of my voice was frustrated, angry, even sarcastic. The problem was I didn’t like what they were saying.

In their opinion my son had shown no sign of improving his ability to chew and safely swallow food so they were going to put a NPO – no food by mouth – order in his file until they could re-assess him. Because of the holidays, they are not back for four days.

This is the second time I hadn’t exactly been Miss Manners with the speech-language pathologist and the dietitian. Yesterday I was quite forceful in my attempts to make sure they understood that my son has been eating and drinking for 14 years without a case of aspirational pneumonia or other serious incident. My goal – and this is what I asked for their help with – is to get back to what I know he can do.

Despite – or maybe because – of my poor manners, they stayed on message: he is letting food pool at the back of his throat and not swallowing it in an effective or safe manner. He cannot have any food or drink by mouth.

I should have known better than going ahead with today’s assessment. Deane had just spent 20 minutes shouting through a shower. He was in bed, which to him means the TV must be on, reclining. The latent anger over the shower, the distraction of the television, the three-person audience and the food – diced up bread with minimal margarine and jam – were sure-fire ingredients of failure. I should have told them to come back later, but somehow in these institutional organizations I get the feeling that’s not an option.

So here I sit, facing four days in which I can’t feed my son. So what? I think my frustration is largely that  instead of progressing, I feel like we are regressing. He was eating and beginning to drink at the surgical hospital before he was transferred. Although they repeat the mantra that I know my son the best, I get the sense I am not completely trusted to work with Deane in the manner that has gotten us this far. I didn’t ask for their help with feeding. I wanted some assistance helping Deane regain the power to suck through a straw.

I truly understand that everyone has my son’s best interests at heart. So do I and I’m not on holiday for the next four days.



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