Message received

The dietitian’s accent is strong enough that I don’t catch every word and my voice is so low that he has to ask me to repeat myself.

But the message was loud and clear: Deane had lost weight since coming out of the hospital and the dietitian is referring us to the g tube clinic. We have until September to show some improvement.

I have written before about my reluctance surrounding Deane getting a gastric feeding tube (The Weight Crisis in my House). In that blog, I said that I don’t want a g tube because it will make Deane “medically complicated.”

I still feel the same way.  But three months in the rehab hospital while Deane recovered from hip surgery and everyone else obsessed about his eating and drinking heightened my already intense sensitivity to his weight.

Immediately after getting out of the hospital, Deane got sick – a cold, nothing serious – but he did not eat well. It took us a couple of weeks to get into a routine. It seemed to me that he had put on some weight and solidity since then. Not much, but when you weigh as little as Deane does, it is noticeable.

But the scale doesn’t record video. It takes a snapshot. A snapshot that says Deane is ½ a kilogram (about 1 lb.) less than when we came home. It’s not much, but it is the trend that is troubling.

And there is no clear-cut reason. I can’t point to anything as the single cause. The best I can do is a number of potential causes.

For the last two months, Deane has been coughing himself awake three or four times a night. He is gaging on phlegmy secretions that are pooling at the back of his throat. This means he is tired in the morning and not very interested in breakfast.

He is also not drinking as much milk after school as he did before his operation. It seems like he is working harder to pull the milk up the straw. Also, the personal support worker arrives at 5 p.m. to serve him dinner – much earlier than we used eat, eliminating about an hour of milk drinking time.

After dinner, he only wants to watch TV with little interest in dessert or more milk. By 7 – 7:30, he’s ready for stretches and bed.

Do any of these relate to his weight loss? I don’t know. Would finding a way to raise the head of his bed reduce his coughing and make him more awake for breakfast? Would sourcing a straw with a valve so that he didn’t have to draw the liquid all the way from the bottom increase his milk consumption? What would happen if we moved his dinner to 6 p.m.?

I’m not sure if resolving any of these issues would significantly improve Deane’s weight. At this point, I’m desperate enough to try anything.

When I last wrote about the g tube issue, I said I was having a hard time taking the possibility seriously. That’s not my problem now.


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