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It’s all about winning the war

Deane on the tilt board at 45 degrees.

Deane on the tilt board at 45 degrees.

We had a number of victories today.

Deane had the best night’s sleep he has had in more than three weeks. Don’t know if it was yesterday’s first real physio workout or adding melatonin to his drug regimen, but it worked. If we can repeat it tonight, it will officially be a streak.

In yesterday’s workout, he was on a tilt board – imagine lying on a teeter-totter – raised to 30 degrees so that his legs took a little bit of weight for the first time. The therapist’s goal was to raise the board 5 degrees at a time. Today Deane blew that out of the water by going up 15 degrees to 45 and staying on the board for 45 minutes.

At lunchtime, Deane was cleared by the feeding clinic’s speech-language pathologist for eating minced food and swallowing thin liquids. This is someone we were scheduled to see in 10 days anyway. She said he controlled both and swallowed safely. So we have the full green light to feed Deane and give him water. A major step back to normalcy.

Then we had a psychologically big loss.

After getting the all clear from the feeding clinic, the dietitian turned to me and said “So there’s still the issue of his hydration.”

Never have I thought so much about how much anyone, including Deane, drinks. Before Deane pulled his NG tube out on the weekend, he was receiving four bottles of a commercial calorie-enhanced liquid meal replacement (formula for adults) plus four 100 mL of water to flush the tubes. The dietitian feels he needs to replace all that fluid.

Since Deane had pulled out his tube, we had been syringing water into his mouth. Two days ago, he developed a very mucousy cough and was constantly thirsty because of the stuff he was coughing up. We kept track of how much water we gave him. It seemed like a lot but only amounted to 100 to 200 mL.

The dietitian has said repeatedly that it is not enough to keep him hydrated. If he is not properly hydrated, he will not have the strength to do his physio, go to classes and fully participate.

Therefore, she concluded, moments after Deane had been cleared to eat, we need to put in an NG tube. “What did I think?” she asked.

“I think you know my opinion,” I said, although the question was mostly hypothetical. I resent the clear pain and discomfort Deane goes through as the tube is threaded up his nose and down his throat, I think it makes it harder for Deane to eat and drink and it makes my son more medically involved than necessary.

I realized that this was an unwinnable battle, so I developed my strategy for the next round. The tube was to be used for fluids only at night and if it seems to be hindering Deane’s eating it should come out.

They agreed to meet again in four days.

The dietitian came by later to inform me that she had written the orders to reinstitute the four bottles of formula, but not the water. She had outflanked me because I had not been clear enough on what kind of liquids he should be getting. I think Deane will lose his appetite if he is getting a full day’s nutrition through the night. Her concession: I’m supposed to write down everything Deane eats and drinks so we can “re-assess” whether he needs the full feed.

So Deane is sleeping off his intense workout with an NG tube taped to his cheek. I’m not usually one to use militaristic metaphors, but it has been hard not to see it that way.  Stay tuned for the next battle in four days.

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