When Sustenance Is Not the Goal

by Mindy

One side effect of kidney failure that Sam is experiencing is vomiting. There are medications to control this but it took us several days to figure out the right ones. This is where hospice rocks. Really. All I had to do was send an email to the hospice nurse telling her Sam just threw up his entire lunch even after we gave him an anti-nausea med and within hours she had contacted his doctor and called in a new medication. So now we have Sam on a twice a day anti-nausea medicine with another on hand to give as needed. This has helped significantly.

In those few days when Sam’s nausea was not under control there was a conversation. The conversation happened between me and the hospice nurse and included bits from a conversation she’d had with Sam’s nephrologist. It happened in the family room. Jackson and Clara occupied themselves upstairs. David worked in his office. My mom sat on the couch nearby. And the nurse, in her pink scrubs, stood opposite me near Sam in his wheelchair.

“I spoke with the doctor and she said if we can’t get the nausea under control with medication then it would be okay to reduce the amount of formula he gets,” said the nurse who is as sweet and gentle as they come.

“That makes sense,” I said. But because the amount of formula and water Sam receives daily has been carefully calculated to minimize the stress on his kidneys while still making sure he stays hydrated and nourished, I was compelled to ask “but is there a specific number of ounces we can cut out before running into problems?”

Silence.

“Well, no,” the nurse finally said, “you can just play with the amount until you see what works.”

Oh.

The logical part of me knew where this talk was going. But we were standing in my family room with the dog lying in her bed nearby, music on the stereo and photos all around of my three children, as babies and toddlers, lining the mantel and hanging on the wall. There was the black and white one of Sam as an infant when life with him was still scary and new. Next to it a close-up of chubby faced, smiling Sam. I could see Clara and Jackson’s artwork on display in frames or taped haphazardly to the bookshelf. And on the floor a toy chick Sam got for Easter; it chirped when it sat in his hand. This was a home where children are nurtured and loved and fed. And so I stubbornly refused to give in too soon to the logic. But she went on.

“As the body’s organs start to….” she paused, hesitated.

“…shut down,” my mom finished from the couch.

“Yes, shut down. Sometimes a person just doesn’t get as hungry. And you may find that Sam doesn’t need to eat at all.”

Even as she spoke the words, words I hated, I felt so much compassion for her. It was hard for her to say. It was no secret Sam was dying but to speak out loud about it in this way, a way that prescribed speeding up the process, felt disloyal. Faithless.

I didn’t respond. Or maybe I did. If so then I said, “There is no way I can stop feeding him.” Because that’s what I was thinking. Maybe it’s more appropriate to say I was feeling those words. So deeply.

Much of Sam’s life we have struggled to feed him.

When he was a newborn the goal was weight gain. The doctors’ solution was to insert a feeding tube through his nose, or into his stomach. We resisted and instead I’d spend hours hooked up to a breast pump and David hours feeding Sam milk through a bottle, both of us lying to the hospital staff about the length of time it took Sam to finish. In their estimation if he took too long he would expend too many calories and not gain weight fast enough. We just wanted to cradle him in our arms and give him the pleasure of suckling and tasting.

Despite our subversion he gained weight and we continued this struggle at home until at 7 months old we thought Sam was ready to try pureed food. He never learned to chew so for years we ground up the same foods we served his brother and spoon fed him. Peanut butter and jelly sandwiches, lentil soup, cake and ice cream. Mint chip was his favorite.

At 2, Sam learned to hold his own bottle and we celebrated even when he delighted in chucking the empty bottle across the room.

And when he went through a two-week period where he chewed up his lips and tongue so badly he couldn’t drink from a bottle, David and I fed him around the clock with a medicine dropper, like a baby bird.

Sam has a g-tube now, a permanent port that goes directly into his stomach. It got to a point where nobody but David and I could feed Sam, and with him in school full-time, he began losing weight.

Feeding Sam has been a battle. A worthwhile battle we have ardently fought. Parents feed their children. We don’t stop. But Sam gets nauseated easily. He sleeps more so he requires fewer calories. And his kidneys are shutting down. I understand this logic. And the reasoning resonates even more when, mid-feed, Sam starts gagging and I have to turn off the pump that delivers the formula to his belly. It’s the right thing to do.

But it feels like giving up.