March 5 1999

My mother went home a few days ago. FH’s 43^rd birthday was yesterday. We left big brother Frankie with Nick at the hospital and had dinner on Granville Island. My husband needs me, but I don’t have a scrap of interest in intimacy. 

We’ve been in Vancouver at British Columbia Children’s Hospital for 37 days, and it feels like a year. I’m going nuts from sitting in a chair, hour after hour. I miss my home, and my own space. I miss the dogs, cats and horses and the physical busyness they bring: tossing hay, keeping the water trough full and free of ice. I ache from missing my healthy Nicholas, Frankie in his own bed, and our “normal” life. I wake up and still need time to orientate myself to this place, and the circumstances of this life we now have.

Nick’s mouth is healing. There are less ugly painful sores, and he says he feels better, but he still puts no food past his lips. His nutrition comes from a bag that hangs from an IV pole. A “kangaroo pump” measures the amount pushed through the nasogastrointestinal (NG) feeding tube going into one nostril. The nursing staff say he needs at least 100cc (half a cup) of concentrated liquid feed (really sweet – I tasted it) an hour. But he gets less than 25cc (5 teaspoons) and still he vomits – violently. 

“Mom!” Nicholas has just finished retching and is holding the cardboard tray under his chin. Coming from inside his mouth, and lying partially coiled up in the tray, is a long white tube. The other end travels from one nostril and is taped to the side of his cheek.

“Oh for…How many times is this going to happen?” I turn off the kangaroo pump and begin to pull the tape from his cheek. 

“Mom! What are you doing?” The tube in his mouth makes him sound like he has a thick tongue.

“I’m pulling the tube out. OK? We can do this. I’ll call the nurse.” I push the button on the call bell. Someone will come, but sometimes it takes a while.

“Are you sure? You don’t think we should wait?” He turns his face away from my hands, his expression telling me to stop. The tape is partially off his cheek. I step back from his bed and trying to hide my frustration, stretch my arms behind my back.

One hand holds the tray, and with the other he fingers the tape on his cheek, feeling the edges I’ve loosened. He’s thinking about it. This is the fifth time the freaking tube has ended up hanging out of his mouth.

“OK. Go ahead, pull it. But be careful!” And he settles himself sitting straight up in bed and staring ahead. 

I immediately step back up to the side of his bed before he changes his mind, or I lose my nerve (but I’ve watched them do this!), and finish taking the tape off his face, freeing the end of the tube.

In seconds I’m pulling the tube through his nose, out the same way it went in, and he’s screwing up his face, his mouth open, fighting the gag reflex, until the whole thing is lying in the cardboard tray, like a long white worm.

Yesterday, we were in the out – patient cancer clinic and he threw up the NG tube. Nurse Laurie fed this one through his nostril, down the back of his throat, down the esophagus and into his stomach. Nick managed with minimal gagging. By now he could probably insert the damn thing by himself.

Cute, sweet and tough as nails