Rotary Flames House

He lies with a camera in his face. Appropriate for such a photogenic kid, and also handy. Because at Rotary Flames House, Trish and I are two doors away.

And we're not even the ones watching the monitor now.

The hospice on the same property as the Alberta Children's Hospital was built in 2009 for $12.5 million. Its title sponsors gave a combined $2.5 million. Walking through the place it's easy to see where the money went.

A gigantic kitchen, where a private chef plates lunch and dinner for families (and their guests, who are the only ones who pay). A teen room replete with gaming setups, surround sound TV, piano and comfy couches. A magical sensory room of lights, water, mirrors and sounds. The Flames Room, with air hockey, tabletop hockey, giant bean bag chairs and a store's worth of team merchandise garnishing the walls.

Then you go upstairs, where the guest rooms are. The majority of visitors here are severely handicapped, their parents leaving them in the best care while they get some respite.

And then there's us, the families in what you would call end-of-life care. We get one of the two suites, which are really three rooms in one. Dom gets a room, with nurses watching him 24/7 and responding to anything he needs. Then there's a living room, with couch, recliner, TV, fridge and microwave. Then our bedroom, a king size, sleep number bed. Giant doors between each keep noise to a minimum.

The noises of this place take some getting used to. The first night Trish had to take a clock down from the bedroom, its tick-tick-tick the only thing she could hear.

When I got here it seemed too quiet, like a tomb. But that's what happens when you've been immersed in the beeps and constant wake-ups of medical care for nearly two years.

The noises of the kids is even odd. For some, normal communication sounds like pained screaming. At first it's troubling, until you accept they're not in pain.

Dom's not been happy. He whines loudly, has slept almost the entire time he's been here and won't let anyone but Trish cuddle with him for the most part.

But he's also shown positive signs, opening his eyes, wanting to ride around in a wagon every second day and giving thumbs up when you do something he likes.

His tummy is huge, requiring bigger diapers and clothes. His face is puffy; he pulls out his oxygen prongs which are delivering more air than they used to because of the fungal infection in his lungs.

But this is the right place for us all now. Not Disneyworld, which is pretty much off the table unless he dramatically improves. Not a hospital, where he spent eight hours Saturday just to get platelets due to a troubling breakdown in communication between our primary team, the weekend staff and the lab which prepares blood products. Not home, where we'd never sleep because of how much care Dom requires.

The only question is, how long are we going to be here?