Monday, 10 August 2015

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?

6 comments:

  1. Thinking of you lots. The different pace is something to get used to, for sure. Take each minute as it comes. You will be there until you are no longer there. That's the only answer that's helpful. I am wishing for Dom a recovery from the fungal infection. There is hope as long as he is still receiving platelets and treatment of any kind.

    A dose of reality given with great love: one thing I remember with Cal, is that after what was a long time waiting, those last few days came suddenly. It was quite the paradox.

    I say that not to scare you. I say it to encourage you to take as much time as you can enjoying every moment of every hour with Dom, and I know you are committed to that. I believe he is aware, even when sleeping. Talk to him, read to him, tell stories. These are good days to limit visitors in numbers and time. When he overcomes the infection and is better, there will be time to share him with the throngs of people who love him. :-)

    My heart goes out to you as you walk through even more surreal days. You are loved, supported and have the courage and strength to get through this. We are all here to lift you up when it doesn't feel that way.

    Hugs and hugs to all.

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  2. God bless you Dominic, and also your mom and dad. My thoughts and prayers are with you all!!

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  3. Sean, Bless you all. What a courageous battle. I don't mean that, in the way everyone says that. Seriously, Dominic has fought hard, he has stumped doctors, defied the odds for a long time. End of life care is a hard reality, it's needed and about the toughest thing you will have to do on this journey. I sit and cry about this eventually outcome. (a wee piece of me says NO, defy again !) I know you had an unfortunate incident with the platelets, but please remember the health care people didn't want that to happen, they don't want any of this to happen, they have worked so hard, they cry real tears too.
    While the past 2 years now seems so unfair and incomprehensible to me that the cutest little boy ever, has to face this, you have been blessed with a wonderful little smiling boy, he will never be forgotten. He has helped many, and he is loved by many thanks to your blog, your fundraising, your humour and your real words of agony and joy. Your sharing of his story has and will continue to help others too; sadly there are more “Dominic’s” out there searching for a similar situation just to feel sane, you have provided that for them. You and Trish have walked this path with your heads held high and love in your hearts and never has a little boy been so amazing. That is a mirrored reflection of you both. IF and when it is his time to go, take a deep breath and be grateful, as ridiculous as that seems, be grateful. Be grateful for having him. And for getting to love him no matter the path he was given. Dominic came from love, keep this love forever for him and your hearts won’t feel quite so broken. Lean on your family, friends and each other. Seek comfort. We are complete strangers crying with you.

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  4. Inspiring. It's the only word that comes close to describing the way that you and Trish are handling circumstances that almost no one can understand.

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  5. Dom has been through such a fight, and never without his smile. He is in so many people's thoughts and prayers, as he continues in his journey. Such a special boy - so full of love, and so fully loved, everything about his journey has moved a lot of people. How difficult to try and comprehend how it is so short, but he's had a big purpose.
    May your family enjoy the care at the Rotary House, looks beautiful, how grateful to have such a fantastic resource. Like Trish took down the clock in the room, maybe you could get rid of all the clocks! And just forget about time completely. Enjoy every second with that happy boy, and the blessings you so greatly deserve. You and Trish staying strong together has been the greatest example of all. A very special family.

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  6. Praying for Dominic and your family... I am glad you have help at the Rotary Flames House and can get some rest.

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