Montreal Children's Hospital patients share feelings about being alone in private rooms
After moving to private room at new Glen site, Jouri Abdulmaola was so lonely her parents brought her home
Jouri Abdulmaola was full of smiles as she wheeled herself around her family's home in Verdun, pointing out the pet fish she's acquired since we first met last year at the old Montreal Children's Hospital, where she'd been living for four years.
"I think they're sleeping, because my mommy always likes to keep that light off," she said, beaming.
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'Are you coming? Is Daddy coming?'
Jouri, now 7, was part of the big move to the new MUHC superhospital last May, but after having shared a hospital room with other children for most of her life, the transition to a private room at the new Children's Hospital was difficult.
"She just keep calling me.... 'Are you coming? Is Daddy coming? I'm waiting for you.' I felt she was ready to leave," Abdljalil said.
But preparing to move home took time.
Jouri suffered a spinal cord injury in an accident when she was two years old and had been in hospital ever since. She uses a wheelchair, needs a ventilator to help her breathe, and she has special feeding equipment.
Parents got special training
Still, her mother was determined to bring Jouri home.
With two younger children at home, the extra distance to travel to the Glen site was creating challenges, and – more importantly – Jouri no longer had a nurse in her room 24 hours a day as she did at the old Children's hospital.
"That was the biggest issue, we were afraid if one of the tube disconnected ...she would not be able even to talk," Abduljalil said. She acknowledged that alarms do go off to alert the nurses if that happens, but the fear alone of such an event kept her and her husband awake at night.
Jouri's parents got the training required to manage all her highly specialized equipment, and now her mother jokes that she is Jouri's nurse, respiratory therapist and secretary, booking many appointments.
Jouri has her own nurse 12 hours a day, who stays with her overnight, allowing her parents to get some rest.
During the day, Jouri gets out much more than she did when she was living at the hospital. She leaves the house daily to attend a special needs school.
"I'm having fun! I have my own teacher, my own friends, and I get to exercise," Jouri said.
Loïc loves private room
"It's great. It's going really well," said Loïc Bydal, who will soon be 13.
Now that he's approaching adolescence, he enjoys having his own room, said his mother, Anik Pilon.
"Having the television on the wall is perfect for (him) to be able to see the television and play his games," Pilon said.
Loïc's family lives in Gatineau, so they keep an extra mattress on the floor for extended overnight stays.
"It's a beautiful big room, private bathroom, and there's room for us to sleep with him," Pilon said.
Grateful to hospital staff
Although Jouri's parents decided to move her home, they have good memories of the Montreal Children's Hospital.
"The doctors, nurses ... volunteers, pet therapists, music therapists, even housekeepers ... She had a lot of attention," Abduljalil said.
So much attention, in fact, that it was tough for Jouri to adjust to sharing her parents with two younger siblings once she moved home.
But the smile on her face and sparkle in her eyes suggests Jouri has now adjusted to life at home, and her parents are thrilled to have the whole family under the same roof.
"I cannot deny it, it's so good, the hospital – the nurses and the care – but in Jouri's case, she needed more," Abduljalil said.
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