http://www.montrealgazette.com/life/Lessons+learned+childrens+hospitals/5486
040/story.html




Montreal parents share lessons they learned while caring for their ill
children in hospitals
 
 
 


 
 
By Aaron Derfel, GAZETTE health reporterOctober 1, 2011
 
 
 












0
 


 
 
.Story
 .Photos ( 1 )
 
 
 








  


"When I first walked into the Montreal Children's with my daughter, I was
terrified of hospitals, terrified of needles and terrified of doctors," says
Robert Bloom, who with his wife, Alyssa Scheim, had to rush daughter Gabi to
the Montreal Children's Hospital eight days after she was born.
 
Photograph by: Allen McInnis, THE GAZETTE
 

MONTREAL - Eight days after Robert Bloom's daughter was born, he and his
wife grew worried when they noticed that their baby girl wasn't gaining any
weight.
 
They rushed Gabi to the Montreal Children's Hospital, and to their dismay,
she ended up spending nearly a month in the intensive-care unit undergoing a
series of tests and being fed intravenously.
 
The doctors discovered that Gabi was suffering from a rare form of "gastric
malabsorption" as well as severe allergies. She was unable to metabolize
vitamins and iron.
 
Doctors surgically implanted Gabi with a feeding tube, and now 26 months
later, she still cannot eat on her own.
 
"When I first walked into the Montreal Children's with my daughter, I was
terrified of hospitals, terrified of needles and terrified of doctors,"
Bloom recalled.
 
He was also unprepared for the nearly 50 medical specialists he had to see
for his daughter, as well as all the procedures and medications she had to
take.
 
Today, Gabi is no longer an in-patient of the Montreal Children's, but Bloom
wants to share his story and the lessons he's learned with other parents of
young children who fall ill.
 
"There are secrets that you only can find out after you live in the hospital
for a while with your child," Bloom explained. "We thought it would be very
educational to share these secrets ahead of time to parents."
 
On Sunday at the Montreal Children's, Bloom and other parents will be
hosting a seminar entitled, Navigating the health-care system: Learn your
rights and learn how to communicate effectively.
 
Much attention has been focused on the growing phenomenon of patient
navigators in the adult health network, but Bloom argued that medical
advocacy is equally important, if not more so, in the pediatric sector.
 
"Nurses are overworked and it's often hard for them to know why a child is
crying because the child can't communicate like an adult can," Bloom said.
 
Six months ago, the Montreal Children's created a new part-time position,
the Patient- and Family Care-Centred Co-ordinator, whose job is to make the
hospital more attuned to the special needs of its in-patients.
 
"There are some patients who actually live in the hospital, and it just
makes sense to have the care centred around the patient and the family,"
said Imma Gidaro, the coordinator.
 
One of Gidaro's first accomplishments was to persuade all hospital staff -
including maintenance - to knock on the door of a patient's room before
entering, smile and introduce themselves rather than barge in, as some were
inclined to do.
 
Today, Gabi is a rambunctious 26-month-old talking up a storm and opening
the fridge door whenever she can. Bloom said he's hopeful that his daughter
will one day be taken off her feeding tube.
 
In preparation for Sunday's seminar, Bloom has put together a list of 15
tips. Among them: 

When you take a break from your child's bedside, leave a note to let people
know when you will be back.
 
If you are sleeping at your child's bedside, be up and ready for the
doctor's morning visit, which can be as early as 7 a.m.
 
Keep a paper and pen handy to write down people's names and their role in
your child's care.
 
The patient navigation seminar will be held on Sunday at 10 a.m. in the
Montreal Children's amphitheatre. Admission is free. For more information,
call the hospital at 514-412-4400.
 
[log in to unmask]
 
C Copyright (c) The Montreal Gazette


Read more:
http://www.montrealgazette.com/life/Montreal+parents+share+lessons+they+lear
ned+while+caring+their+children+hospitals/5486040/story.html#ixzz1Zd1pSpBE

-----------------------

To change your mail settings or leave the C-PALSY list, go here:

http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy