Tag Archives: caregivers

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Marcy White is a writer and special needs advocate.

 

In just one year, my son, Jacob, was put on Bi-Pap in the PICU on four separate occasions. Only a respiratory therapist was allowed to put the device on him or make adjustments when he was in the hospital. On the first occasion, he was not allowed on any other hospital unit while dependent on Bi-Pap. On subsequent occasions, he could transfer to the General Pediatrics unit as long as his Bi-Pap needs remained stable but, should his Bi-Pap needs increase, he would be transferred back to the PICU. ...continue reading

Denis Daneman is Professor and Chair Emeritus in the Department of Paediatrics at the University of Toronto, and Paediatrician-in-Chief Emeritus at the Hospital for Sick Children in Toronto

 

Here’s a strong recommendation for all paediatricians and paediatricians-in-training: if you are going to read only one book in 2018, seriously consider Ghost Boy: The miraculous escape of a misdiagnosed boy trapped inside his own body, the autobiography of Martin Pistorius, co-written with Megan Lloyd Davies. The book was given to me by a colleague aware of my bibliophilia, my South African roots and my advocacy for child health: “Read this!” she said, simply and forcefully. I obeyed, picking it up a couple of days later. I could not put it down until I’d read it cover to cover.

The story is pretty simple: a 12 year old, previously well boy in South Africa, develops an undiagnosed neurological illness, which leaves him mute and quadriplegic ...continue reading