NICU family care committee update

The NICU family care committee is moving ahead and I was really happy to join parents Janis and Lisa for the third meeting, chaired by Kim Dionne and with Diane, Sandy and Sonia attending. We have established objectives and are now organizing the 30 brainstorm items from February into themes. Meetings have been set for the last Thursday afternoon of each month.

Co-chair Kim Dionne, recent recipient of Sickkids's highest family centred care award, the Family Advisory Committee Humanitarian Award, listens to Janis, one of four parents currently serving and engaging this committee.

A core objective is to map family communication into a communication checklist based on work by social worker Sandy Steinwender.

The NICU has moved quickly to put in place a dynamic and committed family centred staff team and we are all excited by this evolution of a new family advisory.

Immersive multi-sensory therapy for the occupational and physical therapists

On Wednesday June 24th, four therapists from Sickkids attended a demonstration of the multi-sensory immersive therapies being produced by Gesturetek. President Ron Kelusky and VP Scott Robinson demonstrated the Ground Effects, IREX/GX and Mobile Therapy Suite and we all participated. Alison, Steph, Lori and Lisa brought expertise from Sickkids physical and occupational therapy roles on the wards and in the Cardiac ICU. It has long been a dream of mine that the Sasha Bella Fund help bring state of the art recreational, diagnostic and clinical tools to the occupational and physical therapists whose work is so crucial for recovery. I love the fact that patients and parents can together in the ICU and on the wards.

Here Scott is demonstrating the IREX system which is first calibrated to the arm length and height of each user and keeps stats on the numbers of successful and unsuccessful efforts.

Here is an example of the mobile therapy suite. The smiles and concentration on this little girl's face is priceless.

A Family’s Perspective of the Vital Importance of Ethics and Patient-Centred Care

First Annual Sue MacRae Lecture On Ethics and Patient-Centred Care
“Making Tough Decisions Together: A Family’s Perspective of the Vital Importance of Ethics and Patient-Centred Care”
Barbara Farlow BEngSci, MBA
Member of Patients for Patient Safety Canada

Wednesday, 11 June 2008, 4:10 – 5:00 pm
University of Toronto Joint Centre for Bioethics
88 College St., Great Hall

Abstract: Following the tragic death of a loved one, a family seeks healing by struggling to define ethics and patient centred care and by attempting to understand why there seemed to be an absence of both in their circumstance. The lecture is an account of a journey of trying to affect improvements in ethics and patient-centred care, especially in situations pertaining to end-of-life and quality-of-life valuations.

Webcast - click on June 11 2008 lecture (my browser had issues loading)

"The decision to accept disability": the life and death of Annie Farlow

The May/June 2008 issue of Paediatrics and Child's Health includes a Commentary by Barbara Farlow about the life and death of her daughter Annie. "The decision to accept disability: One family's perspective" shares how she and her husband prepared for the birth of Annie, embraced her with round the clock care in the ICU, celebrated her return home, her first smile and a visit to Niagara Falls. Having been involved in every decision relating to Annie's birth and life, weeks later when she experienced breathing problems and was brought back in to ICU, neither parent was aware a no-resucitation order was placed on Annie.

"The infant with predicted disabilities lives the most fragile of lives. The fate of our child rested in the hands of the physicians and health care providers. Unilateral treatment decisions and the absence of our input into or awareness of these decisions caused a double tragedy. We were denied both a chance to prolong Annie's life and a plan for her to die a dignified and peaceful death with her loving family by her side."

Barbara Farlow speaks tonight at University of Toronto Joint Centre for Bioethics(see the announcement).

A wonderful walk for Sickkids

Thanks to all who helped make the 2008 walk such a tremendous success. There was a real sense of community and it was wonderful to see family, old friends and new friends pull together to help remember Sasha, grow the fund and help families and staff work better together at Sick Kids Hospital. The totals are not complete however we raised far more than our target. Thank you all from the bottom of our hearts. Check back next week for some of the pictures.

Thanks for helping Sickkids family centred care

Thanks to all the families who raised funds for family centred care at Sickkids Hospital. We very much look forward to seeing you all on Sunday. Thanks also to the many businesses who showed such generosity with silent auction donations, food and music and steeply discounted event equipment.

Less than 36 hours to the walk!

Our day in the park to help Sickkids is almost upon us and after six months and a crazy couple weeks everything appears in order. The volunteers and equipment and permits and donation pickups and signs have been arranged. I am imagining and so enjoying the thought of Cedarvale bowl filled with families. Pamela and the walk committee have done an amazing job and so many families have contributed so much more than we could ever imagine. I am very grateful, relieved and excited.

Happy Birthday Peach

Today would be Sasha's fourth birthday and we ended the night wrapping silent auction items rather than unwrapping peach's birthday gifts. Here is Pamela with a set of remote controlled Air Hogs flying machines from Spinmaster. Wrapping, instead of unwrapping. Thinking of the stars above and our little girl.

Genuine Grief

Last night a friend shared with me that his twin brother had died at age 15. "Two years", he said, "now you will start to know genuine grief." Work with Sickkids helped salve the ache as I quickly flipped from images of loss to presentations, meetings, projects and gratitude. This mental gymnastics now feels like a trick as I accept that once in while I will be washed by tears and sudden heartache for what was, what will never be and a wife and two beautiful daughters in the present.