Our Journey with Kai

I am a grandmother who, along with my husband, adopted one of our grandchildren because our daughter was unable to care for him.  Kai, passed away due to a life long battle with complications arising due to his extreme dystonic/spastic cerebral palsy.  Kai was asphyxiated during a delivery that went sideways, as a result he was airlifted from our town hospital to BC Children's Hospital on life support.  After 3 weeks he was sent back to our local hospital for palliative care.  However, we as a family determined that he would live life at home as "normally" as possible. Kai proceeded to be an amazing fighter and proved a number of markers set by some specialists to be wrong, however he did not get past the 12 year mark set by one of the more optimistic specialist.  At BCCH we were told at a meeting of PICU specialists and family that Kai would not live, one specialist went so far as to say that if he did live "he will be a vegetable in his crib" and would not know us. Yes, Kai was unable to walk, eat (he had to be tube fed), talk, hygiene himself or use his hands very effectively.  He did however speak volumes with his eyes and his face, he had recently started to learn to use an eye gaze computer with a goal toward communication -  he was by no means  "a vegetable in his crib". He knew everyone (and animals) around him; he had favourite people and animals, as well he had people he did not like and let them and us know that.  Thus began our journey.  Kai fought many battles for his life, twice for tube feeding surgeries, 3 times for a medical implant to control his spasticity, two hip reconstruction surgical procedures, two repair of broken limbs due to brittle bones, and the worst, a two day scoliosis surgical procedure. Not to mention countless lung infections and pneumonias with colonized bacterial infections.  It was a brutal journey on a little boy who, despite it all,  continued to live joyously and love deeply until yet another lung infection and failing lung function caused him to pass away shortly after his 12th birthday.

Kai's journey was a long one made up of short and long term recurring hospital stays, intermingled with joyous times at home and at school. For us,  it combined with a roller coaster of emotional ups and downs that were very stressful to say the least.  We could not in any way have survived this without the support of our family and especially with the help of the staff at Canuck Place Children's Hospice in Vancouver. We were approached by one of their teams during one of Kai's stays at BCCH. At first we were resistant to them as we thought they operated as strictly palliative care and at that time Kai was not in immediate danger. However, we came to realize that they also provide support to families who are caring for children with a life threatening condition, and Kai indeed fit that category.  We spent many visits and stays at Canuck Place over the next 4 years for respite, symptom management and support. So when Kai was yet again admitted to BCCH ICU with a lung issue and we were told by the doctors that "Kai will not be going home this time", we then opted to transfer Kai over to Canuck Place for his final passing.  The care team there took over his medical care allowing us to be able to spend our last week with Kai being able to focus 100% of our time with him, talking to him, reading him books, showing him photos of school friends and activities he had participated in, just being with him, able to hold him, love him and to say our goodbyes. They acknowledged and respected our differing values, our opinions and suggestions. Family and close friends were allowed to come in as a group and be part of a holistic ceremony of goodbye; friends were able to visit as they were able, there were no "visiting" hours. In these ways Canuck Place supported and allowed us to say goodbye in our own special way to a very special child.  

We have also been able  to contact, attend commemorative functions and meet with their support staff for continued grief support, because even though "expected",  we were still not ready for this tremendous loss. We will be forever grateful to Canuck Place for the supportive loving care they provided over the years and during Kai's passing, they truly are marvelous. They helped us cope through his immediate passing and continue to help us deal with the loss of our amazing Kai.

We also cannot stress enough that these services should be available to any child, anywhere in the province, to be able to access. Ideally a few more of these centres throughout our province should be opened so that families can be closer to home.

Not only do I feel strongly about child palliative care, but I also feel that the type of care provided by Canuck Place could be of great benefit to adults and their families.