My Wife's Health Crisis: Fundraiser This Saturday Night
If you are in the area, please come to support her
Here is my wife, Jocelyne:
…she is a vibrant and humble soul who has dedicated her entire adult life to helping others, including, but not limited to:
Providing extensive support to children and adults with special needs
Serving people who are economically disadvantaged, many of whom lack permanent homes
Serving as a lunchtime supervisor for schoolchildren
Serving on the board of, and then working for, an organization that finds job placements for adults with disabilities
Serving the elderly and others that are largely confined to their homes by delivering meals through a program called “Meals on Wheels”
Serving as a board member with the Waterloo-Wellington Down Syndrome Society
Over the years she has invested thousands of volunteer hours into serving others, especially those with special needs and various disabilities. I still have this sticky note that she posted on our door this past summer to remind us where our priorities should be as we exit the house…
She now finds herself facing substantial disability. Like my wife, I also dedicated my life a long time ago to serving others, often through education with the goal of facilitating informed decision-making. So, it is with personal difficulty that I reach out now to humbly request assistance. I am doing this because I love and cherish my wife and want her to be able to live a life in which limitations are as minimized as possible.
Fundraiser To Help Joc
I am extremely grateful that members of a church that I grew up in (and that my parents still attend) are running a fundraiser on behalf of Joc. It is a concert that will include wonderful music and Christmas songs and carols…
It will be this Saturday, December 13th at 7:00 pm at St. Andrew’s Church in Fergus, Ontario, Canada. I know that most readers are located far away. But there are also many who are loco-regional. If you can attend this event, I would love to see you there. Better yet, my wife will be attending, and I would love for her to feel well-supported and loved as this will be her first public appearance since entering a hospital 3.5 months ago.
Why Is There A Fundraiser?
This is my family this past September 1st:
A couple of days prior to this picture my wife and I were jogging together with our dog near our home, unaware that the trajectory of our lives were about to change drastically. About ten minutes after this picture was taken, we drove my oldest son to his residence to begin college. The following day my wife became sick with vomiting and diarrhea; it presented like food poisoning. The next day her condition deteriorated very rapidly and she ultimately lost mobility and developed unbearable pain in the centre of her abdomen. She had to be rushed to our local hospital by ambulance. In the emergency room the focus remained on a potential issue with the gastrointestinal tract due to the clinical signs. However, the problem turned out to be a bacterial infection that had established in her left knee and then went septic, which means the bacteria and the toxin it was producing got disseminated throughout the body via the blood. This is a very dangerous situation known as bacterial sepsis. This resulted in systemic inflammation, known as septic shock, which led to multi-organ failure.
Joc was transferred to an Intensive Care Unit. She had to be be placed into a medically-induced coma and put on a respirator. Joc was told that she would be comatose for a day, possibly two, to give her body a chance to focus on restoring organ functions. However, she ended up being in the coma for thirteen days.
The body’s natural response to multi-organ failure is to divert blood from the extremities to the body core. This was accentuated by drugs that were administered to save organs from catastrophic failure. Consequently, Joc’s limbs became blue and icy cold due to the lack of circulation. Learning of this, our youngest son wanted to sit with his Mom and hold her hand to give her his warmth, as can be seen here…
My wife almost died several times. The closest call came when I received notice one night by phone by the attending physician at 2:30 a.m. I was told to come immediately to the hospital because she was expected to go into cardiac arrest as her blood pressure was plummeting towards a level that would not sustain life.
When I arrived the crash team was surrounding her bed. In a previous incident, Joc had been medically paralyzed and placed on her belly, in a last-ditch effort to get sufficient oxygen distributed to her tissues. This time, the physician called for her to be flipped onto her back so that the bed could be dropped to the ground and manual chest compressions attempted when her heart monitor flat-lined. But, after being flipped over, instead of flat-lining, her blood pressure ever-so-slowly started to rise. She had likely been seconds from death in that moment.
It was an emotional roller-coaster that I will never forget. I and other family members thought we had said my final goodbye to my wife on several occasions. Joc was in the intensive care unit in critical life-threatening condition for the entire month of September. Ultimately, she pulled through and her life is nothing short of a miracle and a testament to her faith and God-given resilience.
However, the insufficient blood flow to her limbs proved to be too extreme for too long for them to survive. She endured two sets of progressive amputations to maximize what could be saved. Ultimately, she had to have large portions of all four limbs removed; both arms were amputated just below the elbows, the right leg just above the knee and the left leg just below the knee. This is Joc in an electric wheelchair in the specialized rehabilitation facility in Toronto that she currently resides in…
You can see her using the stump on her right arm to control a custom-adapted joystick. This has given her independence in terms of mobility within the hospital. Joc spent a second month in Guelph General Hospital for her medical recovery and has now been in the rehabilitation hospital for 1.5 months. She is being discharged home this Friday (yes, in two days).
Joc will be coming home with no prostheses, which presents challenges for daily living. But it is so she can work as an outpatient with a wonderful team that runs a clinic within our own city. This team is willing to accept the risks of working with Joc’s particularly challenging case in an effort to help her reach her personal goal of walking again and gaining as much independence as possible.
Because she will be home on Friday, she will be able to attend Saturday’s fundraising concert. She has felt isolated and lonely being geographically separated from her family and friends. It has been hard to for me to function as the sole caregiver for our youngest son with special needs while simultaneously traveling along one of Canada’s most stressful driving routes several times a week to see my wife. So, I am looking forward to having my family together again. I am also looking forward to taking Joc to the fundraiser in Fergus this Saturday where I am hoping that she can bear witness to the kind of support that she has.
What Are The Costs
We have come to learn that the costs associated with getting a quadruple amputee back to the point of reasonable independence are extremely high. Thankfully, there are a variety funding supports that are in place, which include things like Ontario’s Assistive Devices Program, The War Amps (where Joc is now registered as an adult amputee), my work insurance, etc. Although these will provide substantial financial assistance, the costs for which my wife and I will be responsible are estimated to be a minimum of $150,000 over the next little while, with that potentially going much higher depending on what kinds of prosthetics that Joc may be able to graduate to and what new technologies may emerge.
Here are examples of some costs that we are facing…
…the commode on the upper left cost us $850. The compact electric wheelchair arrives tomorrow and will cost us $3,999 out-of-pocket. We will need a porch lift that will likely cost somewhere around $15,000. The stairlift that we will need to safely get my wife upstairs where our bedroom and bathroom are will likely cost in the ballpark of $20,000.
To try to get Joc safely walking again, her prosthetic team is going to build her very short legs, called ‘stubbies’, much like what you can see on the gentleman shown in the picture above. She will walk on her left knee (with built-up support underneath) and a short prosthesis with what is called a “sidekick'“ for a foot (shown on the bottom left in the collage above). That way, if Joc falls, she won’t have far to fall. The goal is to avoid catastrophic falls, for which Joc is at risk without forearms to break any fall.
Should Joc be successful in walking this way, she will get her legs built up an inch at a time. Depending on progress, she may be able to eventually get full-length leg prostheses.
For her upper limbs, she will start with what is known as a Koalaa device. She could then potentially graduate to intermediate prostheses like arms with hooks that are opened and closed via cables using movements through a shoulder harness. Ultimately, she might be able to use what are known as myoelectric arms like the one shown on the bottom right. These have sensors that can detect muscle movement on the upper forearms and translate these signals to open and close the fingers. These myoelectric devices can easily cost $100,000 each.
There also exist options for specialized prosthesis to support specific activities, like swimming as one example.
There will also be in-home support services, including things like physiotherapy tailored to Joc’s specific goals within the house, and personal support workers.
Fundraising
To help my wife and I, good friends of ours started two public fundraisers…
I can’t begin to express my gratitude for the massive support that has poured in through these fundraisers, in addition to the wonderful generosity of so many people that have supported us in so many other ways (meals, giving our son socialization opportunities, etc.). Joc and I have been humbled and blessed by the support.
Joc’s Future
Joc has, on average, maintained a remarkably positive attitude throughout this horrific ordeal. She has incredible resilience and determination. We have navigated this exceptionally difficult time by remaining anchored to the cross of our Lord and Saviour, Jesus Christ. Times like this make it challenging to perceive a greater purpose, but Joc and I have faith that God’s plan is superior to to our self-made ones, and that he can weave this tragedy in a way that ultimately yields net good. Joc looks forward to discovering her new purpose in life.
For those who cannot attend this Saturday’s event to meet with Joc, we would cherish your prayers for our family as we spend the next several months establishing a new normal. And always remind yourself to “Help someone today :)”