There are many medically fragile children in our community. Our son Jason was one of them after contracting bacterial meningitis after a vaccination at 6 months of age. Jason was misdiagnosed several times in a 24 hour period.
We were told that Jason would pass away within 24 hours of us arriving at hospital. He proved everyone wrong and went on to spend 77 days in the hospital. As a result of the meningitis, Jason had severe brain damage. He would never be able to walk or talk, was fed by feeding tube and had a severe seizure disorder.He could not even maintain his own sodium balance. Jason required 24 hour care and was on countless medications just to help him through the day.
During Jason’s short 8 years of life, he endured countless hospital admissions, many surgeries, was placed on life support on numerous occasions and had endless doctor visits. In 2007 Jason had two cardiac arrests and after his discharge from hospital he went on to have what would be the best year of his life since he became ill. Subsequenty Jason died on February 24, 2009 at the young age of 8. A life taken too soon for sure.
During his 8 years, Jason had many daily challenges that affected the family as a whole. He, the oldest of 3 siblings, would have to travel with his suction pump, feeding equipment and sometimes his oxygen tank. We were also always concerned about him having a seizure. A simple trip to the grocery store or even going for a walk became a challenge for us. Jason was hyper-sensitive to everything including the weather. It would have to be absolutely perfect outside for him to be able to go out for any period of time. If it was too hot or too cold, or even too windy our outings would have to be cancelled.
Due to Jason’s medications and severe brain damage, he would sometimes sleep the entire day away and be awake all night, he had no sense of night or day. This was difficult for us to deal with as we were trying to keep our other children on their normal sleep patterns. This was also impacting our work as we stayed up with Jason night after night and then had to go to work exhausted and drained in the morning.
Fortunately, we qualified for CCAC/VON nursing a few years in to Jason’s illness. Jason was at a high risk to aspirate and required medications throughout the night. We could no longer stay up with him night after night and go to work in the morning. The lack of sleep had began to take it’s toll. CCAC/VON helped us to get some much needed sleep.
We first heard of CPRI (Child and Parent Resource Institute) Pratten 1 and Kids Country Club (Parents of Technologically Dependent Children) at one of Jason’s many hospital admissions. We were reluctant at first about having Jason away from us for a couple of days but we were so emotionally and physically drained that we decided to give it a try. It was probably the best decision we had made for Jason and the rest of our family. Both facilities are involved with children who have become medically fragile or technologically dependent as a result of an accident, illness or genetic condition. They provide the care that is usually provided by hospitals or institutions. They also provide a nurturing, fun and safe environment for our children. They take the children for walks, have story time, do hand on hand crafts and much more. This gives families a chance to spend some quality time with their other children or get some much needed rest. These facilities have RNs, RPNs, DSWs and PSWs. The nursing staff administer all the medications while the rest of the staff give therapies needed to keep your child safe and healthy while they are away from home. The staff take it upon themselves to get to know the children so the can meet all of their needs. Without these 2 amazing facilities involved in Jason’s care, our lives would have been a lot more stressful than it already was. They also provided friendship and support during our most difficult moments.
Jason also attended St.George’s Public School where he was involved with the Developmental Centre Program. There are 2 primary developmental classes and 2 junior developmental classes. We never dreamed that Jason would ever be able to go to school but with amazing teachers, Nurse, Physiotherapist, Occupational Therapist and many Educational Assistants, Jason had a many fun filled days at school. The programs developed individual plans for each student which allowed them to reach their maximum potential. Program areas include self help, communication, literacy, numeracy, physical, behavior, and social and emotional integration.
Over the years, these organizations have all become a huge part of our lives. It has now been 2 years since Jason passed away and we are still in contact with the many people who have helped and guided us along our difficult journey. We consider them all to be friends.
My advice to any family who may find themselves in a similar situation is giving your community resources a chance. You will not be disappointed, your child and family deserve it. Also, find your child a great physician (thanks Dr.McNeill) who knows your child’s needs. With all of these resources you will be able to make it through your difficult journey. There is help right there in your own community for your medically fragile and technologically dependent child.
By Lisa Riddell