Life or death at 11 years old

Today is National Siblings Day. This is a moving and illuminating piece from Jamie Trossman, 12 (right), about a time a year ago when her brother Jacob, 14 (centre), went into respiratory distress. Jamie’s twin sister Sierra is on the left.

By Jamie Trossman

I was sitting at the kitchen table, reviewing my homework, when someone called from the family room.

“Jamie?”

“Yes?”

“Can you come here for a second?”

“Coming.”

I left my semi-finished homework on the table and went to the family room. My 14-year-old brother, Jacob, was lying on a mattress, accompanied by a nurse called Dawn.

“I can’t tell what he’s trying to say,” said Dawn. “Can you help me again?”

I nodded and knelt beside Jacob.

“Jake, is there something you want to say, ask or do?” He blinked once, signaling “yes.”

“Okay, then. Is there something you want to say?”

I gave him five seconds to blink, and he didn’t, meaning “no.”

Painstakingly, with these yes and no questions, I deciphered that he wanted to go to the park with me. So we did.

When we returned, I lay down eagerly on my bed to read Harry Potter for the fifth time. Mid-sentence, just as Umbridge was being dragged away by centaurs, I heard Dawn call me.

She was stuck, again, trying to figure out what Jacob was saying. After we realized that he was uncomfortable, and wanted to be turned, I went back to my book.

But before too long I heard “Jamie?” It was Dawn again. I appeared in Jacob’s bedroom.

“Jacob, is there something you want to say, ask or…”

Dawn cut me off.

“Jamie, could you call your mom on my phone, please?”

She handed me a blue cellphone. I dialed my mother’s phone number. Jake let out a muffled shout. Dawn was fumbling with the BiPap machine, a machine that helps my big brother breathe. When my mom picked up, Dawn told me to say that Jacob was in respiratory distress and oxygen and suctioning weren’t making a difference. Now my heart was racing: it sounded serious. My mom told me that she’ll be right home and she’ll get my sister Sierra to hurry up leaving gymnastics. When I hung up the phone, I noticed that Jacob’s face was becoming redder and redder.

“Jamie, do you see that greenish plug?”

I searched frantically for a plug fitting that description. Once I located it, Dawn instructed me to plug it into the wall and I obeyed. Just then, Jacob let out a cry of pain. I felt his fear and helplessness, like a sharp knife was slashing these emotions deeper and deeper into my flesh, making them stronger and stronger.

“On the BiPap machine,” Dawn told me, her voice beginning to shake, “there is a small black dial. Move it over five squares to the right.” I moved the dial and as I did, my fear blossomed. Why was Dawn’s voice trembling? She shouldn’t be so scared, she’s a nurse, I thought. I’m supposed to be able to count on her to know what to do. She must have done this before. When the nurse panics, everyone panics!

“Now, hold the mask to his face, that’s it.”

I bent over him and whispered encouragingly to Jacob, telling him it would be all right. Yet I could hardly convince myself. I was drowning in fear. It was no use, as he could not hear me over the shrill beeps from his machine telling us the obvious: he was not okay.

A horrible thought entered my mind, one I had never voiced out loud, not even to myself: What if Jacob doesn’t survive? He’s probably already dying, I thought.

I looked up to see my mom standing over me. She turned on a bubble machine that emitted a very peaceful, calm sound of rushing water. We continued to listen to the water, when it wasn’t drowned out by the beeps of the machine.

After about half an hour, my dad rushed in. I kept my sweaty hand clasped over the oxygen mask and tried to calm my brother down. My parents and Dawn tried multiple techniques and oxygen machines. Then my mom spoke.

“We can’t do this on our own. We need help.”

I had no clue what she was talking about. Dawn, Dad and I were helping. What else could we do?

“911?” croaked my dad. My mom nodded, and my wet eyes widened. A voice came from the hallway.

“I don’t want to be here when the paramedics come,” said my sister Sierra. Her eyes were swollen and swimming in tears, just like mine.

My parents looked at each other.

“You could go to Ashley’s house,” my dad said slowly, “They’ll take care of you.”

“I want to go with you,” I said to Sierra. I didn’t want to see what happened.

In my mind, I pictured scary looking people in white coats or uniforms taking my brother out on a stretcher, talking to each other in medical jargon that would sound like nonsense words to me, and pressing intimidating and scary-looking tools onto Jacob.

I didn’t want Jacob to go back to the hospital. It felt like he just got back! Jacob spent pretty much all of last year at SickKids. Jake is not a normal boy: he was diagnosed with Pelizaeus-Merzbacher disease (PMD), a disease which prevents him from walking, talking and eating, not to mention his serious breathing issues.

Sierra pulled a sweatshirt over her gym-suit and we put on our shoes. We called Ashley’s parents to ask if we could come over, and explained what was happening. Then Sierra and I ran down the street to her house and knocked on the door. Soon it creaked open and we entered.

“Ash isn’t here,” said her mom. ”She’s at a basketball game.”

We nodded. She led us into the kitchen and we sat at the table. We sat there for several long moments, as Ashley’s mom put her little brother, Jack, to bed. We sat in an icy silence, hoping that everything was fine at home.

After about five minutes I looked over at Sierra. She was staring at her thumbs as if they were a mildly interesting TV show. Sensing my eyes on her, she focused even harder on her sweaty fingers. When she realized she couldn’t avoid me, she looked up at me.

“So,” I said awkwardly, “So.”

“So,” she repeated. Her voice was hoarse from lack of use. “So so so.”

“How did you find out?” I asked.

She glared at me as if I was the stupidest person alive.

“I came out of gym.”

I rolled my eyes. “Okay…And?”

“I came out laughing and talking to Maya.” Sierra burst into speech, every syllable suggesting annoyance.

“Julia had finally flipped for us on tumble track. So Maya and I were recounting what happened, it was funny and all.” She looked disgusted at this thought. How could something be funny when Jake was at home in trouble? “And she was talking to me,” she continued. “We were getting dressed, then Mum came in, and said you called her and we had to go, so we left. I felt bad because I left Maya mid-sentence. She must be mad!”

Ugh, our brother is … well, sick and all she cares about is that her friend is mad at her? Her friend is mad at her because she had to go help him? People’s minds work so weirdly. Someone needs to prioritize.

Ashley’s mom came down the stairs and joined us.

“How are you doing?” she asked sensitively.

“We’ve been better,” I grumbled. Then, interrupting the silence, there was a knock on the door. We all leaped to our feet and raced there. Ashley’s mom answered. It was my mom, standing in the doorway. Her face was unreadable. My heart stopped.

“What happened?” gasped Sierra.

“He’s okay,” she said.

I let out a sigh of relief.

“Does he have to go to the hospital?” My voice was trembling.

“No.” She smiled.

I felt like I could fly. The weight in my stomach was lifted. I gave a shaky laugh and left with my mother.

I was so glad that I was there to help Dawn with the oxygen. I hate to think of what would have happened if I wasn’t home. Dawn would not have had enough arms to do everything at once.

As we walked home, my house seemed a lot closer to Ashley’s than it had when I was running for my life to get there. As my house came into view, I saw a big, white ambulance and a stretcher in the driveway. The stretcher was empty. The paramedics were petting Felix, my dog, and taking selfies with him. They didn’t seem scary after all.

All is fine. For now.

Originally published on Bloom.

I Am Not Alone

Marcy White with her son Jacob Trossman and their dog Felix on Tuesday April 5, 2016. Jacob has Pelizacus-Merzbacher disease which is a progressive  disease that leaves him wheelchair bound, he doesn't speak and can't feed himself and relies on 24-hour nursing care.  Craig Robertson/Toronto Sun/Postmedia Network

Children like my son are at risk and nobody is willing to help. We need change immediately, lives are literally at stake. Young, innocent and fragile lives.

In the midst of caring for my severely disabled teenager, I thought I was the only one struggling with incompetent nursing care at home. I didn’t realize that having to wake a slumbering nurse out of a drug-induced sleep at 3 o’clock on a Saturday afternoon or receiving a panicked telephone call from a nurse explaining that my child “somehow” toppled out of his bed onto the hard floor because she forgot to raise the side-rails was an experience that other parents of special needs children shared.

I am not alone.

Steve (all names have been changed) walked into his medically fragile daughter’s bedroom at 2am only to be confronted with a horrific sight: the nurse fast asleep on the floor, holding onto one of the legs of the baby’s crib, a water bottle filled with an alcoholic beverage by her side.

As Martha answered her phone, she was floored when the school principal informed her that the nurse who was assigned to care for Martha’s child was fast asleep, drunk, on a sofa in the kindergarten classroom.

Samantha had a nurse taking care of her child who repeatedly arrived for a Saturday morning shift hung over and openly discussed her partying adventures from the previous night.

Several parents recounted experiences where they had nurses show up for a day shift right after the nurse finished an overnight shift somewhere else. Or nurses showed up for a night shift following a full day shift.

An infant girl fell off the changing table while under the care of a nurse. How did it happen? The nurse walked away from the child on the table. The baby was injured, required stitches and the nursing agency blamed the parents for not having the changing pad bolted to the table!

Almost everyone who receives nursing at home can recount instances where nurses canceled at the last minute, nurses refused to work certain hours and agencies were unable to find nurses to fill shifts. We all have stories about hours that were allocated to us but were lost because there was nobody available to staff the shift.

But life-threatening mistakes due to incompetence or poor training are something different. 

Every single family I’ve met who receives some type of home-care support has at least a few incidents about nurses who were sleeping on the job. One of the more terrifying stories is the one about the nurse who, against orders and safety protocols, left a severely disabled child’s room to lie on a sofa in another room on the opposite side of the house because the alarms of the patient’s life-sustaining machines were too loud for the nurse to sleep. During a shift that specified the nurse to be awake and constantly watching the patient, said nurse was in such a deep sleep that not only did the caregiver not hear the mother’s yelling for help, calling for neighbours backup or the resuscitation efforts of her child after the child had a life-threatening seizure. Furthermore, the nurse did not awaken when neighbours summoned to assist in the crisis arrived, nor when the mom and others took photos of the still-sleeping nurse. The agency gave the nurse two weeks paid vacation and reassigned her to a different patient. The mother has never again slept through a night due to the traumatic memory of this nurse’s life-threatening lack of care.

Over the past year I have written several articles about the incompetence that exists within the home-care nursing system in Ontario and the dangerous situations my medically fragile son has faced as a result of this ineptitude.

Nobody was ever held accountable for the many errors we witnessed. In our case consequences were never discussed, much less enforced. Nurses who endangered my son’s life were not retrained or disciplined, they were simply reassigned to other, less outspoken, families.

As I began to speak out, people were supportive and offered words of empathy. However, the support did not come from those in any position to effect change. There was a lot of “I’m sorry you are dealing with this” and ” wow, I didn’t realize it was that bad” and even “I wish there was something I could do to help”.

But something else started happening – I began receiving emails from people sharing similar stories of danger and helplessness.

When one person speaks out or complains, it’s easy for an onlooker to assume that this is an isolated occurrence, the family is too demanding or the stories are exaggerated. But when the same experiences occur in homes across the province, it’s time for a thorough investigation, accountability and consequences. The experiences I shared here are only a fraction of the horrors that take place daily in homes and schools with innocent kids who are dependent on skilled nurses for their ongoing survival. There are a slew of families who are too afraid to complain as they fear losing the services they currently receive. The worry is real – my son lost services after I began sharing my experiences.

The College of Nurses of Ontario (CNO) must play a greater role in ensuring that nurses are competent. They need to create an easily accessible route to report serious medical errors. Parents like me do not have the luxury of time and excess energy to navigate the current bureaucracy. Complaints to the CNO currently fall on deaf ears and follow-up is mostly non-existent. The nursing agencies and the Community Care Access Centre (CCAC) have clearly proven that they are not willing to do this.

The Patient’s First Act, the bill that will fold the CCACs into the Local Health Integration Networks (LHIN) is not the solution. This change will not create responsibility or instill consequences. It will not protect unsuspecting patients from incompetent care. The new legislation fails to address the crux of the problem – poor oversight of nursing skills within the community and a lack of accountability for the grievous errors.

The Minister of Health and the CEO of pediatric hospitals in Ontario need to unite with families like mine immediately and figure out a way for our kids to receive the exact same quality of care that they receive when they are hospitalized. We need to redefine what home nursing looks like for medically complex children and extend the care provided by the hospital into our homes.

We cannot wait until more mistakes occur. The lives of fragile children are at stake.

Note: Over the course of my son’s 14+ years of daily nursing, he has had, and continues to have, some wonderful, caring and skilled nurses. The purpose of this article is to address the abundance of incompetent people who hold a valid Registered Nursing license in Ontario.

Lack of Accountability in the Healthcare System

accountability

I spoke out about the lack of accountability in the healthcare system in Ontario and got burned.

According to the Community Care Access Centre (CCAC) in Ontario, I have “the right to express concerns and recommend changes without fear of reprisals, interference, coercion or discrimination”. That is a lie.

When my 14 year old son, Jacob, was on the receiving end of incompetent and inconsistent nursing care, I spoke out. Loudly and repeatedly.

I began by discussing my concerns with the nursing agency and Jacob’s CCAC case manager, the person responsible for overseeing the agency and ensuring they fulfill their contractual obligations. When that failed to resolve the multiple safety issues, I escalated my discussion to the senior management of both the nursing agency and the CCAC.

Nobody at either organization denied there were problems with Jacob’s nursing care. For example, no one disputed that Jacob’s nurse should not have been in a drug-induced sleep during a day shift. I wasn’t rebuked for expressing concern about a nurse’s skill when she allowed my son to fall out of his bed onto the hard floor. And they didn’t think I was overreacting when a nurse tried feeding him food orally, or when another nurse tried giving him medication in his mouth, instead of through the feeding tube in his stomach. Although they never apologized for not filling a nursing shift, the agency and CCAC did acknowledge that shifts were missed because they were unable to find a nurse to care for my medically fragile son; however, as I later learned, the missed shifts and many medical errors were seldom recorded in his file.

After multiple weeks of inaction, the senior management team of the CCAC began chairing a weekly conference call with me and the nursing agency in order to address the problems and maintain a consistent schedule of competent nurses for Jacob. The calls proved ineffective – instead of the service providers presenting supportive strategies, I was forced to lead the calls by highlighting the issues and requesting plans to fix the problems. The agency executives seemed ill-prepared for the calls, and failed to know how to respond. Repeated claims that their administrator was “trying his best” quickly grew stale. Their excuses did nothing to ensure Jacob’s safety at the hands of their employees. Despite factual documentation supporting my allegations, the agency and the CCAC representatives united in stymieing any long term remedies, or legitimately working towards a real plan. I was fed a bunch of platitudes, including they were trying hard, they don’t have any more nurses and I needed to be patient. An ironic excuse for why they were having so many problems was “the system isn’t set up to provide 24-hour nursing care”. This startling assertion came from executives whose primary business function is to supply nurses and other home care services in the community!

My son was subject to dangerous and sporadic care, I was the bad-guy and “the system” was at fault.

Jacob has always been dependent on nurses, but it has only been in the last few years that his medical needs have intensified and he requires around the clock care. With over a decade of experience, I was not a stranger to the vigilance I had to employ to maintain a safe level of home health care, but the people responsible for ensuring the care were accomplishing the exact opposite: they were so used to blaming others that they could not find a way to help Jacob. It was a case of learned helplessness at its finest. The actions of the agency and the CCAC created stress and hardship for our family and we were already drowning in the responsibilities and challenges involved in caring for a very sick child.

I refused to concede that we had the best nursing care the province could provide because it wasn’t enough to keep my son safe. Jacob deserved better and I wasn’t going to stop until he had the competent and consistent care that he required.

After more than four months of weekly conference calls proved useless, the CCAC folks were exasperated by the relentless thorn in the their sides that was me. The CCAC hired an outside mediator to chair a couple of face-to-face meetings with all parties ostensibly to assist our group in creating a sustainable plan for Jacob’s care.

Nobody contested that Jacob required 24-hour nursing care and everyone agreed that Jacob’s needs were complex and unpredictable.

The meeting began with the mediator placing a 5×7 framed photo of Jacob on the table, in full view of all parties to ensure that everyone remembered we were working towards a comprehensive care plan for a real boy with thoughts, feelings and rights. There was palpable tension in the room, but nearly two hours later we ended on a friendly note. We even closed the meeting with hugs and handshakes, to-do lists and plans to resolve the situation quickly.

At the second, and final, meeting it was instantly apparent that the action items from the first meeting had been completely ignored and the follow-up items were not completed as discussed.

Once again, I was hit by the inexcusable wrong that there is no process in existence to hold the CCAC and nursing agency accountable for their unfulfilled promises and lies.

After exhausting all the traditional avenues to resolve the problems, I approached the media.

Together with a couple of other beaten down, exhausted and desperate mothers, we shared our stories of incompetence and mistreatment by both the CCAC and nursing agencies, with the hopes of provoking change and instilling accountability. I knew I was not the only one facing the arrogance and bullying of the CCAC and nursing agencies. Global News and The Toronto Sun newspaper clearly exposed this fact.

The media coverage strategy backfired. Jacob and I were punished.

The nursing agency that was responsible for sending incompetent nurses fired us even though they had supplied nurses we liked who enjoyed working with Jacob and my family. Instead of forcing the nursing agency to ensure they hire skilled and well-trained employees, the CCAC allowed the agency to cut off care. Then, almost as a bonus, the CCAC awarded them more contracts to replace the nursing hours the agency gave up when they refused to service us.

At the same time, the Community Care Access Centre decided that they had enough of me.

Without any warning, the Senior Director at the CCAC sent me a letter in which she explained that she was scaling back the management of the nursing hours (not withdrawing nursing care) – instead of being responsible for ensuring that all the shifts were filled, it would now be my sole responsibility to ensure that we had nurses for all but a fraction of the hours. If the shifts were unfilled, they were not to be contacted. The reason they gave: Jacob hadn’t died when they expected he would.

The unremitting anxiety of dealing with unskilled nurses and inept managers paled in comparison to the wallop of those words. But instead of accepting this bombshell, I didn’t retreat. When you’re the mother of a chronically ill child, you have no choice but to fight. I would not cower in a proverbial corner and let the CCAC steamroll me into submission. My son’s life was at risk.

I approached the Minister of Health whose office was sympathetic to our situation and tried to intervene. But the CCAC was no match for the Minister’s office. Like a shamed dog with its tail between its legs, the Minister’s office backed away. They explained to me that their office did not have the authority to tell the CCAC how to operate.

It’s been over a year that Jacob was discharged from a 236-day hospitalization. He is still without competent, consistent and sustainable nursing care. We have a new nursing agency who is extremely devoted to finding solid nurses – but it is not enough.

Both the CCAC and the original nursing agency must be held accountable for the recklessness with which they have been operating at the expense of my son’s well-being.

Currently, I am working with the brand-new Patient Ombusdman and the Child and Youth Advocate who are united in helping me ensure that Jacob gets the care he needs.

I am not backing down, I will not be intimidated. Not when my son’s life is at stake.

Before and After

 

before and after

In my mind, my life as a mom is divided into two: before and after. The “before” is prior to Jacob getting sick and spending 236 days in the hospital. The “after” began when he was discharged from the hospital and my life, and that of my family, changed dramatically. In reality, the change began on January 23, 2015, the day I frantically drove my son to the hospital when he struggled to breathe, his face an unnatural shade of blue-grey and the sounds coming out of his throat signaled that he was fighting to keep his airway open.

My “before” was the life I adapted to following Jacob’s birth in 2002 and his diagnosis of Pelizaeus-Merzbacher disease (PMD), the neurodegenerative genetic disorder that affects all aspects of his life.

Despite the challenges that accompanies PMD, Jacob grew into a happy child whose favourite activity was to chill with his friends. He loved to swim and downhill ski. His Halloween costumes were often the most creative in his school and in our neighbourhood. Jacob thrived when he was integrated into mainstream classes and programs and despite his need for constant assistance and nursing care, his health was stable. He was fed by a tube inserted into his stomach when he was six weeks old and required more medication than most of the geriatric population. Despite all that, he was healthy, in his way.

When Jake was discharged from the hospital in August 2015 following a series of prolonged illnesses, his needs were vastly altered. At his core, he was the same kid who loved to laugh and found reasons to smile despite the hell he experienced and the frequent need to have a tube inserted down his throat to suck out the mucous that often blocked his airway. The Jacob who was discharged from the hospital is medically fragile, his health is unpredictable and the only consistency in his care needs is that it is inconsistent.

Life “before” wasn’t terribly easy, but it was manageable.

I had my share of battles on Jake’s behalf, but most of them were to ensure he was treated as a person, with thoughts and feelings, not simply as a body in a wheelchair. It was surprising how many people in positions of responsibility, including medical professionals and educators, would ignore my son and not address him directly, preferring to assume that because he was non-verbal he didn’t understand conversations around him. Or maybe they were so uncomfortable around disability that it was easier to ignore my son than look into his big green eyes and say hello.

Our family of five seldom went to a restaurant together, and we only went to a movie as a five-some once. Most of the time, my family outings were with my husband and my twin daughters, Jake’s younger sisters, or with my husband and Jake. Once in a while we would go to a party or an event as a quintet, but always aware that Jacob’s medication or feeding schedule would necessitate an early departure. We never went on vacation together and Jacob has never been on an airplane or a train.

My “after” life is spent trying to ensure that the nurses we have know how to properly care for my son.

His suction requirements are diametrically different from the textbook procedures so even the most experienced nurse needs to learn how to safely clear Jacob’s airway.

Gone are the days that Jacob is awake and ready to go to school before the bus arrives at 8 am. The Jacob in my “after” life does not get out of bed until 11am on a good day, does not regularly attend school because his immune system is too weak to withstand a simple cold and plans are made with the tacit understanding that they are tentative until the moment of departure. He attended school for one hour over the entire academic year last year, and this was a significant achievement for him.

Gone are the days that we can schedule an activity for Jacob ahead of time and reserve his spot. Gone are the days that my son could come with me to the grocery store or to run an errand. These days Jake’s breathing challenges are almost constant and sitting in his chair is often too taxing for his respiratory system to manage.

Before, our nights were routine – at 11 pm a nurse would arrive and spend the next nine hours in Jake’s room, ensuring his safety, providing medication and tube feedings, and turning him every two hours. The possibility of choking was always present, but we knew how to properly position him to minimize the chance of an accidental aspiration.

My “after” life is dedicated to doing everything humanly possible to help Jacob live a full and meaningful existence. But the roadblocks placed in front of me by the very system that was supposed to help support my son make climbing Mount Everest in a blinding snowstorm trivial in comparison.

Watching my son’s health deteriorate while his cognitive abilities and interests remain intact is heartbreaking at the best of times, torturous much of the time and depressing all of the time. I need to repeatedly summon the fortitude to stand up for my son’s rights as a human being, to fight for nursing care that is competent and consistent. My efforts are dedicated to navigating a health care system that despite the catchy “Patients First” slogan, puts the desires of the administrators ahead of the needs of my son, and allows medical professionals to acknowledge the deficiencies in the system but enables them to shake their heads in sympathy while stating that it is beyond their scope of responsibility to help.

My “before” life was different from most of my friends’ lives but it was mine. I knew our limitations  and figured out how to cope with Jacob’s challenges while ensuring all my kids had a variety of experiences. My “before” existence involved a lot of driving – transporting Jake to school, to appointments, to activities.

Instead of using the “after”  time to build memories with my son, too much of my time and energy is focused on ensuring Jake gets qualified and dependable nursing care.

Without my diligent oversight, I would not have known that a nurse tried to place food in Jacob’s mouth, I would not have awoken a nurse out of her drug-induced sleep at 3 o’clock in the afternoon, I would not have seen that a nurse did not know how to properly measure a dose of medication and I would not have witnessed incompetent nursing skills that would not have been tolerated in any reputable hospital in the province.

This precious “after” time that should be spent with Jacob and the rest of my family is dedicated to making sure we have a nurse scheduled to arrive for her appointed shift because Jacob is dependent on the care of skilled people to help ensure his airway is clear and his breathing is as comfortable as possible.

It’s been many years since I’ve thought about the concept of fairness – it’s not fair that Jacob has PMD, it’s not fair that my son struggles for air and it’s not fair that all my children have to watch, helplessly, as their mother devotes so much effort to ensuring Jake receives quality care at the expense of creating precious family memories.

It simply isn’t fair.

Who I Run For – The Adventures of Team Jake

RES

“You’re having strangers stay at your house?” asked my friend tentatively.

“On their honeymoon?”

“Well, we’ve never met,” I said, “but they aren’t strangers.”

My friend was mortified.

I didn’t think it was weird, and I wasn’t worried, despite the fact that our only exchanges with this couple had happened on Facebook.

Kelly and her fiancé Kevin were part of Who I Run For, a Facebook group that pairs children and adults with disabilities with athletes to create a mutual support system. The athletes and their training and events provide excitement for those who can’t be as active, and the buddies with disabilities provide a new kind of purpose and motivation that power the athletes’ workouts.

My 14-year-old son Jacob was matched with Kelly, who lives in New Hampshire, in 2014.

From the day they were matched, Kelly posted messages to Jake about her running adventures. She almost always included photos from her runs and it became clear that Kelly had recruited her fiancé, Kevin, and her son, Nick, to run for my son as well. Together they formed Team Jake.

As time passed, our family got to know Kelly and her family. We saw photos of them holding homemade signs that read We Run 4 Jake along the routes of their runs and we shared Kelly’s stress around the wedding plans, including the last minute aggravation with her wedding gown!

Team Jake came into our lives around the time that Jacob’s health started to deteriorate. We didn’t know Kelly during the 12 years that Jacob’s health was stable and he was able to ski, attend sleep-away camp and be a full-time student. She wasn’t around when we fought, successfully, to have Jake attend a regular school and she missed the time Jake was invited to listen to his favourite singer, Andrea Bocelli, rehearse before a concert.

We were matched shortly before Jake spent almost a year living in the hospital. Kelly was in our lives when Jake was rushed to the hospital and spent weeks in the intensive care unit, hooked up to machines helping him breathe. She was around when he celebrated his Bar Mitzvah as an inpatient. Kelly and her crew stayed abreast of Jacob’s challenges and frequently sent notes of support and upbeat messages to us. She also sent Jake medals from races and t-shirts and other running paraphernalia that she, Kevin and Nick collected.

One cold Sunday morning, when my husband, Andrew, Jake and I were having our weekly coffee at Starbucks, my phone alerted me to a message from Kelly with the most exciting and unexpected news: she and Kevin were coming to meet Jake on their honeymoon.

They planned their post-wedding week so that they would arrive in Toronto on a Friday and we invited them to stay with us for the weekend.

How perfect would it be if the newlyweds and Jake could run a race together? It didn’t take us long to find a race that coincided with Kelly’s and Kevin’s visit. After a brief discussion with the race director, Kelly informed me that everything was set—they would run the race with their buddy and push him across the finish line.

It all sounded great in theory, but would Jake be healthy enough for the 30-minute drive to the race?

The run was scheduled to begin at 9 a.m., but my son hadn’t been out of bed before 11 in over a year. That’s because it takes a long time to clear his airway so that he can sit up in his chair without struggling to breathe. And just two weeks earlier Jake was so ill that he narrowly avoided an ICU admission.

But Jake being Jake, and one to never miss a party (except for his 14th birthday when he was so sick he slept for almost five days) or a chance to be surrounded by friends, we had to try. So we crossed our fingers and made the plans.

I was only a little surprised when I went into his room at 7 a.m. on race day and saw a pair of large green eyes, fully awake, ready for his latest adventure. He was excited and blinked his eyes to confirm that he was ready to run with Team Jake!

Dressed in a teal blue t-shirt that read Kelly And Kevin Run For Me, my son fit perfectly between his runners, who were wearing the same shirts with the banner I Run For Jake. As they crossed the finish line, the trio gladly accepted their medals and posed for photos.

Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

Leaving My Severely Disabled Son to Go on Vacation

severely disabled

Raising three children includes non-stop planning, organizing, supervising and worrying. And because one of my kids is severely disabled, the planning, organizing and supervising takes on a whole new meaning. And the worrying, well, that’s off the charts. Jacob, my 14 year-old son was born with a rare neurodegenerative disorder that impacts all aspects of his daily life, including walking, talking and eating.

For the past few years, Jacob’s primary health challenge has been breathing – it’s agonizing watching and listening to my firstborn struggle to inhale, seeing the colours of his lips change from a healthy pink to a terrifying shade of blue.

But I adapt and what initially seemed overwhelming eventually settles into a routine of sorts. I often coach him to “get your numbers up” (a reference to encouraging him to breathe deeply to increase the levels of oxygen in his blood), talking him through the times when his eyes plead for help, confirming that he needs me to snake a 25 cm plastic tube into his airway and clear the secretions that are making it difficult for him to breathe.

I know I have no choice but to deal with the crap that comes with having a child so medically fragile that the only predictable thing in his life is that his health is unpredictable.

Ensuring his medications are properly administered (the errors that have occurred are mind-boggling), making sure we don’t run out of distilled water for his oxygen concentrator and BiPAP machines, confirming nurses are scheduled to arrive are just some of the constant items on my to-do list that never ends. Appointments are made with the understanding that they might be canceled at the last minute if Jacob is too weak to leave the house, or if he can’t sit in his wheelchair because he is having too much trouble breathing. Our friends know that our plans are tentative, dependent on Jacob’s health status, and Jacob’s swim instructor knows that a last minute cancellation is always a possibility. It’s been almost a year since Jacob last attended school, his immune system too weak to risk exposure to even a simple cold. Nothing with Jacob is ever simple.

Life goes on, days stretch into weeks and before I realize it, nine years pass without time away for my husband and I to unwind and relax together.

Sporadic dinners at a restaurant without the kids don’t give us the break we need. With my cell phone by my side, I rarely have an hour without a call or text from the caregivers at home.

According to the literature on caregiver stress and health of long term caregivers, I concluded that I was on a path headed for self-destruction. I was used to years of fragmented sleep, being so tired I had trouble forming coherent sentences and left the keys in my car, running, on more occasions than I’d like to admit. It was obvious I needed to take care of myself in order to be the best carer for my kids and as many times as people, both medical professionals and friends, would say that I needed to look after myself, it felt like it was impossible.

As strange as it might seem, I was never a big believer in vacations.

Sure, they were fun, something to look forward to and I loved traveling and experiencing new cultures but I don’t remember experiencing the “need” for an escape.

A few months ago my husband, Andrew, was itching for a break. He needed and wanted a vacation, to go someplace where he could kite-surf, spend time in and on the water away from his computer, his job and responsibilities. He wanted me to go but I was hesitant. How could I possibly go on a vacation and leave Jacob? Would my son be ok without me? Would the nursing staff show up? How would my twins manage if I wasn’t there? So Andrew started investigating destinations for a solo holiday.

I’m not sure how it happened, but at some point in his trip-planning, I reluctantly agreed to join him. We booked a week at an all-inclusive resort in the Caribbean, a place that was known for wind so that Andrew could kite-surf all day long while I engaged in less-adrenaline filled activities like reading and sipping rum-laced drinks by the pool. Once I made the decision to go, Andrew confirmed our reservation and I had two weeks to get ready.

My daughters’ schedule was straightforward – they have school and their activities. Organizing their care is straightforward, though time-consuming. At 11 years old, they are on the verge of being self-sufficient, able to prepare their school snacks and grudgingly able to make their own breakfasts but still require oversight supervision and someone to remind them to brush their hair and teeth.

But Jacob…that was, and always is, an entirely different story. Although he requires 24/7 nursing care, securing consistent and competent nurses is challenging. And this was the single, most stressful hurdle that needed to be overcome for me to safely leave my son and embark on a vacation.

The “things to know” document was 14 pages long, including backup contacts for the backups. There was a list of 12 people to call in the unlikely event that I wouldn’t be reachable by phone or text in the event of an emergency. I designated a medical decision-maker in case something critical happened while we were in-flight, the only time both Andrew and I would be totally unreachable.

Was I excited for our upcoming adventure? No, not at all.

My mind was filled with checklists, things that needed to be organized for the time I was away. I had to ensure my daughters were looked after; someone had to prepare their meals, drive them to and from school and their various extracurricular activities and make sure they showered at least a few times during my absence. And Jacob….the details that needed to be addressed were so numerous, it would have been so much easier to stay home and not even attempt it.

I was filled with doubt – again. Was it the act of a responsible parent to leave my children while I went away? Was it selfish of me?

Should we cancel or have Andrew go alone? There were so many times I was ready to scrap the entire plan and stay home. It would certainly have been easier to forego the trip.

A week before our scheduled departure, our case manager had the chutzpah to say that she “wouldn’t be able to live with herself” if she didn’t ask if I’d “considered everything that could go wrong with Jacob in my absence.” (For the record, I live each moment of every day aware of everything that could happen!) Now that her conscience was relieved, mine wasn’t: I wanted to cancel our trip. I had to be resold on the idea by my husband who was desperate to feel the wind in his kite.

I didn’t truly believe I would board the plane and go away but when I found myself lying in the shade under a coconut tree, listening to the sounds of the waves hitting the shore, I realized I did it. I realized that all the hype about vacations had merit. I was convinced. The outdoor yoga class overlooking the Atlantic helped make a believer out of me. Horseback riding in the ocean solidified my resolve to take another vacation in a few months.

Instead of reveling in the post-holiday glow, the day after my return I was informed that four of Jacob’s regular nurses quit their agencies to take jobs in hospitals.

It was a jarring return to reality.

Published on Her Magazine, May 17, 2016

The struggle for home nursing care (Toronto Sun – Front Page – Monday April 18, 2016)

By: Sue-Ann Levy

Marcy White’s soon to be 14-year-old son, Jacob Trossman, can’t move or talk and relies on a feeding tube to eat.

Trossman, who has suffered since birth from a rare neurological, degenerative disease similar to the one portrayed in the movie Lorenzo’s Oil, needs his airway deeply suctioned many times a day to ensure he can breathe properly.

White said after Jacob spent 236 days in Sick Kid’s hospital last year and his health deteriorated considerably, the family was allotted 24-hour nursing care through the Toronto Central CCAC in August 2015.

Since then, some 29 different nurses have come through their north Toronto home. Many of them have been “poorly trained and incompetent,” White said during a recent interview.

She added that for every mistake that occurs, there appears to be no consequences and contends the CCAC repeatedly tells her the “system is not set up for 24/7 home nursing.”

She cited such problems as nurses showing up at the last minute for a shift; a nurse forgetting to put up the railings of Jacob’s hospital bed, which caused him to fall out; another feeding him her food in his mouth with her finger (even though he’s been tube fed since birth) and another who fell asleep on a day shift because she took too much codeine.

“We still don’t have a stable and consistent schedule and Jake has been home (from hospital) 8 1/2 months,” she said.

White’s husband, Andrew Trossman, said that despite the considerable off-loading of hospital services to the community, the system is just “not designed” for people who are as sick as their son Jacob.

Nolan Reeds, spokesman for the Ontario Association of Community Care Access Centres (OACCACs), insisted that parents of kids with medically complex needs are the “primary caregivers,” and that the CCACs “regularly train” parents on how to suction their kids and administer medications (the families I interviewed said it’s more often than not the other way around).

He added that performance issues related to employees of nursing agencies are the responsibility of those agencies.

Representatives of two nursing agencies regularly contracted by the Toronto Central CCAC — VHA and Saint Elizabeth — insisted their nurses have not only had experience working with children (often in a paediatric hospital setting), but that ongoing training and support in advanced skills is also available to them.

Both agencies also indicated they have formal complaint processes.

Mairead Cavanagh, a single mom of two boys, has had to fight with Central CCAC to even get 88 hours a week of nightly nursing and personal support worker care for her seven-year-old, Maleek Lubambula, who suffers from a rare congenital syndrome which causes respiratory, airway, cardiac, GI and hearing issues.

Maleek breathes through a trachea tube and also requires a feeding tube and a Picc line to to deal with his severe bowel problems.

Cavanagh said the challenge has been finding a nurse “trained to do” all the things Maleek needs. She said there are times when she has been “horrified” by mistakes that were made and was once woken up by the sound of a nurse snoring.

“I had to wake her up … she was snuggled up on some toys,” she said.

She said her ability to “trust nurses with his care is very limited.”

Cavanagh added the issues are “across the board” — present in all agencies — and one big issue is that if these nurses were providing complex care in the hospital, they’d have a whole team of colleagues to help them. In the community, nurses have no such support.

Shae Greenfield, spokesman for health minister Eric Hoskins, said they’ve heard clearly from Ontarians that they need to take additional steps to improve the quality and consistency of care patients receive through home care.

“Our office has reached out to the OACCAC and to the CCACs to look into the specific cases that have been brought to our attention to determine how we can improve the care we deliver to these families,” he added.

Mother runs her own show

After battling Toronto Central Community Care Access Centre (CCAC) first to get nursing services and then to get well-trained nurses, Samadhi Mora Severino finally won the right in mid-February to make her own decisions for her medically fragile four-year-old son.

Every month she gets self-directed funding from the CCAC for her son, Kian Snyder, to hire and pay the nurses and personal support workers she selects herself.

She receives 230 nursing hours and 84 personal support worker hours each 30-day cycle.

For the first three years of her son’s life, Mora Severino said she was never told she was eligible for nursing services for Snyder, who suffers from severe cerebral palsy. He can’t sit, stand or walk on his own and is just starting to talk a little bit.

She had to go to Ontario’s ombudsman for help.

But she said after going through 10 nurses from the time she started getting services in January of 2015, it became clear to her there were “many nursing issues” with the agencies contracted by the CCAC to deliver care.

Mora Severino said Snyder has “profoundly severe sleep apnea” which requires him to wear a BiPap machine while sleeping to help him breathe and a nurse is needed to monitor that machine all night.

But not many of the nurses who came to her had BiPap experience.

Once Mora Severino finally got self-directed funding two months ago, she hired two nurses through ads on Kijiji and Craigslist.

She conceded that while it’s a “much better fit” for Kian, her situation would not work for every family.

Mora Severino said she’s now not only Kian’s case coordinator but head of payroll responsible for ensuring she calculates the tax, WSIB payments and vacation pay for her employees.

“It’s almost like another job on top (of what I’m doing),” added Mora Severino, who working on a Master’s degree at York University.

Asked if working with medically complex kids was beyond the scope of CCACs, Noland Reeds, spokesman for the Ontario Association of Community Care Access Centres (OACCACs) said to the contrary, they are “honoured” to work with such children.

“While there are finite limitations on how many paediatric (specialized) nurses are available in Ontario, we work with hundreds of families to successfully care for their child at home,” he said.

The ins and outs of respite care for kids with severe medical complications:

  •  Nursing and personal support care at home is provided through local Community Care Access Centres funded by Ministry of Health and Ministry of Children and Youth Services.
  •  No protocol for number of hours provided: CCAC decides what families receive based on individual care plans and sub-contracts to nursing agencies
  •  Ministry of Children and Youth provides enhanced respite funding of $3,500. CCAC determines eligibility and arranges services.
  • Ontario CCACs says there are a limited number of specialized nurses (i.e., paediatric nurses) available.
  •  Saint Elizabeth has 500 nurses (RNs and RPNs) working in paediatric programs. They’re assigned to clients based on skills, experience and client/family fit.
  •  VHA has a dedicated team of child and family nurses. Nurses hired for the team have experience working with children, often in a paediatric hospital, go through a comprehensive orientation program and must demonstrate their field skills to a nurse mentor.

Part 5: Families with issues over home nursing care in Ontario say things not getting better

By: Christina Stevens

TORONTO — Weeks ago Marcy White shared her concerns with Global News about home nursing care for her son.

Thirteen-year-old Jacob Trossman knows exactly what’s going on around him but a neurogenerative disorder has robbed him of his ability to move or talk, leaving him especially vulnerable when things go wrong with home nursing care.

White told Global News about problems with getting nurses to fill shifts and incompetencies, and when other families revealed similar stories, we took their concerns to the health minister.

“Let my ministry work with the particular individuals,” said Ontario Health Minister Eric Hoskins on March 7.

He said that to investigate further, families would have to give their local Community Care Access Centres permission to share their their information with the Minister’s office.

White was the first of a dozen parents to do so, but said she hasn’t heard anything suggesting an investigation was underway since.

“Not a word,” she said, adding that instead, there have been more problems including alleged mistakes by nurses.

She said somehow more than five dozen of the wrong pills ended up in a bottle of Baclofen, which is used to treat muscle spasticity. The pills she said she found mixed in were Domperidone, for reflux.

White demanded an investigation and her CCAC concluded that it did “not believe that incorrect medication was ingested by Jacob.”

“But there really is no way to know because they have not been able to identify who did it and when it happened,” said White. “It’s terrifying.”

She insists the problems she has had with getting nursing shifts filled and quality of care are part of a larger systemic issue plaguing multiple families.

More than 50 parents have shared similar concerns with Global News.

The health minister’s office sent a follow up email to Global News saying that due to privacy issues, they could not go to the CCACs with a list of people who gave permission for the agency to share their information with the minister’s office.

After being denied an interview with the minister, Global News spoke with Hoskins at an unrelated press conference, who reassured families they will be investigating the complaints.

“I’ve asked the ministry to work with the CCACs,” said Hoskins.

Sheila Jennings, who has studied home nursing care extensively, said the minister should focus on the bigger bureaucratic issue of why shifts aren’t being filled.

“The minister’s response was effectively a way of dodging having to address the issue. I think an audit would be a really good idea,” said Jennings, a PhD Candidate at Osgoode Hall Law School.

White said a lack of accountability is putting lives at risk.

“The complaints, the issues that we have, as many times as we go through the proper channels to get them resolved — they just don’t get resolved.”

Part 4: Ontario health minister recommits to investigating home nursing complaints

By: Christina Stevens, Global News

It can be tough to watch Oula Alaoui clearing her son Yussuf’s airway. But it has to be done multiple times a day to keep him alive, so when she got funding for home nursing she was hoping to sleep through the night.

“I forgot even what it feels to have a full night’s sleep,” said Alaoui.

She found it next to impossible to fill the night shifts — day ones, not much better. And the nurses who did show up?

“Very, very few of them had experience with complex care.”

Some have been smokers, others slept on the job, Alaoui said. “It’s a very serious matter, you know he can choke in a moment.”

Alaoui is one of about 50 parents who shared their stories with Global News, detailing problems with home nursing — problems Global News took to Health Minister Eric Hoskins.

“I’m happy to look into these individual cases, with the families’ consent,” Hoskins said March 7.

He said if the parents gave permission for their Community Care Access Centres, known as CCACs, to talk about their case his office would investigate.

Global News provided the minister’s office with the names of a dozen families who consented.

Two weeks later his office sent an update.

“Due to privacy laws, I am unable to actually share the patients’ names with the CCACs,” Hoskins said in the statement, which recommends the families go through the standard complaint process — the very process families told Global News was not working.

Requests for an interview were denied, so Global News tracked him down at an unrelated press conference.

“Even if they provide the CCAC with written authorization for them to disclose to the ministry, that doesn’t necessarily allow the conversation to go beyond that,” said Hoskins.

When asked whether any of the CCACs had come forward to his office to say they had a family who wanted their case investigated, the minister did not have a clear answer. He repeated that privacy is key.

When the press conference was over he initially refused to provide additional time to discuss home nursing. However, after a brief consultation with staff he did return to answer more questions.

Hoskins was asked whether any kind if investigation has started.

“I’ve asked the ministry to work with the CCACs,” was his response.

The families also gave permission to their care co-ordinators to talk to Global News about their cases, but the contacted offices refused to.

Hoskin’s office has followed up with a new statement.

“At the Minister’s direction, the ministry is reaching out to CCACs to ask them to confirm that we had the appropriate consent to allow them to share information for the patients you have referred.”

It included a direct contact for the families. Meanwhile, families aren’t backing down.

Alaoui said they are tired of being bullied and made to feel like they are the problem.

“If you complain a lot that means you are trouble mom.”