Category Archives: New experiences

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.

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

Why I Now Find Halloween Scary

Jake in the box 2015

Designing Jacob’s Halloween costumes is an annual project in our house.

One year, we built a drum set around his wheelchair. Another year my husband, Andrew, constructed a race car emblazoned with a Ferrari logo. And this year, Jacob went as a Jake in the Box. It was a family venture: I came up with the idea, vetted it by Jacob, Andrew built it and Jacob’s twin cousins and twin sisters spent hours painting it in our garage.

Last year instead of trick or treating with his sisters, Jacob spent the evening at a pediatric after-hours walk-in clinic, waiting for confirmation that the blisters on his tonsils were strep throat. We expected that the antibiotics would kick in by the morning and within a few days, Jake would be much better. That’s what had always happened in the past.

But this illness was not going to be cured with a simple dose of Amoxicillan.

By the end of the weekend, he wasn’t better. Jacob was struggling to breathe. His little body working really hard to suck air into his lungs and he sounded like he was gargling. This hadn’t happened before so we didn’t have supplemental oxygen or medication to assist him. Suctioning didn’t seem to help clear his airway and his colour dipped into an unhealthy grey-blue shade.

Not one to panic easily, I knew Jake needed to be evaluated at the hospital. Since Andrew was in Europe on a business trip, and my daughters’ school was on the way to Sick Kids hospital, I decided to drop the girls off at school and continue downtown with Jake.

As we neared my daughters’ school, Jacob’s breathing became increasingly laboured. His colour  worsened and his heart rate was alarmingly high. Jake’s sisters were scared, one of them had her fingers in her ears to block out the sounds he was making. When we pulled up to the school, I scanned the parking lot to see if any doctor-parent was dropping off their child at the same time. I was trying to decide whether to pull over and call 911 or continue driving downtown.

Sierra and Jamie reluctantly got out of the car so I could rush their brother to the hospital. With a promise to call and let them know how Jake is once he was evaluated, I sped off. Still unsure whether I was making the right decision to continue to the hospital instead of waiting for an ambulance, I drove as quickly as I could, while keeping an eye on my son, trying to reassure him that he would be ok.

Fear screamed from his eyes, and I’m sure it was mirrored in my own.

I remember the tightness in my chest, feeling my heart beat against my rib-cage, my breathing fast and shallow as I kept debating whether I was doing the right thing by not calling 911. I reasoned that I would get to the hospital faster than an ambulance would get to us. I know I arrived at the ER and Jake was still struggling. I remember being seen immediately by a doctor, an oxygen mask fitted to my son’s face while the nurse asked me the standard intake questions.

The rest of the day is a blur in my mind. I know that Jake was admitted to the hospital, an iv was inserted and stronger antibiotics were started. I don’t remember the specifics of that day, only that I did send a message to my daughters as promised and arranged for them to get a ride home from school with a friend’s mother.

I will always remember the following morning, my back sore from a virtually sleepless night by Jake’s bedside, my eyeballs dry and sore when I had to press the emergency call button because Jacob wasn’t breathing properly. Within moments, a slew of yellow gowns (doctors, nurses and respiratory therapists wearing the protective garb required before entering a patient’s room who is isolation with an unknown, potentially contagious illness) appeared, a mask was placed over his face and someone squeezed the balloon of air into his throat, calmly telling me she was “going to call a code”.

Jacob ended up in the intensive care unit for 12 days, in the hospital for a total of 33 days. When he was discharged, he was dependent on oxygen at times for his laboured breathing. Six weeks later, Jake was readmitted for another respiratory illness and spent a total of 237 days in the hospital over the past year.

To me, Halloween 2014 marked the beginning of Jacob’s deteriorating health. As the end of October neared this year, I was scared. I couldn’t help but remember Halloween 2014 and the year that followed. As much fun as the holiday is for most people, I dreaded it. I was nervous for Jake and for our family.

Jake had a great costume ready, and our goal was to go out trick-or-treating with some friends. But I wasn’t sure if my son would have the stamina to manage the outing. Jacob is a party-person and not one to miss a chance to be with people, but like so many things in his life, it wasn’t going to be easy.

The original plan was to go to a friend’s house a couple of blocks away for dinner prior to the evening quest for candy. As we were getting ready to leave our house, Jacob wasn’t ready to go. His breathing was not good, and he needed a lot of suctioning. Every time we tried to put him in his wheelchair, his body was working too hard to breathe and he needed to lie down.

Our plan B was set in motion. Andrew and I decided to take Sierra and Jamie as planned, leave Jacob at home to rest with two nurses by his side in the hopes that more suctioning and some time would help him gather some strength.

When the girls were getting ready for the main event of the evening with their friends, Andrew walked home to get Jacob so we could all go out together.

As I exited the house and made my way to the sidewalk, I was greeted by my smiling son, all dressed in his costume and ready for trick-or-treating. Not only did he come out with his sisters, he insisted on staying out as long as they did.

– See more at: http://hermagazine.ca/why-i-now-find-halloween-scary/#sthash.5ryE7cFE.dpuf

Why Home Nursing Is Not Respite For One Mom

Felix + J - March 23 2014

It looks good on paper.

After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home.

But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters so my son doesn’t choke to death—we’re facing alarming incompetence when they do show up.

Jacob has had registered nurses care for him every night since he was discharged as a three-month old baby. In those days, our challenges were nurses who fell asleep, a nurse whose eyesight was so poor she had her driver’s license revoked, and the one who was arrested for shoplifting at Winner’s when she hid items behind my son’s back on a walk.

Talk to a family whose child relies on home nurses and most have a story or two about workers who fall asleep during night shifts (I’ve never heard of anyone being disciplined because of it).

But in the last few months, the mistakes nurses have made while caring for my son at home have alarmed me beyond measure.

One fell asleep at 3 o’clock on a Saturday afternoon. When I woke her up, she apologized, saying: “I’m sorry, I took too much codeine.”

Another nurse placed food from her fingers in Jacob’s mouth, despite the fact that Jacob has always been fed through a stomach tube because of life-threatening breathing problems. At the time, he also had a collapsed lung and required frequent suctioning and oxygen. “Everyone should be able to taste food,” she explained.

There’s been a nurse who couldn’t speak English, one who repeatedly poked him in the eye and accidentally wrote on his face with pen, and one who’d never suctioned a patient before.

Another nurse thought 140 mg of medication was equal to 1.4 ml of liquid. She didn’t realize that one measurement was for solids and one for liquids. She thought they were interchangeable.

A day ago Jacob fell out of bed onto a hard tile floor because the nurse had him too close to the edge and the railing was down. Aside from a lot of crying, I’m not sure how he didn’t break something. When I reported this to the director of the nurse’s agency, she responded: “Thanks for letting us know. We will log it in our risk file.”

The nurses I’m writing about still work with the agency that’s the largest provider of pediatric nurses in Toronto. Prior to welcoming them into my home and introducing them to my son, I was assured that they had the qualifications and experience necessary to safely care for Jacob.

We have met a handful of wonderful, caring and skilled nurses. But although we’re funded to receive round-the-clock nursing, we can’t get consistent, competent care. Everyone involved knows this, but excuses are constantly made.

Until something as serious as death can be attributed to the malpractice of a home nurse, I’m afraid the system will continue to ignore the danger faced by the most vulnerable patients like my son.

Because of Jacob’s medical fragility, he is always at risk of choking. His breathing problems are constant and we rely on the skills of proficient nurses to clear his airway and administer oxygen and other medications when he turns blue. There is little room for error or hesitation when his oxygen levels plummet to dangerously low levels.

It’s safe to say that I’m barely hanging on at this point. I actually parked my car on Avenue Road the other day and as I was going into the bagel store I realized that not only did I leave the keys in the car, I left the car in park, running! A few days ago I went to pick my daughter up at gymnastics at night and ended up at her school by mistake. I am exhausted. I even have dreams about being tired. Perhaps it will be me who is hospitalized next.

Despite families like ours receiving funding to cover round-the-clock nursing, there’s no respite when you’ve witnessed many serious errors in your child’s care and a nurse “no-show” (with no backup) is just a call away.

Originally posted on BLOOM

Disabled teen celebrates bar mitzvah at Sick Kids

familyWith Jacob, front, at his bar mitzvah are, from left, his sister Sierra Trossman, his father Andrew Trossman, his mother Marcy White, and sister Jamie Trossman. NECHAMA LAITMAN PHOTO

TORONTO — May 18 marked Jacob Trossman’s leap into manhood, and there wasn’t a dry eye in the room.

Surrounded by 120 family members and close friends, all of whom have been touched by Jacob in some way, the young man celebrated what is believed to be the first ever bar mitzvah ceremony at the Hospital for Sick Children.

Jacob has been at Sick Kids since January after spending three weeks in the ICU with a respiratory virus. He suffers from Pelizaeus-Merzbacher disease (PMD), a progressive central nervous system disorder in which co-ordination, motor abilities and intellectual function deteriorate, to the point where people with the condition can no longer move.

Until recently, Jacob used an iPod to communicate, which opened a whole world for him. It was programmed with several main categories and sub-categories that Jacob could activate with just a slight movement of his head.

However, Jacob can no longer move, so a new communication device, called a Blink Switch, was designed just for him.

“When it came time for Jacob to do the brachot before and after the Torah portion, I took his hand with the tallis to touch the Torah. At that point, Jacob would blink his eyes to activate a computer to recite the brachot,” said his mother, Marcy White.

Jacob Trossman is hoisted on his chair during celebratory dancing

He had help with the actual Torah reading from a special friend, Hannah Sandler, who recently celebrated her own bat mitzvah and wanted her bat mitzvah project to relate to Jacob.

“My very close friend Jacob was born with Pelizaeus-Merzbacher disease and is not able to communicate – at least, not with words,” Hannah said. “After my bat mitzvah, I learned Jacob’s portion and recorded it for him so he would be able to read from the Torah through my voice using a computer device.”

Dr. Tom Chau, senior scientist and vice-president of research at Holland Bloorview Kids Rehabilitation Hospital, elaborated on the workings of the Blink Switch: “The device that Jacob is using is based on the measurement of electrical activity of the muscles in the forehead area. When Jacob blinks, he needs to activate his eye muscles. The muscles are controlled by electrical impulses,” he said.

“A headband sits on Jake’s forehead, and that’s the part that captures the electrical impulses of his muscles. When he blinks, it’s detected by the device, and it communicates to a computer via Bluetooth. When the computer receives that signal from the device, it activates the recorded speech. In this case, it was the blessings for his bar mitzvah.”

PMD is a myelin disorder in the same family as multiple sclerosis and is inherited as an X-chromosome-linked recessive trait, meaning affected individuals are male, but the carriers are female. It affects about one in 100,000 babies born worldwide and is not limited to any particular demographic population.

“Jacob can’t talk, walk, or move but he can smile and laugh. His vocal chords are paralyzed in the medial position, so that means they can’t open fully, which makes breathing challenging. As well, they don’t close fully, which makes swallowing dangerous because he can’t protect his airway. But because they are in the middle position he can make sounds,” his mother said.

“Jacob’s simchah was a statement by him and his family of the importance of the inclusion of Jacob and other challenged members within our community,” said Rabbi Baruch Frydman-Kohl, spiritual leader of Beth Tzedec Congregation.

Jacob is alert and aware of his surroundings and has a great sense of humour. As his friend Hannah said, “Right after the ceremony, I said, ‘Jacob you did a great job! Are you happy?’ and he blinked. Throughout the day, I went up to Jacob and I said, ‘This is your day, Jacob. Are you having fun?’ and he would blink. Jacob is an amazing boy, and he understands everything that’s going on.”

Jacob will be going home this month and will have 24-hour nursing care.

Wanted For September 2014:

Wanted: 

A school placement for Jacob that is not afraid of a boy in a wheelchair. A school that is interested in treating him as a person, with dignity and respect.

Qualifications:

– Empathetic principal, willing to put a student’s needs before union policies.

– Creative, energetic teacher who can see past his physical limitations and program accordingly.

Remuneration:

– Immense levels of satisfaction knowing a difference is being made in a young person’s life

If you know anyone who is interested, please reply to this post.

 

Will kids make fun of him?

“The kids in his class will make fun of him.”

I sat there stunned, until I regained my composure, caught my breath and calmly stated: “then maybe this is not the right school for Jacob.”M+J - May 15 2013

The setting: the intake meeting at the new school Jacob is registered to attend in September

The attendees:
the principal of the new school, his teacher for next year, his current teacher, his current nurse, his current speech therapist, several other “officials” from the Toronto District School Board and me, Jacob’s mom.

The question: when Jacob needs a position change, which positions does he like?

The answer: he sometimes likes to sit on an adult’s lap.

The response: middle school kids are a different breed – the kids in his class will make fun of him.

There were so many ways in which I could have responded, including suggesting empathy training for the staff and students and stating my hope that the special education teacher at the new school was underestimating the sensitivity of the children. It took a ton of self-restraint to keep from pounding my fist on the table and demanding,”what type of environment is this if the first thing that comes to your mind when you hear that my son, who has severe scoliosis and frequent back pain, among many other challenges, is that he would be ridiculed for wanting to sit on someone’s lap?”

This conversation happened a few weeks ago and I haven’t been able to get it out of my mind. I’m troubled by the fact that the “powers that be”, nameless, faceless bureaucrats at the TDSB, upon studying my son’s file, recommended this school as the best fit for him. Do they condone this thinking or are they so far removed from the front lines that they do not have a true idea about what goes on in the schools they manage? Or, as I desperately want to believe, was the teacher simply wrong?

The more I ruminate over this, the more agitated I become. As my son’s advocate and his voice, I want to ensure that the transition to his new school is trauma-free and successful. He had the most ideal few years at Elkhorn Public School in an environment that was warm, friendly and productive. It was the textbook-perfect example of inclusion. Unfortunately, Jacob is graduating from Elkhorn in a few weeks and this is what necessitated his move for the next school year.

When I picture his first day in the new school, I imagine how terrified he will be. A new environment, new teachers, new kids, nobody who knows that he loves funny jokes, being pushed in his wheelchair at high speeds and interacting with kids his own age. These images don’t get easier when the teacher’s voice echoes in my mind: the kids will make fun of him.

Jacob has many years of wonderful memories of meaningful interactions with his typically developing peers, at school, at extracurricular programs and over the summer breaks. To my knowledge, he has never experienced any negative comments from kids (I wish I could say the same for comments from adults, but unfortunately that would be a lie).

I’m re-evaluating Jacob’s school placement for September and I need your help: for those of you who have typically developing kids in middle school (grades 6 – 8) do you think your kids would make fun of a child like Jacob because his needs are different? For those of you with kids with special needs in middle school, are your children subject to ridicule by their peers?

My Son is My Greatest Teacher

Toronto-20130713-00018Posted in Yes We Can on Clubmom.ca May 29, 2014

I had no idea how my safe and insular world would be tossed, shaken and dropped unceremoniously on its head with the first breath of my first child in May 2002. It was Jacob’s birth and early struggle for life that led me to my unequivocal vocation, the one I never thought I would have. It wasn’t a dramatic shift, despite what you might expect. Instead, the realization gnawed at my brain like a persistent cat that wants a head rub. As I watched Jacob fight for his life and baffle the medical professionals who were at a loss to explain his illness, I knew I had to stand up and advocate for my little boy.As Jacob was closing in on his first year, we received a shattering diagnosis. Jacob had Pelizaeus-Merzbacher disease (PMD), an incurable and rare neurodegenerative disease. Jacob’s prognosis was grim. The doctors told me that he would never speak or sit independently. His symptoms would worsen as he aged.

Once the shock wore off, I determined to do whatever was humanly possible to find a cure for this horrible disease. I was not ready to sit on the sidelines and watch as PMD slowly ravaged my son’s body. He deserved more. And as his mother, I was not going to let anything or anyone stop me from giving him the best chance at a full and happy life.

The first handful of years after Jacob’s birth were unbelievably difficult. In addition to learning how to be a first time mother, I had to learn how to care for a severely disabled child. I had to familiarize myself with this new and scary world. I spent a lot of time learning, I did not have much wisdom or experience to share.

As my son grew, I earned a “PhD in Jacob” and gained confidence in my ability to care and advocate for him. I began to trust my instincts and learn when to push for what Jacob needed, and when it was okay to let some things go.

Four significant realizations included:

1. Despite wanting to, I can’t do it alone and have learned to let others help with Jacob’s care.

2. I learned patience and to appreciate the small things that I used to take for granted. Jacob’s first smile came when he was almost a year old. He learned to communicate yes/no when he was about four years old. And his first words, with the help of a specially designed iPod were “I want a great big hug.” He was eight years old.

3. I learned how to take what life threw at me and how to cope with it. If Jacob could find reasons to smile, then I could too. There were many, many times when I said “I can’t do this” but as Jacob got older and I settled into my new normal I noticed that I can do this. There are still times when I think I can’t keep going but these thoughts comes less frequently. I know that I can and I will keep going.

4. I realized that I learn important, practical and relevant things from other parents. They are my best source of information, as they have traveled this road before me. Whether it’s an everyday concern as it relates to my daughters, such as a good way to get them to eat more vegetables, or something more obscure such as which positions are most comfortable for a child with severe scoliosis, they are a great resource.

I wrote The Boy Who Can: The Jacob Trossman Story with the desire that other parents facing challenging situations can gain hope and strength and know they are not alone.

Many people have children or siblings with special needs. Even more people have cousins, friends or colleagues with children who have special needs. I wrote the book for these people to get a glimpse into what our lives are really like. And more importantly, how they can still maintain their friendships with families like mine despite our dramatically different lives.

And finally, I would love for medical professionals, caregivers, educators and policy makers to fully comprehend what raising a child with special needs entails. Despite their best intentions, there is so much more to our lives than the small window that they see at the hospital, clinic or class room. I want them to know that their action or in-action can have a real impact on us.

The following are some small ways people can make a difference in the lives of children like my son, and their parents:
1. Don’t forget that the person in the wheelchair is more than simply a body in a chair. He has thoughts and feelings.
2. Bend down and talk to the child at their level.
3. Don’t be scared. Children will sense your hesitation.
4. You won’t catch their disability, you can come close to chat.
5. If you see someone struggling pushing a wheelchair, hold the door or elevator for them.
6. Empathize with what it’s like to be a person who cannot speak or move but who understands conversations around them. And don’t ignore or stare!
7. Notice their abilities, not their disabilities.
8. Most of all, treat them just like you treat anyone else their age and gender.