Part 3: Dozens reach out on troubles with home nursing care

By: Christina Stevens, Global News

Mairead Cavanagh is the mother of a seven-year-old boy who requires 24-hour care.

A tracheostomy tube, a PICC line, a feeding tube — those are just of few of the things a nurse who works with Cavanagh’s son Maleek should be familiar with but she said the home nursing care system is failing them.

Cavanagh is just one of dozens of families who have come forward in response to recent stories from Global News on home nursing care.
They say they have trouble getting nurses to fill the shifts, and the nurses who do show up frequently seem to lack appropriate training.

Nearly four dozen families have come forward in response to recent stories.

Cavanagh says it is a rare week when all of Maleek’s home nursing shifts are filled and when there is a nurse, it’s not much better.

Recently she woke up to find out that the nurse on duty was unable to re-insert Maleek’s trach tube, Cavanagh says.

“I had to get up and immediately perform emergency care.”

Cavanagh claims the nurse made a litany of mistakes that night, and hadn’t checked Maleek’s vital signs in hours.

She says there have been a number of problems, including one nurse walked out while Maleek was in respiratory distress because their shift was over.

Cavanagh said she sometimes finds it hard to believe all the problems there have been with home nurses.

Yet parent after parent has shared similar stories with Global News.

In contrast, the provincial government reports stellar numbers.

According to the Ontario Association of Community Care Access Centres, in the last fiscal year there were just 998 complaints out of 6.6 million home nursing visits.

Cavanagh doesn’t know how many complaints she alone has lodged.

“Oh my goodness, I would have lost track,” she said.

The CCAC also claim to fill 99.975 per cent of home nursing shifts.

Minister of Health Eric Hoskins was unavailable for a follow-up interview, but when Global News spoke to him last week, he would not acknowledge there is a systemic problem.

“I don’t think speaking with several individuals, about cases that I am not familiar with, is necessarily a pattern,” Hoskins said. “But I would encourage you, and it would require obviously the permission of the families that are concerned, I would encourage you to talk about the specific incidences.”

He said he`d only look into concerns with home nursing once the families consent for their information to be shared.

Some families have said they want to remain anonymous due to a fear of a backlash, and further difficulties getting nursing care.

However, nine families have agreed to let their local CCAC share their information with the minister’s office to facilitate an investigation.

“I can’t really understand how this isn’t an urgent policy matter for the Ontario Government,” Cavanagh said. “I need to really think for myself is it safe to continue?”

She says she’s at the breaking point, with home nursing. But when asked what her options are, the answer was one word.


Part 2: Ontario health minister responds to families who say home nursing system failing them

By: Christina Stevens, Global News

TORONTO — Ontario’s health minister says that until there is more proof, he does not believe there are systemic problems with families accessing home care nurses across the province.

Samadhi Mora Severino, the mother of a three-year-old boy with cerebral palsy, said her son Kian has complex medical needs, which home nurses help with — when they show up.

A recent shift was supposed to start at 10 a.m., “And the nursing agency calls me at 10:10 in the morning to let me know that the nurse wasn’t showing up,” she said.

Mora Severino said that on another occasion Kian was having a choking fit, but the nurse was in another room and didn’t respond.

“I’m waking up running and you’re in this room with your headphones on,” she said.

Another mother, Marcy White, had similar experiences, pointing out that the situations can sometimes be a matter of life and death.

“If Jacob can’t breathe, then he can’t live,” she said, adding that multiple nursing shifts have gone unfilled — a look at January’s schedule reveals gaps about 40 per cent of the time.

“There’s no accountability, there’s no oversight when things go wrong.”

The Ontario Association of Community Care Access Centres maintains that only 0.025 per cent of shifts go unfilled.

But Global News has also had emails from another half dozen families.

When Global News went to Health Minister Eric Hoskins with questions, he said he wasn’t familiar with individual cases.

Hoskins added he can’t comment unless each family gives permission to release their private medical information, at which point he would look into each individual case.

When asked why he wouldn’t comment on the bigger issue, that impacts many families, the minister responded by saying he was “not accepting your argument that there’s a bigger problem.”

In the 24 hours since Global News aired its first story, multiple people have emailed similar stories that detailed allegations of nurses with inadequate training, or being unable to get a nurse at all.

The issue doesn’t appear to extend to just children either, as several people also emailed with concerns over home nursing for adult patients.

Almost everyone who reached out to Global News said they have reached a crisis point.

“You can only tolerate so much,” said Mora Severino.

The minister repeatedly reiterated that families have to sign releases allowing their information to be shared, and only then would he be able to follow up.

“I’m prepared to work with them to understand what challenges they are having,” he said.


Part 1: ‘Do we have a nurse coming?’ Families worry shortage puts kids at risk

By: Christina Stevens, Global News

Ontario families are desperate for help, saying home nursing care for their children is a good idea but not working as expected.

Thirteen-year-old Jacob Trossman spent most of the last year in hospital. His family was elated when they were able to take him home, with provincial funding for 24-hour nursing care. Jacob was born with a rare neurodegenerative disorder, and could stop breathing at any time.

“We need a nurse to suction his airway, clear his airway and administer some medications,” said Marcy White, Jacob’s mom.

Jacob’s homecoming has not gone as expected. “We are in a crisis situation every day,” said White, who added they don’t have nurses to fill all the needed shifts.

The province’s Community Care Access Centres co-ordinate the nurses, who come from agencies, but White said time after time they’ve been told there is no one available.

She provided a spreadsheet showing that in January about 40 per cent of the shifts were unfilled.

“It’s terrible. It’s hard to focus on anything other than, ‘Do we have a nurse coming for Jacob?’”
She said last minute cancellations are not unusual, and not all of the nurses have the appropriate training.

“We’ve had a nurse who fell asleep on a day shift and when I woke her up she apologized, she said she was taking too much codeine. We had another nurse who forgot to put the bed rails up on his bed and he fell out of bed,” explained White.

Other families have said they are facing similar problems.

Samadhi Mora Severino’s son Kian has cerebral palsy and she says he needs a nurse every night, but that typically only five nights a week have been covered.

There’s no accountability, either when if comes to getting shifts filled or to ensuring qualified nurses show up, according to Mora Severino.

“This is a system issue but it needs to be addressed because it is big one,” she said.
The Ontario Association of CCACs says the rate of missed care for nurses is just .025 per cent. But neither Mora Severino or White believe those numbers.

Global News has received emails from another half-dozen families describing a similar situation with home nurses. The CCACs declined interview requests.

White said it is past time for the government to take action on this.

“At this point my husband and I are barely hanging on, and there’s no end in sight.”

It’s More Than ‘Venting’ When I Speak Up For My Special Needs Son



I was a very private person before I became a staunch advocate for my son Jacob. I would rather have had gum surgery than talk about my feelings.

Things are very different now.

Parenting, in general, is hard. Parenting medically fragile children and teenagers is fraught with unimaginable stresses, heart-crushing decisions and endless battles to ensure our kids are receiving the best care and access to the fullest lives possible. Our children’s needs don’t fit neatly in a box, and a cookie-cutter approach to caring for our kids creates additional problems for all involved.

As medical technology advances, kids with complex needs are living longer than in previous generations. Hospitals are discharging children with complicated care into the community in ever-increasing numbers.

Unsustainable pressures are placed on moms like me to act as doctors, nurses, speech/physio/occupational therapists and problem-solvers for our children’s medical needs around the clock without a break. This goes on for years, often decades, until our children pass away or are placed in full-time group homes.

It’s no secret that I have publicly stood up to the Toronto District School Board on more than one occasion to make sure that Jacob’s educational needs are met.

I’m thrilled to report that it has been recognized that in addition to benefiting from the academic inclusion, Jacob has taught teachers, students and administrators some wonderful lessons about perseverance and tolerance. He has won over many skeptics and proven that he is more than simply a body in a wheelchair — a degrading position nobody should ever be in.

It is also widespread knowledge that Jake’s medical needs have increased exponentially over the past year and a half. I’ve shared many details about the struggle I’ve faced with the home care system that is supposed to help me manage his medical needs at home.

Despite sufficient government funding (and not many people can say that!), home care nurses and the inherent dysfunction in the system are failing miserably, making our lives even more arduous and depleting than they need be.

A few days ago, I was surprised when a friend commented that she is used to seeing me “vent” on social media. I didn’t think I regularly used online groups to unleash my frustrations (aside from the groups that are intended for such purpose, and thankfully there are a few).

“To the doctors, nurses and social workers who hear our struggles and witness our breakdowns, please don’t just listen and commiserate. Step up and gather the courage to instigate change.”

Sharing the obstacles I encounter as an advocate for my son with severe medical issues is done with the hope that people will begin to experience a bit about what I, and many others in similar situations, deal with on a regular basis. My objective is that if people know and empathize with our tribulations, change will be more likely to occur.

So I share.

Broadcasting these battles has never been for the express purpose of “venting.” I share the demands of our lives in such a public way in order to assemble the strongest, safest and most comprehensive team of caregivers and opportunities for my son. The educational and home care systems in Ontario have not kept pace with the medical advances.

I am speaking up to draw attention to the deficits in my community. I am exposing some (not all!) of my challenges with the hopes that it will make a difference. I am sharing my experiences because most people are unaware of the flaws in the system. And if people don’t know how the parents, caregivers and families are suffering, then changes will not happen fast enough for our generation.

I’m disseminating details about my conflicts for the slew of other exhausted, beaten-down parents who don’t have the time, energy or ability to do it for their children. Just because I’m the loud mouth, pain-in-the-butt parent, don’t assume that I’m the only one. There are so many of us.

To those in a position to effect change, whether you are in a government, medical or another field, please don’t continue to stand by and watch us sink under the enormous pressure in which we find ourselves.

To the doctors, nurses and social workers who hear our struggles and witness our breakdowns, please don’t just listen and commiserate. It might not be in your written job description and I know you are worried about alienating some of your colleagues and being viewed as trouble-makers in the eyes of your superiors, but you are the ones who see and know our desperation. Stop watching and wishing you could make things better for us. Step up and gather the courage to instigate change.

Please do your part to get the help we desperately need for our beloved children. They deserve it.

Homecare Nursing Problems Affect the Whole Family


Home isn’t a comforting place anymore. Last year my brother Peter spent six months hospitalized at St. Gavin’s Hospital. Now that he has been discharged, he requires 24-hour nursing care at home. At first it was a little scary having so many people in the house but by the time school began, I knew them all and was becoming more comfortable.

In October, we found holes in the schedule. Uncovered shifts in the care Peter and everyone in my family relied on. My mom stayed up all night in his room and my dad canceled business trips, jeopardizing his career. When there were unfilled shifts, it was traumatizing for everyone. My mom was fighting hard to punish the agency for leaving us in this mess, my dad was just downright grumpy, Peter was turning blue and I… I knew there was nothing I could do, this was our new reality.

The agency was tired of my mom’s frustration and sent more nurses, maybe every nurse in Toronto (including Mike, who was very upset to share a name with me). It was difficult to get to know the nurses and be comfortable around them. I lock the doors to any room I am occupying to have at least a little bit of privacy. I am very terrified that the strangers will see that I have a diary. Boys aren’t supposed to have a diary!

When my daughter, Jamie, was in Grade 2, she began writing stories. After a while, they evolved into longer narratives, divided into chapters. The loot bag for her birthday party in Grade 3 was a 10-page spiral-bound book authored by Jamie and illustrated by her twin sister, Sierra.

At 11 years old, Jamie writes in a voice that belies her years, the richness of her descriptions are detailed and insightful. Depending on the topic, she will write from a character’s point of view. She wrote the opening paragraphs of this article from the perspective of a male adolescent.

All their lives, my daughters knew that their big brother needed more help than most kids. Feeding tubes, syringes, medications and pill crushers were familiar items to them. When they were in first grade Jamie gave her classmates an impromptu genetics lesson to explain how Jacob inherited the gene that caused Pelizaeus-Merzbacher disease (PMD).

But they were ill-prepared for the dramatic and sudden decline in their brother’s health. One daughter was terrified of entering the doors of the hospital, scared of what she might witness. The other one found comfort in Jake’s hospital room, spending hours cuddling with him in his bed as the hum of the breathing machine helped inflate Jacob’s lungs. And both girls eventually got over their fear of the suction machine, holding Jacob’s hand and singing to him when his oxygen levels plummeted.

After 236 days of Jake being an in-patient, his sisters were looking forward to having their big brother home. We were comforted with the promise of 24/7 nursing care, skilled nurses helping us manage Jacob’s fragile medical state in the comfort of our home.

None of us were prepared for the circus that followed, a comedy of errors that was anything but funny.

There have been so many nurses that Jamie and Sierra created a board listing the nurses ahead of time so they would know who is in our house at any given time. Although this sounded like a viable plan, it failed because we often didn’t know who would be coming for a shift until shortly before the shift was to begin… if the shift was even filled at all!

We were repeatedly told that the agency needed time to fill the schedule and they expected to have a stable list of competent nurses a few weeks post-discharge. That was August. Six months ago.

There are now five agencies contracted to provide what should be five to six nurses, but we are still not fully staffed. Two agencies have not been able to send a single nurse despite their claims of being able to meet Jacob’s needs.

The past half-year has been hard on all of us, each family member affected in different ways. I can only begin to imagine how uncomfortable and awkward it must be for Jacob to have so many strange caregivers, some with questionable skills, performing intimate tasks including bathing and suctioning.

I have yelled at the nursing agencies on numerous occasions, reminding them that my son is a person who is more than simply a shift to be filled. I ask them to think about how they would feel if a new person showed up every few days to spend many hours with them, each one unaware of how best to communicate with them.

I know how hard Andrew and I have been struggling. Jacob’s nursing needs are always on my mind, they even haunt me in my dreams, when I’m able to actually fall asleep.

But Sierra and Jamie are also suffering. They don’t feel at ease at home, the one place where they should always be able to relax. One of my daughters refuses to keep the door to her bedroom open, as she doesn’t want any of the strangers to look inside. And at bedtime, when we discuss our “roses and thorns,” the good and the bad parts of our day, she knows that Jacob’s nursing issues are always my thorns.

Both girls notice when a nurse treats Jacob as a small child, putting toddler cartoons on his iPad for him to watch. And this makes them angry. They say things like “Don’t they realize he’s 13? Why is he watching Magic School Bus?” And this breaks my heart.

Listening to my daughters say that they don’t feel comfortable at home when a nurse is with Jake in the next room is not right. Watching them seethe when a nurse talks to their brother like a young child makes me mad. And when they ask why a nurse was allowed to come back after falling asleep on the job makes me feel like I’m not doing enough for my son. And they are right — why is there no accountability in a profession that has professional guidelines?

When I read Jamie’s story about Mike, the boy whose brother needs around-the-clock care, I wish I could comment on my daughter’s vivid imagination. But I can’t. My talented daughter has used her skills to illustrate the reality of our life. I can only hope that someday soon she will write a follow-up piece: a story where Mike explains how comforting home has become.

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.

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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

What A Difference A Year Makes

what a difference a year makes

Things can change a lot in one year.

Last year at this time, I was helping Jacob settle in to his new school, working closely with his teacher and the school’s Vice-Principal to ensure a smooth transition. He was in a large classroom, over twenty kids, all of them strangers. The Special Needs Assistants assigned to help Jake were also new to my son. And as a middle-schooler, he had to move to different classrooms for various subjects, another change for him.

The school administrators were great at helping smooth the inevitable bumps along the way and everyone involved was committed to ensure that Jacob become an integral part of his new class, not an outsider as the lone non-verbal, wheelchair-dependent student.

With the help of some empathetic and forward-thinking senior administrators (yes, there are a few out there!), Jacob was exposed to the standard Ontario curriculum alongside his able-bodied peers for several years. Along the way, he taught many educators more than a few lessons about the benefits of inclusion, and I know he made a life-long impact on many of his classmates.

But despite all our work for a fluid progression to his new school last year, Jacob spent most of the year in the hospital, away from the classroom. Aside from a few Skype sessions and many cards and messages, Jacob missed out on the academic and social stimulation that school and friends provide.

This year, instead of arranging Jacob’s uneventful passage to grade seven, my energy is focused on ensuring that Jacob remains healthy and strong. It has been less than two months since his latest hospital discharge, and he spent 236 days in the hospital this year.

My priorities have shifted.

Rather than helping the teachers understand Jake’s communication cues, or teaching the Educational Assistants how to safely transfer Jacob from his wheelchair to his walker, my focal point is on ensuring that Jacob is surrounded by competent, caring nurses who constantly monitor his breathing and heart rate. At present, Jacob requires the services of a registered nurse around the clock, seven days a week. His care is complex and the only consistency is how inconsistent and unpredictable his breathing might be. We are on constant high alert and often need to act swiftly to help my son clear his airway. At times, his care is so intense, more than one person is needed to help with the interventions he sometimes requires.

Instead of making sure Jacob is ready at 8 a.m. when the school bus used to arrive, early mornings are spent removing Jake’s noninvasive ventilation (BiPAP), suctioning his airway (which, at times, can take over an hour and a lot of oxygen) and reviewing the nurse’s notes from the overnight shift to stay abreast of any subtle, or not-so-subtle, changes in his baseline level of care.

For years I fought relentlessly against the giant beast that is the Toronto District School Board to make sure Jake received the education and social stimulation he deserved and craved. I did this with a feeling of desperation – roadblocks winded me like a kick in the gut. I didn’t want Jacob to languish in a class or school that didn’t challenge his intellectual abilities, even for a brief period of time. Every delay felt like a physical blow because I knew how PMD would eventually ravage his body. I was aware that one day the degenerative disease would wreak havoc on my son and seep him of the strength to go to school and be surrounded by the chaos of teenagers. That’s what prevented me from giving up. I wasn’t willing to compromise on his education, even when faced with what looked like insurmountable odds.

I was determined for him to have as much as he could for as long as his body would let him have it.

As Jacob recovers from a series of respiratory infections that have left his lungs weak and vulnerable, he cannot go to school. Until he regains his strength and stamina, he should not be surrounded by kids in the hallway, it is unsafe for him to play with a friend who has a runny nose or converse with a classmate with a scratchy throat. I am hopeful that this is a temporary situation and with time he will rebuild his immune system.

In the meantime, I am working on finalizing the details for “home instruction” where a licensed teacher will come to our house to teach Jacob the things he is missing in class. And as the teacher will approach our front door and reach for the doorbell, he or she will see the sign posted in our window that states that a medically fragile child is inside.

What a difference a year makes.

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Why Facebook Is My Lifeline

I love Facebook.

It’s fun to see photos of smiling faces and breathtaking views from mountain tops at sunrise. I occasionally enjoy seeing a photo of a glistening filet of salmon nestled on a bed of artistically arranged kale and quinoa posted by a proud home-chef. And sometimes I chuckle at a cartoon posted by a “friend”.

But Facebook, to me, is more than a social connection with people I thought I’d never hear from again. It’s more than a chance to peek into the lives of former classmates or colleagues. And it’s a great deal more than laughing hysterically at auto-correct text bloopers.

As a mom of a child with a severe disability, it is my salvation. It is my connection to a world of people who have an understanding of a current challenge I am facing, parents who have experienced something I am struggling with and families who have tried various solutions to obscure problems only those with medically fragile children can relate. It is also a forum to vent to people who “get it” because they have been where I am.

Thanks to Facebook, I have met other parents of children with Pelizaeus-Merzbacher disease (PMD) who hate the disease as ferociously as I do but adore their sons with an equal amount of love. Because of Facebook, Jacob has “PMD brothers” all over the world.

Jacob was born in 2002, a couple of years before Facebook was invented. At the time, Google was in its infancy and my medical research was only minimally performed online. Medical journals were not widely available in electronic format and information exchange was mostly over the telephone and only occasionally through email.

I did not know anyone who had a child with challenges. I did not know anyone who was fed by a tube surgically implanted into his stomach because he couldn’t swallow. I did not have a chance to converse with other mothers who shared my sense of failure for not being able to nourish their children in the usual way.

In 2002, a suction machine was a scary piece of equipment and I was terrified to use it. My hands trembled as I tried to snake the plastic tube into my son’s nose and down his throat to vacuum out the mucous that impaired his breathing. I would have loved to share my fears with other parents who understood what I was feeling. Maybe they would have been able to help me overcome my anxiety around that dreaded but lifesaving appliance.

I didn’t know anyone who had a child with such intense needs that he couldn’t be left alone, even for a few minutes while he was asleep. I had no idea whether I would ever adjust to the new life I was catapulted into, and I had no clue how to figure it out.

Those early days were scary, depressing and isolating. Over time, I developed the patience and skills to comfort my son when he was in agonizing pain and screaming relentlessly for hours. Eventually I conquered my fear of the feeding tube and was even able to replace a broken tube in less than a few minutes. But it took years before I was comfortable with the suction machine, something I use for hours every day at this point in Jacob’s life.

I can’t help but wonder whether it would have been a bit easier if I knew others in similar situations when Jacob was younger. I think about how things could have been different if I had a network of experienced parents with whom I was able to share my fears and celebrate my son’s inchstones (moms like me don’t celebrate milestones). I knew there were others in similar situations but I had no way of meeting them.

As the years went by, technology started developing in ways that opened up the world to me. It started with a Yahoo chat group for families who had kiddos with PMD. It was the first online resource I encountered where people gathered for support, feedback and suggestions related to the challenges involved in raising a child with PMD.

I recently realized that Facebook is my invaluable resource. When Jacob was having feeding issues, I posted my questions in a Facebook group for Tubies. When I had a question about Jake’s scoliosis, I posted it in another group. Of course doctors have this information and always answered my queries to the best of their abilities, but getting a perspective from people who are living the answers has its benefits. Hands-on, real life experiences are key for moms like me. I access this information and add it to what I already know. It helps me make the informed decisions that I have to in order to care and advocate for Jacob.

The past 300 days have been the hardest of my life. Jacob was in the hospital for 237 of those days. He spent over seven weeks, spread out over four visits, in the ICU with machines helping him breathe. And through all those excruciatingly long and harrowing days, I was never alone. Even when I was the only person sitting by his bedside, I had a gigantic network of people who understood what I was experiencing and people who were only a message away. I constantly received messages of support, read snippets of their experiences and was comforted when I saw a new “like” to an update. (As an aside, I wish there was a “dislike” button for heartbreaking posts.)

Facebook is my lifeline to the world of medically fragile and special needs children.

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