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.”
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.
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.
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
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.
– See more at: http://hermagazine.ca/why-facebook-is-my-lifeline/#sthash.zy90x5vv.dpuf
The Times of Israel picked up the story and interviewed Marcy:
Friends and family lift Jacob Trossman as they dance at his bar mitzvah celebration in Toronto on May 18, 2015. (Nechama Laitman Photography)
Jacob Trossman celebrated his bar mitzvah in Toronto last month together with his family and friends. In many ways, his was a typical Jewish coming of age ceremony. The bar mitzvah boy donned a tallit (prayer shawl) for the first time, prayers were uttered, and the Torah was read. However, there was one major way in which Jacob’s transition to Jewish adulthood was unique. Unable to move or speak, Jacob recited the blessings for his first aliyah to the Torah by blinking.
Afflicted since birth with Pelizaeus-Merzbacher disease (PMD), a degenerative central nervous system disorder, Jacob used a technology called a Blink Switch to activate a computer to play a recording of the blessings read before and after reading the Torah.
“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,” Dr. Tom Chau, senior scientist and vice president of research at Holland Bloorview Kids Rehabilitation Hospital, explained in an interview with the Canadian Jewish News about the technology developed at the hospital’s PRISM (Paediatric Rehabilitation Intelligent Systems Multidisciplinary) lab.
There was never any question in Jacob’s parents’ minds that their son would have a bar mitzvah ceremony, despite the severe deterioration to his coordination and motor abilities caused by PMD, a disease that is related to multiple sclerosis and belongs to a group of gene-linked disorders known as the leukodystrophies. These diseases affect growth of the myelin sheath wrapped around and protecting the nerve fibers in the brain. PMD is inherited as an X-linked recessive trait, meaning that the affected individuals are males and their mothers are carriers of the genetic mutation. It is no more prevalent among the Jewish population than among other ethnic or racial groups.
Jacob Trossman with his sisters Sierra (left) and Jamie, and parents Andrew Trossman and Marcy White at his bar mitzvah ceremony in Toronto on May 18, 2015. (Nechama Laitman Photography)
“The only question was what form it would take,” Jacob’s mother Marcy White told The Times of Israel about his bar mitzvah.
Last summer, family friend Hannah Sandler, who was becoming a bat mitzvah herself, offered to learn to chant Jacob’s Torah portion, in addition to her own. The idea would be for her to record herself chanting Jacob’s portion and upload the file to a computer so that Jacob could activate it during his ceremony using a customized communication technology he controlled with slight movements of his head. Jacob and his family were touched by Hannah’s offer, and they set Jacob’s bar mitzvah for this past Monday, May 18.
But then Jacob became very ill late last fall and was hospitalized at The Hospital for Sick Children (referred to by locals as Sick Kids) for a month. He got sick again in January and had to return to the hospital, where he spent three weeks in the Intensive Care Unit.
“Jacob was having serious breathing issues, so the bar mitzvah was not top of our mind at that point,” White said.
Rabbi Adam Cutler of Beth Tzedec Congregation had been meeting with Jacob, who has liked learning Hebrew and Bible stories, in preparation for his bar mitzvah ceremony.
“Like all b’nai mitzvah celebrations, we were hopeful that the service would take place at our synagogue. But as the day approached and the likelihood of Jacob being well enough to celebrate at Beth Tzedec remained low, a decision was made to do the service at Sick Kids, where Jacob was a patient,” Cutler told The Times of Israel.
White and her husband Andrew Trossman were not initially pleased about having the ceremony at the hospital and thought about postponing it. However, the family agreed to hold it in a bright, glass-walled event room in Sick Kids’ new research tower after Jacob’s doctors told them not to push the milestone off.
“They told us, ‘You don’t know what the future holds. This will be the time around Jacob’s 13th birthday, so do it now,’” White said.
As the date approached, technicians from Holland Bloorview came to Sick Kids to train Jacob, who had previously been able to activate a communication system pre-programmed into an iPod with slight movements of his cheek, to use the new Blink Switch. It was also decided that Hannah, rather than recording Jacob’s Torah portion, would chant it in person at the ceremony. Jacob’s 10-year-old twin sisters Sierra and Jamie prepared to deliver a d’var Torah, a speech about their brother’s Torah portion.
Jacob Trossman’s friend Hannah Sandler (right) prepares to chant from the Torah as he recites the blessings using a Blink Switch as his parents (center) look on. Toronto, May 18, 2015. (Nechama Laitman Photography)
“Our philosophy at Beth Tzedec is to accept every child as they are and to challenge them Jewishly. For many typical kids, they participate in our bar/bat Mitzvah program, learn to read Torah and Haftarah and write a d’var Torah. For others, that approach is not appropriate. We want to make sure that each child is challenged, learns, and feels good about the process leading up to their becoming a Jewish adult. While Jacob’s service was on the one hand unique, it was at the same time exactly what we do for every child who is approaching bar or bat mitzvah,” said Cutler.
White said she was “very concerned” about the bar mitzvah as May 18 grew nearer. What kept her up at night were not the usual worries about catering, seating plans or decorations.
“Would he be able to sit through the whole ceremony and the party? Would he need to be suctioned? Would he turn blue?” she worried.
‘Jacob has taught them to slow down. He’s taught them to be present in the moment with him’
Jacob, who had attended a regular public school with the help of two special needs assistants and a nurse until his recent bout of illness, was having breathing troubles two days before the ceremony and spent all day in bed the next day. It turns out Jacob had been conserving his energy, and on the day of his bar mitzvah, he was “perfect,” according to his mother.
“Because of Jacob’s health, we were concerned that he may lack the stamina to sit through a full service. It was, as it turned out, an incorrect assumption. Jacob was full of energy for the service and the party to follow,” said Cutler.
White, who has written a book about Jacob and started a foundation to further PMD research and patient advocacy, asked each of the 120 guests (all whom Jacob personally knew) to contribute to a special book she was putting together for her son. She asked them to write what they had learned from Jacob over the years.
People noted many things about Jacob, including his wonderful sense of humor and his constant smile despite the pain and challenges he has faced.
“One of the main things people expressed was that Jacob has taught them to slow down. He’s taught them to be present in the moment with him,” White said.
by Renee Ghert-Zand Renee Ghert-Zand is a reporter and feature writer for The Times of Israel.
My son Jacob cannot speak. I am his voice. I am his biggest advocate and will fight as hard as I can to get him what he needs.
My ongoing challenge is convincing people that Jacob understands what goes on around him and reminding people that there is a person inside his physically challenged twelve year old body. And recently, one of Jacob’s sisters decided she was going to make sure people know that kids like Jake deserve better treatment.
At ten months old, Jacob was diagnosed with Pelizaeus-Merzbacher Disease (PMD), a degenerative neurological disease that impairs his ability to sit, speak and eat. The first few years of Jacob’s life were filled with tests and heartbreaking results. We were told that he would never walk, swallow or live to be a teenager. I would enter each doctor’s office with a knot in my stomach, prepared for the inevitable crushing news about something my son would not be able to do.
As the years went on, I grew accustomed to listening to the various prognoses with one ear.
Although I do not have a recognized medical degree, I have earned a PhD in Jacob. I understood that his disease is rare and most medical professionals have not encountered a PMD patient in all their years of practice. I knew their gloomy reports were not accurate, but what did I have to do for them to listen to me?
When Jacob was one year old, he had electrodes placed all over his tiny head, wires transmitting his brain waves to a computer. I held my terrified baby on my lap, carefully supporting his wobbly head, while he screamed as images and lights were flashed on the screen inches from our faces. The test was conducted to measure how efficiently he processed visual information.
Several weeks later I sat fidgeting on a hard chair in the sparsely furnished office that doubled as an examination room while I waited for the doctor to explain Jacob’s visual acuity. As the pediatrician opened Jake’s beige file, filled with three inches of medical reports, her eyes filled with tears and her voice lost the confident, professional tone. She gently explained that “the tests reveal that Jacob cannot see.” I was stunned and did not know how to respond. I knew he saw me because he smiled when I positioned myself in front of his often-expressionless face. I was told that my curly haired son was blind. The test was wrong, but who would listen to me?
As Jacob grew, he struggled.
His various test results were inconsistent with what I believed he knew. If he really was blind, why would he scream in fear every time a giraffe appeared on television during the Baby Einstein video? If he didn’t understand anything, why would he start to squirm in fearful anticipation shortly before the scary giraffe portion of the movie?
When my little guy was sixteen months old and a mere twelve pounds, I enrolled him in a program at a school for children with special needs. The twice weekly Infant Intervention program consisted of physio, occupational, speech and music therapy. These mornings were filled with activities tailored to challenging Jacob’s abilities, helping him develop new skills and assessing his needs. Everyone in the room knew to avoid bringing a yellow toy close to Jake because that colour elicited ear-piercing screams from him that would only subside when the item was removed from his line of sight. And according to the doctors, Jacob was blind.
As the years passed, it was easy for a professional to administer a test and tell me that Jacob does not comprehend, that his ongoing screaming during the exam was evidence of an uncooperative, uncommunicative child. But those who spent time with Jacob knew that his infectious high pitched giggle when he heard the punch line of a joke was a constant reminder that my son understands what is happening around him.
He does not like to be treated as if he does not know what is going on.
When a teacher administered a standard assessment suitable for toddlers to six year old Jacob, he became annoyed that she was ignoring his true abilities. He purposely gave false answers, as if to say, “Of course I know that the object in your hand is a pencil but since you insist on asking me such a ridiculous question, I will tell you that it is a truck.” That is why he started laughing after each incorrect response.
As Jacob grew, so did his comprehension. He laughed at the punch-line of funny (and some not-so-funny) jokes, his yes and no responses became more consistent and he learned how to use a specially adapted communication device to actively participate in his world.
One of my daughter’s pet peeves is hearing people talking to her big brother as if he were a small child.
Jamie’s fists clench and her cheeks redden with the sheer effort of holding her tongue as she listens to well-intentioned people talk in the loud, slow and simple language often reserved for toddlers and aging grandparents.
Our family is far from typical. Sierra and Jamie have said that it’s not easy having a sibling with special needs. Our family does not travel together, we rarely go to a restaurant as a table of five and we’ve only been to one movie with Jacob. But they will acknowledge that they love their brother and enjoy playing with him, reading to him and including him in their play dates with their friends.
Last week, as Jamie, Felix (Jacob’s Skilled Companion dog) and I were leaving the hospital after visiting Jacob, we noticed a girl in a wheelchair. This little girl, who was around Jamie’s age, was steering her wheelchair in circles and was waving her right arm in the air excitedly. Realizing her exuberance was because she spotted Felix, we walked over to the girl and her mother. After asking her if she wanted to play with Felix, Jamie helped her touch Felix’s head and assisted her in giving our dog a little snack.
As we walked away, Jamie said she hated the way people were staring at the girl as she was flailing her arms. She wondered why they don’t realize that she is just like any other kid. The more we talked about it, the stronger her conviction became about wanting to let kids know that just because someone looks different, it doesn’t mean they are any less of a person. They have the same thoughts and feelings as someone who is able-bodied. She vowed to do something significant to raise awareness about the similarities between kids with disabilities and “typically-developing” kids.
Look out world, Jamie is a very determined ten year old on a mission!
This post was originally published on hermagazine.ca
I hate PMD.
On March 21, 2003, I was told that Pelizaeus-Merzbacher disease (PMD) was the cause of Jacob’s assorted medical issues. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two months ago because the disease had weakened his immune system to such a great extent that a cold required him to have mechanical assistance to stay alive, my hate relationship with PMD was in full swing.
These days, I can’t think of PMD without my heart twisting with loathing. This is hate to the extreme.
When Jake was hospitalized for the first three months of his life, I repeatedly said it wasn’t fair. Why was he, an innocent newborn with a whole life of possibilities ahead of him, suffering such excruciating pain and struggling so hard to breathe? It didn’t take long for me to realize that the saying life isn’t fair, often used half-heartedly by my parents when I complained as a teen about not being allowed to go a party with my friends, is 100% accurate. Life isn’t fair and my son’s disease is proof of it.
Life’s cruelty and my abhorrence of PMD came crashing into our house when I had to explain to my twin daughters that Jake’s PMD was worsening.
The fact that Jacob has PMD is wrong. The rapid change in his health is completely undeserved. And the fact that Jamie and Sierra have to experience all this alongside their brother is unreasonable in its heartlessness. At ten years old, Jamie and Sierra are forced to witness this unfairness every day.
When Sierra and Jamie were six years old, they gave their friends an impromptu genetics lesson by explaining the inheritance pattern of the disease that affects their big brother. They’ve always known that Jacob’s care is difficult and there are nurses in his room every night to ensure his medical safety. But until recently, they didn’t realize that PMD is a fatal disease and that despite our efforts at researching a cure, their brother might not live long enough to benefit from medical breakthroughs.
I’ve learned that people adapt to changing conditions. I remember saying that I wouldn’t be able to stick a tube down my son’s throat and suction out the mucous that was blocking his airway and causing him to turn blue. Now, I do this every day and my hands remain surprisingly steady during the process. When Jamie used to hear the rumble of the suction machine, she would stop what she was doing and put her hands over her ears to block out the awful sound. But, last week, as I was threading the tube down Jake’s airway, Jamie held her brother’s hand and talked him through the entire procedure, even wiping away the tears that pooled at the edges of his eyes. There was so much unfairness in that scene, but also a ton of love.
My daughters experience things on a daily basis that youngsters should not have to bear, and that is deplorably unfair. They are aware of the frailty of their brother’s lungs, they know how to read his oxygen monitors and understand what numbers indicate a dangerously high heart rate. They dissolve into tears when he needs to go to the emergency room because, in their experience, that is the start of a long hospitalization and a complete disruption of their lives.
Caring for Jacob is extremely challenging and scary at times. He can go from breathing quietly to sounding like he is drowning in his saliva in seconds. The level of oxygen in his blood can plummet from a safe 98% to a dangerously low 77% in the blink of an eye. The doctors and nurse practitioners have taught me how to care for him and when to intervene. So for the most part, I know how to “manage” my son’s precarious medical needs. I don’t like it, but I am adjusting to the new level of care that Jacob requires.
Late at night, when the house is quiet, save for the humming of the oxygen concentrator in Jake’s room, what keeps me awake are thoughts of how PMD is affecting my twin daughters.
Prior to their births, I read a lot about siblings of kids with special needs. Everything I came across consistently stated that kids raised in homes with atypical children grew into empathic, sensitive and caring adults. I do believe that, and have already witnessed several examples of my daughters’ concern for the feelings of their friends. They display a level of compassion beyond their years.
Sierra and Jamie are forced to cope with things many adults are unable to fathom. My heart shatters when they come home from school crying because their friends don’t understand what it’s like to live with a disabled brother whose health is so fragile. I have to explain that most of their friends aren’t emotionally equipped to support them as they express their fears. And that, too, isn’t fair.
How do I hold it together when they ask questions like“why doesn’t home feel like home anymore?” or “why does my life have to be harder than everyone else’s at school?” or “will a cure for PMD be discovered in time for Jake?”
These are questions about which little kids shouldn’t have to wonder, and issues from which I desperately wish I could shield my daughters. But I can’t. So we talk. In the car, on our way to an activity, we talk about why we don’t travel like their friends families. And at dinner, we talk about whether the auditorium where the girls are performing in a play is wheelchair accessible so Jacob can come and watch. And late at night, in the darkness of their rooms, we chat about how unfair it is that their brother has PMD, that he can’t tell us exactly what he’s thinking or feeling and that they are scared to be alone with him in case he stops breathing.
We love Jacob with every fibre of our beings. But we hate PMD.
This post was originally published on hermagazine.ca
By Marcy White November 25, 2014
The most terrifying words I’ve ever heard were spoken 21 days ago, shortly after I pressed the red Nurse Call button beside my son’s bed in his hospital room. It was around 9 a.m. on the second morning of Jacob’s recent hospital admission for breathing-related issues.
I was sitting on his bed when he started struggling to breathe. His vitals reflected on the monitors looked strong, but something wasn’t right. I pressed the Nurse Call button because I wanted to be reassured that Jacob was okay.
The nurse assigned to my son was just coming on for her shift and had not met him prior to this moment. She took one look at Jacob and knew he was not breathing well. She administered some medicine via a pressurized mask and called for assistance. When I noticed her hands shaking while she was assembling the mask, I was surprised – I thought maybe she was new to her profession and this was one of her first patients. It didn’t dawn on me that Jacob was really in trouble.
Before I realized what was happening, there were at least six but possibly more, yellow-gowned medical personnel surrounding Jacob’s bed and standing in the doorway. The staff was dressed like minions because precautions were being taken in case he had a contagious virus (a common practice until anything contagious can be ruled out) and everyone looked the same. I didn’t realize that there were practitioners from the Critical Care Unit (CCU), Respirology, Respiratory Therapists and Complex Care huddled in the room assessing my son’s condition. I still don’t know who some of the people were. It was surreal.
I then heard the words that will remain etched in my brain like a key scrape on the side of a brand new car: “There is no air entry, I’m about to call a Code.”
A woman stood near my son’s head holding a mask over his mouth and nose. Someone else was squeezing a balloon-shaped device at the end of the tube attached to the mask. I leaned over the edge of the bed and rubbed Jacob’s arm as tears ran down my cheeks. I whispered to him that one day soon he would laugh so hard when he hears the story about how he scared so many people.
I moved away from the bed as the group of yellow-gowned people readied Jacob and his bed for the transfer to the CCU.
At some point, my friend showed up and helped me gather Jake’s belongings and wheelchair. She saw to it that all his “stuff” was moved to this new room. My singular focus was walking next to my son, trying to ensure he knew I was by his side.
I can’t remember what transpired next but I do recall thinking I was glad my husband was already on the airplane on his way home from his meeting in Europe. The last text I sent him before he boarded was Jake is sleeping well, he is comfortable and quiet.
Eventually, Jacob was settled into the CCU with a machine breathing for him and monitors beeping whenever his numbers dropped too low or rose too high. To say it was scary doesn’t adequately describe the feeling of helplessness I experienced when trying to find my 12 year old boy’s face almost completely hidden behind a huge mask. His eyes registered abject terror as the sound of the breathing machine hissed on each inhale and every exhale.
The experience was horrifying. We were forced into discussions that parents shouldn’t have to consider. Our daughters learned things about PMD that nine year olds shouldn’t know.
Three weeks after that terrifying morning, Jacob has recovered from what turned out to be a virus that would affect most people like a bad cold but because of his PMD-related challenges, almost clobbered him. He is still in the hospital but is getting stronger.
Throughout this chapter in our family’s history, we saw some wonderful instances of love and support. At times my phone was beeping almost non-stop with messages of encouragement, well wishes and offers to help. Our daughters’ days were busy and fun-filled by friends who wanted to ensure that Sierra and Jamie had pleasant things to focus on. Our fridge was stocked with fruits, vegetables, soups, meals, muffins, cookies and so much more. A good friend made school lunches for my daughters, and another friend coordinated their weekend plans so Andrew and I could spend the entire time at the hospital by Jacob’s side.
Since Jacob’s early struggles, I have been a fan of the adage: It takes a village to raise a child. Over these past few weeks, I realized that I am very lucky to be part of such a loving and caring little world of family and friends.
– See more at: http://hermagazine.ca/jacob-in-the-hospital-it-takes-a-village/#sthash.jbUy6UiO.dpuf