Living with a C2 Spinal Cord Injury. Lately I just feel the need to share what life is like with those who are living with or who may be caring for someone with a Cervical Spinal Cord Injury.
When my accident first occurred 20 years ago and Braden was injured, I remember a minister coming up to visit Paul, Braden & I. The minister who married Paul and I actually became a wonderful support to us and would come to the hospital just to pray with us. I need that, at times that was all I needed. Anyways I can recall during one visit him saying too me, "Well you're gonna have to care for him regardless for the next 5 years, its just going to be in a different way now". He nailed it, although it was only a statement probably one he had planned to say to me. It really changed the way I looked at becoming a caregiver to a C2 Quadriplegic child.
I was mommy first, and love always prevailed over any god given situation that may have landed on our laps. Whether it be pneumonia, lung collapse or even just a common cold. Something that would have required a simple cough syrup or decongestor in a healthy child would continue on into full blown ICU visit. Complete with life support, IV antibiotics and chest physiotherapy with postural drainage and suction.
I was always a mommy, endless snuggles, kisses and hugs but when treatment was needed the therapist came out.
Parenting a child with C2 Spinal Cord Injury was certainly challenging but like that minister said, I would be parenting him regardless. Even though we were given extra duties during his childhood being a mommy was always first.
Let me tell you how things have changed being a caregiver to an adult (child) with a C2 Spinal Cord Injury.
Most days I'm a caregiver first, and a mom second.
(In my heart, I'm always mom)
When he became an adult so much changed. It wasn't about fighting pneumonia any more, or just focusing on physiotherapy it became about many other things.
Much more scarier things.
Let's take a look at the things those with Spinal Cord Injuries need to be aware of...
Autonomic dysreflexia. This scares me too death, potentially life-threatening medical emergency that affects people with spinal cord injuries at the T6 level or higher. For most people, AD can be easily treated as well as prevented. The key is knowing your baseline blood pressure, triggers and symptoms.
Autonomic dysreflexia requires quick and correct action. AD can lead to stroke. Because many health professionals are not familiar with this condition, it is important for people who are at risk for AD, including the people close to them, to know all about it. It is important for at-risk people to know their baseline blood pressure values and to be able to communicate to healthcare providers how to identify potential causes as well as manage an AD emergency.
Unfortunately this condition can come on very quickly, so consistent supervision is necessary.
Some of the signs of AD include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea and a slow pulse (slower than 60 beats per minute). Symptoms vary by individual; learn yours.
Considering the severity of this condition may I stress very loudly this is one reason why I am available to Braden at all times.
When you have to live like this or with someone who may be threatened by this condition then maybe you won't be so quick to judge where my time is placed.
Here's how an unaffected bladder works:
Urine, the excess water and salts that are extracted from the bloodstream by the kidneys, is piped down thin tubes called ureters, which normally allow urine to flow only in one direction. The ureters connect to the bladder, which is basically a storage bag that does not like pressure.
When the bag is full, pressure rises and nerves send a message via the spinal cord to the brain. When one is ready to empty the bladder, the brain sends a message back down the spinal cord to the bladder, telling the detrusor muscle (the bladder wall) to squeeze and the sphincter muscle (a valve around the top of the urethra) to relax and open. Urine then passes down the urethra to exit the body.
It is a rather elegant process of muscle coordination just to go pee.
After paralysis, however, the body's normal system of control goes haywire; messages can no longer pass between the bladder muscles and the brain. This leads to high bladder pressures, incontinence, incomplete emptying, and reflux -- along with recurrent bladder infections, stones, hydronephrosis (kidney distention),
Most people with a Spinal Cord Injury use indwelling catheters which allows the person to empty their bladder. However with Braden having an incomplete spinal cord injury at a C2 level, he does have feeling when needed to go to the bathroom. He does however have some residual effects leaving him with some urinary problems.
Due to his lack of physical ability to toilet himself, he does use outer catheters that are not invasive. This catheter is connected to a 900ml leg back. Yes this makes life easier for us, it is still very important to stay available to Braden at all times due to needing to empty is leg bag. You see, if he doesn't get the leg bagged drained when full, then he can get himself into some serious medical problems one being Autonomic Dysreflexia. If the urinary bag is full and he is needing to empty his bladder again, where is the urine going to go? He will get backed up and the pressures from not being able to empty his bladder will cause severe pain and discomfort.
Again, for this reason my job is too remain close and available to him at all times. Until we have fulltime assistance for him, this will remain my job. IF by chance you want time with me, by all means find someone to cover my job. Then please pay them according to the pay scale of PSW's or RPN's. Thank you for your help!~
Bowel accidents happen.
Those living with Spinal Cord Injuries sadly have bowel problems that can effect their whole day.
The best way to prevent them is to follow a schedule, to teach the bowel when to have a movement. Most people perform their bowel program at a time of day that fits with their lifestyle. The program usually begins with insertion of either a suppository or a mini-enema, followed by a waiting period of approximately 15–20 minutes to allow the stimulant to work. After the waiting period, digital stimulation is performed every 10–15 minutes until the rectum is empty. Those with a flaccid bowel frequently start their programs with digital stimulation or manual removal. Bowel programs typically require 30–60 minutes to complete. Preferably, a bowel program can be done on the commode.
Two hours of sitting tolerance is usually sufficient.
But those at high risk for skin breakdown need to weigh the value of bowel care in a seated position, versus a side-lying position in bed.
Constipation is a problem for many people with neuromuscular-related paralysis. Anything that changes the speed with which foods move through the large intestine interferes with the absorption of water and causes problems.
For almost 20 years we were fortunate that Braden had the ability to feel when needing to have a bowel movement. However over the course of those 20 years consistent constipation took a toll on Braden and he did end up with some very serious health problems.
When we were dealing with bathroom routines, it was something that would take up too two days for him. We lived some VERY challenging years, where bowel movements became the biggest stressor in our family life. Braden actually almost lost his life eventually from poor bowel conditions. We in Cambridge DO NOT have the proper medical professionals to deal with a person who has a C2 Spinal Cord Injury. This left him vulnerable to the system and Paul and I lost and confused.
We had a very scary moment in life a few years back, Braden did almost die. He came through surgery with a colostomy. Initially they were going to reverse it, once he healed from the surgery and all the damage done by years of constipation. It didn't take long to realize the how much easier life was about to get with this new appliance added to Braden's body. It was a blessing in disguise.
Deep Vein Thrombosis
People with spinal cord injury (SCI) are at particular risk for deep vein thrombosis (DVT) during their acute hospital course. Deep vein thrombosis is a blood clot that forms in a vein deep in the body, most often in the lower leg or thigh. This can result in a life- threatening danger if the clot breaks loose from the leg vein and finds its way to the lung, causing a pulmonary embolism.
Someone who may be sitting all day as well has an increased chance of DVT. Its important for those living with SCI to have continued therapies to decrease that risk. Many times throughout the day range of motion should be done to help increase blood flow, circulation, prevention of pressure ulcers and to relieve muscle tightness or spasticity.
This is my job and I do need to be available to him when he feels sore or tight. Range of motion is done periodically throughout the day. He has always had that done, even during the school years. I had someone hired to attend school with him so he could have continued therapy throughout the day.
Again this today is my job, and very much a part of my daily duties. SO if you are wanting my time away from my job please feel free to send someone in who can fill that job requirement and don't forget a private kinesiology therapist charges anywhere between 35-50.00/hr. If you don't mind paying for that too, again Thanks~
Depression is common among people who are paralyzed, but it's not normal -- becoming discouraged, grief-stricken or sad is normal, but depression represents a condition that is a health problem unto itself. Most forms of depression, however, can be treated.
Depression also affects health and wellness: People with a disability who are depressed may not look after themselves properly. They may not drink enough water, take care of their skin, manage their diet. It affects one's social world sometimes friends and families are tuned out.
Thoughts of suicide often occur when things look most hopeless. In spinal cord injury, risk is highest in the first five years after the injury.
Many factors contribute to depression. These may include the effects of disability -- pain, fatigue, changes in body image, shame, and loss of independence.
So again the next time you want to pull me from my day please make sure its not on a bad day. Just because we choose to show our happy selves to the world doesn't mean it comes easy. If I am away from my job on a down day, how am I being available and helpful to my loved one?
Remember that please!
You will also never be given a reason or rhyme as too why I cannot leave my place of work, "why" you may ask?...because its none of you business. I have protected his/our privacy for 20 years doing the best I can to give him his right to peace. If there is something you need to know then we will tell you, if not don't question anyone living this life. Just trust there is always a good enough reason. |
Exercise
Once again this is the most important part of anyone living with a SCI daily/weekly routine. There's this thing we do everyday and I believe most people living with spinal cord injuries follow the same routine. Exercise and physiotherapy has always been and always will be as a mom my most important activity for Braden. Daily...if I had my choice I would have him working each day for at least an hour on physical rehab. When he was young it was a lot easier, it was just part of his daily routine and he didn't know anything different. When he became an adult his views on therapy changed, I will never stop pushing him to do more.
Every morning we do range of motion (stretching his limps to loosen the muscles), and if through the day he has any kind of pain we again go to the mattresses and do some stretches. Its important, to me the most important.
There are SO many elements to caring for someone who has a spinal cord injury. You need to remember they have an injury. When someone is born with a physical disability their body is already formed to suit the needs of their challenges. NOT that it makes It any easier, and it certainly doesn't mean their needs are different. I am not taking away from anyone who has/is suffering from a physical disability. All I am saying is that when a person has a C2 Spinal Injury, its a life long goal to rehabilitate as much as you can. Especially with a level as high as a Cervical 2, that kind of injury is catastrophic. It effects your whole body, and every system in it.
Eating well is even more essential for persons who are paralyzed. Because of changes that occur to the body after trauma or disease, it's more important than ever to understand the role nutrition plays in maintaining health.
After a spinal cord injury, most people lose some weight. The injury puts stress on the body as it uses its energy and nutrients to repair itself.
Stress ramps up the metabolic rate; the body burns calories faster. Moreover, many newly injured people are not able to eat a regular diet. As muscles atrophy, the weight loss continues -- for about a month. Later, the problem isn't too few pounds, it's too many. People living with SCI are more prone to inactivity, and thus don't burn calories. That's the pathway to obesity.
My experience with nutrition is a bit different as Braden was only a baby at the time of his injury. He was put on a high caloric diet once his trach was removed. We left the hospital with strict guidelines to "fatten" him up any way we could. We remember being in ICU with Braden, and he wasn't taking in enough calories. This was actually one of the most difficult parts of our journey. Once he was injured, with is injury being so high
he lost his will to thrive.
You can not force feed anyone, not alone a 2 year old who is fighting for Autonomy from his mommy. Fighting to be independent yet not able to do anything on his own, we had geared up for a small war every single time we sat down to eat a meal.
I laugh when I hear parents talking about their children's diets, how they are not letting their kids eat fast food, things like MacDonalds. Let me tell you when your child is trying to survive lying in an ICU hospital room and they refuse to eat the hospital food. It's amazing how quickly you'll run to grab a cheeseburger happy meal inorder for you medically fragile child to reach his calorie count for the day.
Still today one of my biggest parenting/caregiving challenges is making sure he continues to hit his calorie intake. He is grown up enough to worry about this himself, and he does take nutrition very seriously. He is actually really good at watching his weight and trying new things to help with his calories. But he still doesn't have the will to thrive. SO that can be difficult.
Chronic Pain
Pain is a signal triggered in the nervous system to alert us to possible injury. Acute pain, the result of sudden trauma, has a purpose. This kind of pain can usually be diagnosed and treated so the discomfort is managed and confined to a given period of time. Chronic pain, though, is much more confounding. It is the kind of alarm that doesn't go away and is resistant to most medical treatments.
Pain is a complicated process that involves an intricate interplay between a number of important chemicals found naturally in the brain and spinal cord. These chemicals, called neurotransmitters, transmit nerve impulses from one cell to another.
There is a critical lack of the essential inhibitory neurotransmitters in the injured spinal cord. This may "disinhibit" spinal neurons that are responsible for pain sensations, causing them to fire more than normal. This disinhibition is believed to be the root of spasticity, too.
Following injury, the nervous system undergoes a tremendous reorganization. The dramatic changes that occur with injury and persistent pain underscore that chronic pain should be considered a disease of the nervous system, not just prolonged acute pain or a symptom of an injury.
Repositioning and sometimes cold/heat therapy treatment is needed throughout the day for pain. So there again, really...if I need to explain how leaving during the day could effect his day and his health or even comfort than you're not that bright~
Respiratory
As we breathe, air is brought into the lungs and into close contact with tiny blood vessels that absorb oxygen and transport it to all parts of the body. At the same time, the blood releases carbon dioxide, which is carried out of the lungs with exhaled air.
Lungs themselves are not affected by paralysis, but the muscles of the chest, abdomen and diaphragm can be. As the various breathing muscles contract, they allow the lungs to expand, which changes the pressure inside the chest so that air rushes into the lungs.
This has by far been the biggest struggle in our lives and in his recovery. His lung health has been the most work, the largest triumphs and the hardest thing to over come. His lung care has taken the most amount of our time, and still continues to dictate pretty much the kind of day he is going to have. We take his lung health the most serious, and is always forever on the forefront of life. Braden does have paralyzed diaphragm that is probably his biggest disability. If he could breath better I know his recovery would have been even better.
This area of life has taken up most of our time, and it continues to add stress, fear and uncertainty to our life.
I recommend you do not come at me when we are having a bad breathing day, I dare you too. You will see a side of me that you never knew ever existed, and I can say with complete confidence no one has had to witness that. Maybe my immediate family has, but not one friend or outside family has had to defend themselves from the lash they'd get. SO again, the next time you want to take me from my job, you better have a registered Respiratory Therapist on stand by. Cause you sure as shit are not qualified or even capable to take on that responsibility.
Sepsis is a life threatening condition that arises when the body's response to an infection injures its own tissues and organs. Sepsis leads to shock, multiple organ failure and death -- especially if not recognized early and treated promptly. In individuals with paralysis/spinal cord injury, an infection might begin as a urinary tract (bladder) infection, pneumonia, or as a wound, pressure ulcer or other infection. If the infection is not controlled locally, it can spread throughout the body. Sepsis is then diagnosed. Septic shock is severe sepsis with a drop in blood pressure leading to organ failure. Both sepsis and septic shock are life threatening. Sometimes sepsis is called blood poisoning or systemic inflammatory response syndrome (SIRS)
Lets go back to you taking me from my day, do you have any idea how many times this past 20 years we have been threatened with a pressure ulcer that could potentially fatal. NO you don't you want to know why? Because its none of your business, we don't need to share every single battle or illness he has fought. We have been very careful to respect his privacy, but with that said for one minute don't you think something like this doesn't have a profound effect on our lives.
Skin Care
People with paralysis are at high risk of developing skin problems. Limited mobility coupled with impaired sensation can lead to pressure sores or ulcers, which can be a devastating complication.
The skin, the largest organ system in the body, is tough and pliable.
It protects the underlying cells against air, water, foreign substances and bacteria. It is sensitive to injury and has remarkable self-repair capabilities. But skin just can't take prolonged pressure. Unrelieved pressure on the skin squeezes tiny blood vessels, which supply the skin with nutrients and oxygen. What's your thoughts on that? You think its a great idea to be away from my job hours on end, especially when he is sitting in a position that's causing him pain and discomfort?
Once again its most important to be available all hours of the day. When someone has a C2 Spinal Cord Injury anything can pose a problem. They are not capable in most situations to correct the situation they are in. REMEMBER??? Paralyzed from the neck down???
Why does it seem that some people think just because I am home during the day with Braden that I am available to come and go as I please? I decided to share this post with you because my feathers have been ruffled and I am just not sure what more I can say to make it completely clear. I am NOT available to leave as easily as some of you are. Making plans for me during the day is NOT easy, having to cancel due to any of those above issues is quite common. So unless you plan on having someone who is qualified to come into my home and take over my job, then don't even think to put any expectation on me.
I am not sure why people don't understand that my day job is an attendant care. I am being paid to be available to ALL his needs. There is NO difference between me doing this job or if we were to bring in a private attendant care. TO them it would be a full time job that they can not leave because they need too. To them it would be considered a full time job and everyone around them would respect that. Just because I don't need to leave my home to do THAT job, doesn't mean its any less of a position that needs to be filled.
Not only is there care demands, lets not forget he has a life that he lives too. Complete with his own jobs, volunteer hours, medical appts., friends, social life, therapy appt. the list goes on and on. Then there is the house duties, laundry, cooking, cleaning...helping with absolutely anything that requires a two handed task.
Now I don't want to come off sounding like he isn't capable of independence. He is one of the best self-directed care people you'll ever meet. He will someday be completely independent from me. Its a choice that I am still doing this job, and when you think its ok to pull me from it I have to fill that void with an outside employee. I then have to pay that person out of my cheque. MY money....how is that fair? Do you employ someone outside of your job to come in and work for you, then take the money out of your very own cheque to pay them? Let's not forget leading up to them working for you...there has to be a training session. That costs too...
We have 4 years until I plan on retiring from this job. We are doing our very best to make it work for all of us.
The reason I say I am more of a caregiver today while working with Braden is because he is an adult. I have to respect his choices. I may not agree or like some of his demands or choices with his care or life, but as a caregiver I need to listen and offer advice when asked. If I throw my mom hat on during some of his care routines, and try to trump him as a mom....he kicks my ass out that door pretty friggin quickly. I have learned that if it wasn't me in there getting him up in the mornings and being available to his daily needs, it would be someone else. If that person were to speak out against him or his ideas in a negative way...they'd lose their job.
It is one of the hardest things for a mother to do, and to be honest I am looking forward to the day I can be just mom. When I am not working in such close proximity of him and we can have a mother/son relationship.
This post my friends is not to be taken in ignorant way, I mean no harm to my family and friends. I just know that many of you do not understand what my life entitles so I wanted to share a glimpse. I am open to discussing anything you may take away from this, I would be more than happy to answer any questions or concerns you may have~
To my family thank you for all you have done over the years to help Paul and I in our times of need. To my friends, thank you for the things you've done and shared in on our journey.
Until tomorrow my lovelies good night and god bless~ xo
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