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~

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

My dear girl…PLEASE always remember this, it has taken me a long time to get my mind around this one~
Never compare yourself to where others are around you. Your plan is different from everyone else. It has been through experiences with your brother that I have come to calm down with “keeping up” with others. I suppose the best test for me related to you was to agree to you not heading off to University this coming September. It was very difficult for me to come to terms with initially as I felt it was more important for you to go straight into University right out of highschool
Realistically I know, you WILL go to school…its not a question of will you go, its just a question of when. I am more than pleased with your choice to wait another year, its not a race my baby. You will get to where you want to be when YOU are ready…not when others are. It doesn’t mean you are any less a student, any less a mature than the person who has chosen to move ahead in their plan..it means you are mature enough to know YOU are not  and that is perfectly fine.
Always remember that their will always be people who want to live their lives on a “schedule”…they want to be maarried by 25 years old, children by 30, career stable by 35yrs…if you have a plan or a schedule in mind and things don’t work out the way you had hoped, promise me..you’ll be ok with that. But always work hard, and never give up on any dream or milestone you hope to achieve. Its not about how fast you get there….it’s just that you do. Life is NOT a race, do not compare yourself to others and do not EVER let someone tell you, you are doing something wrong. It’s YOUR journey….don’t hurry along, enjoy the ride…all the ups, all the downs, the turns and even the stall’s. Live in the moment~ THAT’s important.~

My dear friend, if you are reading this and you happen to be a sibling to a special needs sibling then this post is just for you~
Whether your own parents have expressed this or not I have something to say to you and I think its important for you too hear this.
I can’t voice enough how wonderful and amazing you are, you probably don’t even know it. 
I know how difficult and challenging your life has been through the years, I know you have witnessed some of your friends living lives that maybe you have envied. Trips, snowmobiling, hiking, childhood camps, family snorkling trips, rock climbing, white water rafting and many other adventurous activities that you may have missed out on as a family. People may not have known how difficult it would be for you and your family to attend a catamaran snorkeling trip In the Bahama’s. 
Even though you may have missed out on so many things, please know that all the while you were being raised to become one of the most remarkable person anyone could know. You may have missed out on some parts of your childhood, however you will have had more life experience than many of your peers. 

Let me share with you how I know this;
I know you deal with more than your share. There are many times when your parents have to spend a lot of time away from you. 
You know and understand that they need to take your sibling to a doctor appt. Maybe your sibling has been admitted to the hospital and your parents have to be there for them. That leaves you in the hand of others, probably frightened, confused and nervous. 
I also know that parents spend countless hours on the phone, figuring out issues about your sibling. Or maybe your parents are busy throughout the day caring for your sibling physically, and I know my friend you see this more often than not. 

Your role maybe at times is to stand back, sadly that happens far too often as well. But what I do know is that while you are watching during the chaos you are seeing the love your parents have for your sibling. Unconditional love is being embedded in your heart.

You see the patience your parents have for the situations that are thrown at them daily and that my friend is being planted in your soul.

 

You may not know this but all these little traits are molding you into a pretty amazing person.
I am sure you are aware of how hard your parents are working themselves to be sure you and your sibling are well taken care of. Even though the demand of your sibling takes away much of their time and attention, they are never forgetting you. In all honesty it is you who keeps them going. Its you they see when they get off the phone from a frustrating phone call and when they see you, a wave of love and relief washes over them. Once again they are reminded, to take a deep breath and smile. 

 

Parents are very aware of your efforts in helping with your siblings medical treatments, physical and occupational therapies. How you quietly hold hands with your sibling during any procedures or quickly place an oxygen mask back in the right place. 
It has always been a comfort having you available to place yourself in a room and watch intently waiting for direction on how to assist with care. You do such a wonderfully grown up job of lending a hand or heart where needed. 
I am sure your parents have expressed in their way how thankful they are for you, and if by chance its not a routine thing for them please know they think of you all day every day. You have not gone forgotten. 
Most importantly my lovely, the reason you are going to rock this thing we call life is because you
know unconditional love, you know true heart ache and you know what’s truly important.
You have lived a life that takes a strong heart and a stronger mind, and because of that you will mature much faster than your school mates, you will exhibit more compassion than many acquire in a life time. You will know more about health care than 95% of the adults you pass on the street and you will have a sense of humor that can destroy any rock thrown in your path of life. 
When you first experienced the reality that your sibling had special needs, it was then your destiny was imprinted in the stars. From then you were chosen to stand tall, stand proud and stand together.
You are going to be an awesome human being,  you are going to change lives…all because you were the sibling of a special needs brother~

*Although I have shared with you my own family photo’s, I want to make it clear that this letter is for Kailey (sister too a special needs brother) but not necessarily TO Kailey. I am writing this letter for anyone who has grown up with a special sibling. If/when I do write a personal letter to Kail, it will be for her where all things referenced will be about her and the love she has for her brother (written with a grin*). But in all seriousness…I know she can relate deeply to this letter, and for that my darling we are so proud~

As I said in the previous post, I am doing the same idea for Braden as I am for Kailey. I am doing 100 posts on 100 things I want to teach each of my children. Naturally, I want to teach both of them the same important facts of life. But for the sake of this blog I will mix it up a bit and leave each of them with similiar yet different pieces of advice. 

100. Those who are able to laugh at themselves and at the rest of the world equally outlive us all.
Pretty self explanitory I think. One of the most important lesson’s I actually have been teaching Braden since the day he could understand the relevance of laughter. 
Being able to laugh at yourself show’s the maturity of that individual. We started teaching Braden this lesson WAY back. Right back to the beginning, when he stared his very first physiotherapy program when he left the hospital. I remember wanting to send Braden to SickChildren’s Hospital, once he was diagnosed with the Spinal Cord Injury I wanted him to go where I felt he would best be looked after. I kinda figured, Sick Kids was my hospital..they did a great job with me, maybe Braden would be better off there. 
The medical staff reassurred me that Braden would be a big fish in this little pond at MacMaster and if sent to Sick Kids he would be a little fish in a big pond. Meaning…they have seen all kinds of things at Sick Kids and that Braden’s needs wouldn’t be necessarily a top priority. NOT that Sick Kids wouldn’t have done a wonderful job cause in my eyes they are the best…but I did understand what MacMaster was saying and we then agreed to keep him right where he was.
With being in a smaller hospital…it left Paul and I with the chance to be more involved with Braden’s care. We had to dive in and get hands on really quick. We became part of his rehabilitation routines, working with all the medical staff to help get our son healthy again. 
Well…the best way to get a 2 year old to do something they don’t want to do..is with laugher. We broke out all the funnies we could. Talk about becoming comedians…quick work on our end. 
It really wasn’t easy, he was 2…and he didn’t want us telling him what to do, not alone tell him to do things that were NOT fun in any way. 
Challenge, is one word that described a good 3 years…
I will have to say it was probably my dad who stared the “sillies” in the hospital room. For whatever reason Braden really responded to someone inflicting pain on themselves. Slapstick humor. My dad would literally “pretend” to bang his head on things in the room and Braden would die with laughter. He LOVED it. 
Braden would mimic papa and pretend to do the same kind of “physical harm” joking…sounds sick, I know, but we’d all laugh and pretend he was hilarious(well in all honesty, we didn’t need to pretend, cause he was funny. His laugh alone made us beam with pride and laugh with love). This then taught him to laugh at himself, he loved to make us laugh and our reaction fired him up. I do remember wondering if all this was healthy and of course through the years we banged into those idiots who “looked” to deeply into this humor and felt it was inappropriate…lol…whatever!
Anyways, thats how we managed to get Braden to learn how to laugh at himself. We’d make his “workout” fun. There was a fine line between laughing with him, or laughing at him (something we NEVER did)…
So when you are trying to get a young child of 2 to understand that his left arm isn’t fuctioning normally but keep trying to “make it work”, the best way to do that is through humor. We named his left hand “baby hand” and his right hand “dinosaur hand”..well actully Braden named them that, baby hand didn’t work so it was like a baby. Dinosaur hand did work and it had more power..therefore a dinosaur. We made fun games with those, and when baby hand didn’t “work” we learned to laugh at some situations related to “baby hand”….Braden had fun with it as well…it was our beginning to teaching him its ok to laugh at yourself, don’t take things so seriously. 
We have had ups and downs in this department. He natually went through difficult stages in different times in his life and sometimes laughter wasn’t appropriate. SO we laughed at others…and that too is another story..and probably one that once again my dad started~

I love us….I really do*