John and I returned home Tuesday so that we could take care of many things piling up at home. It was very difficult to leave Jared alone at Shepherd but he is in good hands and it will be good for him to learn to manage on his own for a short while. As selfish as it sounds, we need a break too. It has been an emotional and physically exhausting 40 days.
When we left, our case manager Ryan, put the goals for the week on Jared’s whiteboard. This week was putting his shirt on by himself! It seems like such a simple thing, but when you can’t lean forward or use your hands to grasp the shirt and pull it down, it becomes a huge deal. I’m thankful to report that as of last night Jared said he had almost mastered it! He still has difficulty pulling it down in the back but that will come in time.
Being home is a weird feeling. Last week when I came home for the first time I was an emotional basket case, and now John is going through the same thing. All the emotions and the shock of the entire last 42 days just come rushing, sometimes at the most inconvenient times. The full scope of what has happened to us and most of all, Jared, seems surreal.
Still so much to do. Onward and Upward. Next week we are visiting Gaylord Hospital in Wallingford CT to see about a day program for Jared and also going to look at the MV-1 as a possible vehicle to transport Jared in and one which could be made into a car he could drive.
John will return to Atlanta next Thursday and stay until Tuesday then Jared’s mother Beth will arrive from the 1st until the 8th. In July John has to work in Savannah so he will only be four hours away and I will get down every few weeks. The Shepherd has set Jareds tentative discharge date of August 20. That day cannot come soon enough!
People have asked if they can visit Jared in Atlanta. The answer is a loud YES! Weekends are best because Jareds therapy schedule is pretty full until about 5pm every day. Jared would love visitors! If you can’t come down you can also Skype him @ Jared.grier
GrierStrong shirts can be ordered as well for $10 plus shipping. Email firstname.lastname@example.org
Worcester Mass, By Steven H. Foskett Jr. Telegram & Gazette Staff
As you can imagine, with the news of Jared’s injury we have been contacted by news sources wanting to tell his story. This is another new terrain for us brought on by the trauma. You can follow a link below to an article written by Steven H. Foskett Jr. of the Telegram in Worcester, MA.
We appreciate that Steven didn’t dramatize Jared’s story after interviewing Jared, his dad John and me. The story is told in an honest and informative way.
We only hope that with the publishing of such an article, including the blog which you are now reading, the informative and candid posts will help others on a similar journey.
Very busy week. Lots of physical therapy, outings to the mall and our first outing on our own with the “Push Pass”!
This pass allows us to “Push” Jared out of the hospital. We can go anywhere we can push his wheelchair from the hospital (NOT in a car). To obtain the push pass we must first “master” his entire bowel program. Doing his “DIL” or Digital Stimulation is a process we use to clear Jared’s bowel each and every morning. It usually takes about half an hour. Right now we have to do it, but hopefully Jared will gain enough flexibility to do it himself. Then every four hours we must do his intermittent catheterization or “IC”, which involves placing a catheter in Jared’s urethra and draining the urine out. Hopefully Jared will be able to do this on his own soon as well. For now, in order to get a little freedom, we do these tasks and our reward is taking Jared out of the hospital and rolling down Peachtree Blvd to see the sights of Atlanta!
The next step of freedom is called the “Day Pass”. This requires us to pass an entire 8.5″ x 14″ page of “tasks”. Hopefully we can accomplish this by the end of June. It incorporates all the classes and practical knowledge we have learned in the weeks we have spent thus far in the hospital. However, we still have lots of “practice” to do as some tasks are more difficult than others, and with two of us here, there are only so many times that we can practice! When we have earned the “Day Pass”, we can take Jared to Uncle Marty’s in the car! Woot Woot!
John’s Mom and Step Dad came to visit on Saturday and we all went out to dinner down the street. It was great for Jared to get out for his first meal and we had a great time! He said it was the best meal he’s had since getting here!
Rolling down Peachtree and going into the restaurant on our own was a liberating experience!
Marty, Karee, Lauren and Grandma Diane stopped by on Sunday and brought us another fabulous lunch that we ate in the 7th floor secret room. Its a beautiful glass room with a fabulous view of downtown Atlanta. We go up there frequently to watch thunder storms. Not many people know about it so it’s usually peaceful and a good place to relax. Logan had to leave today to get back to work tomorrow. Jared enjoyed his company and it was good for all of us to be together again.
Skin care – a very important part of a quadriplegics life.
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. A pressure ulcer involves damage to the skin and underlying tissue. Pressure ulcers, also called bed sores, decubiti or decubitus ulcers, range in severity from mild (minor skin reddening) to severe (deep craters that can infect all the way to muscle and bone). Unrelieved pressure on the skin squeezes tiny blood vessels, which supply the skin with nutrients and oxygen. When skin is starved of blood for too long, tissue dies and a pressure ulcer forms.
Sliding around in a bed or chair can cause blood vessels to stretch or bend, leading to pressure ulcers. An abrasion can occur when a person’s skin is pulled across a surface instead of lifted. A bump or fall may cause damage to the skin that may not show up right away. Other causes of pressure sores are braces or hard objects that put pressure on your skin. Also, people with limited sensation are prone to skin injuries from burns.
Skin damage from pressure usually begins on the body where the bones are close to the skin surface, such as the hip. These bony prominence’s apply pressure on the skin from within. If there is a hard surface on the outside, too, the skin is pinched off from circulation. Because the rate of circulation is reduced by paralysis to begin with, less oxygen is available to the skin, lowering the skin’s resistance. The body tries to compensate by sending more blood to the area. This may result in swelling, adding still more pressure to the blood vessels. A skin sore begins as a red area on the skin. This reddened area may feel hard and/or hot. For those with darker skin, the area may appear shiny. At this stage, the progression is reversible. The skin will return to its normal color if the pressure is removed.
If the pressure is not removed, a blister or scab may form — this means that the tissue underneath is dying. Remove all pressure over the area immediately.
In the next stage, a hole (ulcer) forms in the dead tissue. Frequently, this dead tissue is small on the skin surface, but damaged tissue may extend deep to the bone.
A skin sore can mean several weeks or even months of hospitalization or bed rest in order for the sore to heal. Complex pressure sores may require surgery or skin grafting.
Being aware of skin is VERY IMPORTANT to an SCI (spinal cord injury) patient!
Hands and feet: Jared has no movement in his legs or hands, therefore, skin which is usually sloughed off during normal movement, i.e., walking or doing daily activities with your hands, does not have the ability to naturally slough off. No friction. Layers of dead skin build on both hands and feet, and become dry and hard. Temperature regulation also has a role in skin issues. To help with this problem, The Shepherd nurses have taught us to do a vinegar bath to bring back Jared’s soft supple skin. This involves wrapping his feet and hands in towels soaked in white vinegar and placed in a plastic bag for 20 minutes then exfoliating all the dead skin off. Afterwards, apply moisturizer and voila! It works awesome! If it’s done once a week, he will defeat the “Old Man Feet”!
I returned back last night after being gone for a week and brought Logan, Jared’s step brother, with me. We have to complete care classes so we are all qualified to take care of Jared after discharge. John and Jared have accomplished so much in the week and Jared looks so good!
Today we started out doing Jared’s bowel program hands on, followed by his bladder program, getting rid of his foley catheter and trying the IC catheter. This will allow Jared to get rid of his urine bag and have a lot more freedom and dignity. It does not mean he has bowel/bladder function back, but is learning how to better manage it himself. Eventually he will get to a point of doing his bowel program every morning and his IC (or bladder program) every 6 hrs. This is the usual routine for most spinal cord injury patients. You can search on YouTube for “quadriplegia”. A lot of wonderful people have made videos which show just how much effort goes into a quadriplegics day. Things we take for granted, take an enormous amount of effort and you will gain a lot of respect for the next person you see in a wheelchair!
John has really been amazing and has managed to learn to master all of the daily tasks that Jared will be required to do upon his discharge and return to home/school life. This is required by Shepherd in order to get what is called a “Push Pass”, which will allow us to take Jared out of the hospital grounds, anywhere we can safely push the wheelchair. This will not allow us to put him in a car and take him anywhere, but it is the first step towards greater freedom.
Jared accomplished a goal today by getting into the manual wheelchair for the first time and rockin’ it down the hallway and downstairs. Getting used to balancing and pushing with his hands will take some time, but he will continue to enhance his endurance, He wears special gloves to push the wheels that protect his hands. Transitioning to the manual chair will give him a lot more freedom in the future and will be much better for him physically as well. Now the goal is to build endurance and muscle mass!
Logan, John and I completed 9 hrs of classroom time today as well. We covered topics such as wheelchair maintenance, respiratory issues, skin, spasms, dysreflexia, bowel and bladder and of course, sex. So many things to be aware of with Jared’s care. Things which seem overwhelming at the moment, but will become a daily part of our lives, and will become our new “normal”.
Autonomic dysreflexia (AD) is a potentially life-threatening medical emergency that affects people with spinal cord injuries at the T6 level or higher. Autonomic dysreflexia requires quick and correct action. AD can lead to stroke. 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). Everyone shows different symptoms, so it’s important that we can recognize these symptoms. Autonomic dysreflexia is caused by an irritant below the level of injury, usually related to bladder (irritation of the bladder wall, urinary tract infection, blocked catheter or overfilled collection bag) or bowel (distended or irritated bowel, constipation or impaction, hemorrhoids or anal infections). Other causes include skin infection or irritation,cuts, bruises, abrasions or pressure sores, ingrown toenails, burns (including sunburn and burns from hot water) and tight or restrictive clothing. Autonomic dysreflexia indicates over-activity of the autonomic nervous system — the part of the system that controls things you don’t have to think about, such as heart rate, breathing and digestion. A noxious stimulus (would be painful if one could sense it) below the injury level sends nerve impulses to the spinal cord; they travel upward until blocked at the level of injury. Since these impulses cannot reach the brain, the body doesn’t respond as it would normally. A reflex is activated that increases activity of the sympathetic portion of the autonomic nervous system. This results in a narrowing of the blood vessels, which causes a rise in blood pressure. Nerve receptors in the heart and blood vessels detect this rise in blood pressure and send a message to the brain. The brain then sends a message to the heart, causing the heartbeat to slow down and the blood vessels above the level of injury to dilate. However, since the brain is not able to send messages below the level of injury, blood pressure cannot be regulated. The body is confused and can’t sort out the situation. As soon as the trigger is removed, the patient will return to normal. So, if Jareds clothes are “bunched up” in any one point creating pressure, this could lead to dysreflexia. By “unbunching” them the dysreflexia will resolve.
The stem cell studies continue…..today was the last blood test for 2 weeks! His veins need to rest and this is a welcome break! The ASIA test happened today and won’t happen again for three weeks. Casey won’t have to poke and prod Jared for 45 minutes for a while. The Asia exam is a system of tests used to define and describe the extent and severity of a patient’s spinal cord injury and help determine future rehabilitation and recovery needs. It is ideally completed within 72 hours after the initial injury. The patient’s grade is based on how much sensation he or she can feel at multiple points on the body, as well as tests of motor function.
Jared is currently an Asia “A” complete which means Complete lack of motor and sensory function below the level of injury (including the anal area).
Tonight we might go fishing if the weather holds out. Pictures of our grand adventure tomorrow!!!
This month Jared became the first patient to receive stem cells in the Asterias Biotherapeutics Inc clinical trial partnering with Shepherd Center. Although Jared is unnamed in the article, we are reposting their press release regarding the surgery, found on the Shepherd Center website. this will give you a much better idea of what the trial is about.
June 8, 2015
Shepherd Center Treats First Patient in Clinical Trial of Investigational Product in Newly Injured People with Spinal Cord Injury
My amazing mother wrote this poem to celebrate the life of our father who passed away on April 25th 50 years ago which is also Jared’s birthday. As I read the poem again I felt that it applied to Jared as well and I wanted to share it with everyone.
When life was young – full bloom in splendor,
we looked to life as old – full of passing blossoms
enjoyed and loved along the way.
Children growing strong as we marveled
at the sweet scent of their flowering –
like a bouquet held tenderly by our love and pride.
Was it a divine plan that crushed the early bud,
or did the dying flower give rise to something more.
Did it cause you to become the most fragrant
and powerful imitators of that which we all had lost,