Life Back at Home

Katie's main goal, her "mantra", while at Primary Children's Medical Center was "I Want My Life Back". When she arrived at PCMC, her body was in a broken state due to her Dysautonomia symptoms and her terrible nerve pain and overloaded nervous system. I remember the day she was admitted -- her hands were curled in pain, her body slumped in the wheelchair and her head was down as she tried to cope with the overwhelming sounds, smells and light of the entrance to the hospital. In those days, she truly was getting through one day at a time, and many days were one hour or one moment at a time.

Katie chanted this mantra as she went through the hard days of a brilliant, but intense, multi-faceted therapy program there at PCMC. She focused only on this thought as she pushed through incredible pain and did what her therapists asked her to do. Her determination and this therapy program gave her her life back! Even her Dysautonomia symptoms diminished. As she got stronger, her whole system did better. For more information on the link between physical activity and Dysautonomia, click here.

Now back home, she is stronger -- out of the wheelchair, out of bed, and is pursuing life. She still has a way to go -- her stamina still needs to be built up, and the level 9-10 nerve pain interferes with everything. It has definitely slowed down her physical recovery, but when you look at where she was In April, her recovery is still a miracle.

In just one month, Katie has attended multiple outpatient therapies (this will continue for some time) and follow-up doctor appointments, as we form an outpatient version of "Team Katie". She has met with advisors and registered at Utah Valley University for Fall 2013 classes, and is returning slowly to her editing part time job. She also tries to exercise to increase her stamina and is following a daily schedule. (Well, most days..) ;-)  Next up, learning how to drive again and buying a car! On the fun side, her Dad and I have been absolutely thrilled to be able to BE with her again. We marvel that we can go out to dinner together, and go shopping together! My favorite shopping trip so far was when we went shoe shopping for Katie. How great was it to buy shoes for my formerly-wheelchair-bound girl?! They are short trips out, but they are trips out!!! Yay!!! Katie is also enjoying going out and doing fun things with Alex. Day to day life is much sweeter for her now.

She has done all of this with her nerve pain, which adds a sour note to life's sweetness. But it also makes her continue to be my hero. She is amazing, she has a great attitude, and her Dad and I couldn't be more proud of our girl. We thank our Father in Heaven for his sweet blessings to our family. We thank you for your continued prayers for Katie. They continue to make a difference in her every-days.

The journey continues!

A Super First Week

Katie was able to adapt to the new set up and got into a routine and followed a schedule for the rest of her first week. It was a pretty eventful week that, frankly, took our breath away!

We continue to drive up every day to be with her in the evenings -- her "reward", as she calls it, for working so hard during the day. The daily driving up and back, the parent meetings with doctors/therapists/nurses and keeping minimal routines going at home are keeping me pretty busy -- way busier than I thought I'd be during this time. I had looked forward to daily updates on this blog, and catching up on projects with hours and hours to myself. Hah. Not happening. ;-)

Katie is also busy -- she goes to 5-6 therapies all day -- her day begins at 8am and is finally done around 4pm. That's a full-time schedule for anyone, but we are talking a day full of physical therapies! That's a *really* full day; and she's doing it all with nerve pain. Medicines to help have been given to her, but they take anywhere up to 6 weeks to build up in the body and give real relief you can feel. They are are also "helping" Katie's pain by desensitizing the most painful areas; that means pressing down on palms and standing full-soled on feet. This works, but it's hard to tell your body, "hurting more will help me hurt less". She has accomplished so much, but she confides to me that she often feels very sick and dizzy while doing these therapies. Dysautonomia is always in the background, ever with her. That makes her accomplishments even more amazing to me.  My pink zebra is a superhero!

The doctors, nurses and therapists are all so impressed with Katie, and love her attitude and good heart.

Here are some of the things that happened during Katie's first week:

• Short term and long term goals set.
• Katie was expected to make her own daily schedule, get herself dressed and order her own meals. Yay for independence!
• Gave Katie a "toolbox" of distraction techniques to deal with intense pain.
• Lots of desensitization :-(
• Using hands to pick up game pieces and practice fine motor skills with fun things like art projects and painting nails :-)
• Practicing writing: her handwriting got better and better each day.
• Walked on a very slow treadmill increasing time from 2 minutes to 5 minutes.
• Self propelled in wheelchair, then walked with a walker.
• Practiced balance by standing on a half-round ball, and hit foam balls with a foam bat. Other kids in therapy encouraged Katie to try and bean various therapists in the room. LOL!
• Discovered music therapy is her favorite time of the 'work' day.
• Tried acupuncture (!!!) and biofeedback this week and learned some relaxation techniques.
• Vitamin D was discovered to be low, D supplements added to medications.

We are so proud of Katie; blown away by all that she has been able to accomplish! Our little family feels so very blessed. Blessed by a loving, tender and merciful Father in Heaven.

Blessed to be up here and have her be cared for in this wonderful place. Blessed by all the prayers, fasting, and sweet thoughts that have been sent our way. I know in my heart that Katie could not have endured the time we had to wait to get her here, or accomplished so much this week, without the strengthening and sustaining of all your prayers. Faith and prayers are not just pretty words; they have a very real power. Thank you. ♥

A Quick Update

Unfortunately, we weren't able to get Katie to the U before Spring Break, which was all last week. We were able to speak with a manager at the Rehab department at the U before the break, and communicated Katie's needs and the urgency we feel to get her in to someone that has the clout to do something about it. There is a more urgent need: lately, her nerve pain has worsened and spread to the point where it is hard to endure the day. Also, a new symptom of not being able to breathe has set in. We think it's acid reflux related, but these episodes that just come and go are frightening -- not just for Katie but for her parents! Katie's never had acid reflux in her life, and we've only seen this in the past couple of weeks. Weird. It's a combination of things coming up, and her throat constricting completely closed. No air can pass through. We are sticking pretty close to our girl these days, as you can imagine.

Her official appointment with Dr. S-N has been moved up to early May (from June), which is a blessing we'll be thankful for, but we're hopeful that our phone call last week will move the needle on getting Katie seen even sooner than that. We feel very good about the program they have outlined for her. We just have to get her in and get it started!

She is hanging in there, thanks to your prayers and well-wishes and sweet gestures. We are getting pretty good at distractions; and Katie's sweetheart, Alex, comes often to cheer her up. Hearing Katie laughing with him is sweet music to our ears. He's awesome. How lucky are we to have the Gospel and all of you pulling for her? We are blessed. Please keep up the prayers and good thoughts. We are almost there.

Her Story, Part Two

Fresh off her triumph of graduation, and accomplishing all the goals she had set, Katie enjoyed her first summer after high school. After about a month, Katie's health began to really nosedive. She began to have many Dysautonomia symptoms we had not seen before, and at a new level. The hotter it got outside, the worse she did. Nerve pain, chest pains, difficultly swallowing, eating, and eventually an inability to stand or walk at all without blacking out. She was now forced to be in a wheelchair. From time to time, her symptoms would be alarming enough to take us to the ER. There were terribly hard days during this summer. Her Dad and I became caregivers, helping Katie through each day. Despite these setbacks, she continued to keep having a life. She worked part time at a job she loved, and pushed through the bad days. She looked forward to fun dates with her sweetheart, who has loved her through think and thin.  Her parents continued fighting insurance battles and tried to get Katie the medical help she so needed. We were finally connected to the Faint and Fall Clinic at the University of Utah, and glory be! There were doctors there that knew what Dysautonomia was! What a relief! But it also meant more tests, and appointments...

Months passed. As a family we pulled together, trying to make each day the best it could be. During a train trip north to visit family during Christmas break, we were stranded on a platform in sub-freezing temperatures. The train had broken down and ended up being almost an hour late. This exposure was poison to Katie's body, and her Dysautonomia symptoms flared to an unbearable level. Each day since has been terrible for her. Katie is in great pain all the time, and suffice it to say that every symptom she experiences (and there are many) is intense and very severe now. She needs our help in completing even the simplest things. Insurance problems continued until just recently. Despite new appointments, we have not found much relief or help for her medically. We are hoping things will soon change.

I know better than anyone else how hard each day is for her. Incredibly, Katie continues to be upbeat and happy and look for the joy in each day, and the blessings in her life. I ask myself if I could be like that carrying all that she does...the answer is no.

She is my hero.

Her Story, Part One

This is the story of my hero. My daughter Katie is a bright person. Bright in intelligence, imagination and in heart. She is a fun, sweet, upbeat person with many talents, which include writing and poetry. She is also strong and determined, something that has helped her excel in her goals and activities, and also through her health problems. We didn't know it then, but this all began with a sledding accident that Katie was in during her junior high years. Through hard work on her part, she recovered from that serious accident, but it left its mark on her body. She later needed major surgery to repair damage from that accident, and again, fought to recover. Looking back at that time, we see now that her stamina was less than before...that standing for a long time was getting harder and harder...

In the meantime, life goes on, and Katie -- now in her high school years -- got involved with with her school's Color Guard and performed with the Band which performs (and wins) at an elite level, nationwide. Her life was full -- not just with her grades and classes, but also competitions, endless practices and trips. She truly enjoyed dancing with the Color Guard -- and when Band season was over with, she continued on with Winterguard. Another organization that excelled in competition. She loved it, and the true blue friends she made during that time.

Nearing the end of her junior year, she had a few more health issues, but nothing that a little down time and some determination could take care of. She successfully finished the Winterguard season and her junior year classes. As the summer Band practices started up again, Katie began fainting at many of the practices. We chalked it up to a teenager not hydrating enough during those demanding practices. After all, she looked fine!

As her senior year started, Katie began fainting in class; air-conditioned and cool places where dehydration should not have been a problem! 

This got her parents' attention, and just as we started to look into why this was happening, Katie had an accident at a Band competition. As they finished their show, Katie blacked out. A good friend barely caught her before she hit the ground, and they quickly got her off the field. They had trouble keeping Katie conscious on the sidelines and she was rushed home -- and we rushed Katie to the ER. So began months and months of testing, hospitals, and procedures. Katie struggled to recover; she lost her ability to read and write and remember. This was heartbreaking for Katie, and it also destroyed her senior year.  We discovered later that she suffered a brain injury that day. We also figured out why she had been fainting so much; Katie suffered from a condition called Dysautonomia, probably left over from the trauma her body received during her sledding accident years ago. Her low blood pressure had caused her to pass out at the Band practices and at that particular competition that injured her.

I now have a soft spot in my heart for those that suffer from "invisible illnesses". Everything looks fine and healthy on the outside, but there is pain, discomfort and sometimes real suffering on the inside. Katie had to deal with Dysautonomia and a brain injury her senior year. While most were supportive and helpful, especially one friend in particular, there were those that felt she was 'making it up' and causing drama. After all, one minute she was acting normal and fine, and the next, she was really ill. She was even yelled at by a respected leader in front of the entire group once. Those were hard days.

The rest of her Senior year was filled with trying to rehabilitate enough to graduate with her class. Which she did -- with honors! Her brain recovered at a remarkable pace with the help of a wonderful rehab therapist. Through her strength and determination, she also took part in the top Winterguard team, helping them win first place in their division. College and a scholarship waited for her just around the corner, and she landed a great job editing in an office.  Life, despite all Katie's challenges, looked rosy.

To be continued in Part Two...

Why a Zebra? .... and um, Pink?

This is a blog about Katie and her health stuff. So...what's up with the zebra?

And one that's pink?!

During one of Katie's ER visits, the doctor visited with me about Katie's condition.  Dr. B explained that doctors, and even specialists, are trained to look for the common and known medical conditions. They see a set of symptoms and think, "oh that looks like " _____".  And most of the time, they're right, and the patients are treated successfully. He explained it like this: "When they hear hoofbeats, they automatically think "horse."

Dr. B continued: "But sometimes hoofbeats can mean "zebra" -- and your daughter is a zebra. Your daughter needs doctors who, when they hear hoofbeats, will think zebra." That conversation and Dr. B's referrals led us to the University of Utah, where Katie is currently being treated at the Faint and Fall Clinic. They know about Dysautonomia  and treatment options for our girl there -- and what a relief that is! That has not always been the case in her medical journey, as it is with most Dysautonomia patients. But that's a post for another time.

Katie and I have kind of adopted the zebra as our mascot in all this. Now you know why. I even bought her a zebra shirt to wear to some of her doctor visits! And...why a pink zebra?

Well, if you know Katie, her nature is upbeat, happy and fun. A Type 1, if you know what that means. So, if our girl is a zebra, that zebra would have fun pink stripes! Katie is the Pink Zebra. Hence the name of the blog. Make no mistake -- Katie is going through a heartbreaking, incredibly painful, hard time right now. She takes one day at a time, sometimes one moment at a time. I am sure we will be updating you on some very hard days in the future. In spite of all that, we picked a fun, happy look to the blog and a fun name to honor Katie; and for the way she faces each day with courage and grace and a happy attitude. We are so proud of her.

We so appreciate the love, support, concern, TLC, and prayers we have received from many of you. We are so blessed.

Dysautonomia 101

 
First things first. Katie suffers from a chronic condition called Dysautonomia. I know. Dys-auto-what? That's what I said, too. Here's a basic introduction:

Dysautonomia is a pretty big word. It is pronounced dis-auto-nome-eia.

Dysautonomia is a dysfunction of your autonomic nervous system (ANS). This means that the automatic things our bodies usually do may not be happening so "automatically." Obviously, the autonomic nervous system is pretty important to our bodies. It controls things like heart rate, blood pressure, digestion, body temperature regulation, endocrine system, and pupil dilation and so much more. Most people are unaware of their autonomic nervous system working in its usual "involuntary" manner. It controls the body's systems "automatically" and thus healthy people usually take it for granted. When you have a dysfunction of this system you discover very rapidly that it is nothing to take for granted!

It is super-challenging to live with. Imagine feeling like you have the full out flu, or how you would feel if you just got through running a marathon. Pretty bad, huh? That's just a regular day for someone with dysautonomia. This condition is hard to explain. I usually fall back to drawing a parallel to a control tower in an airport. Imagine if the signals coming from the control tower were all WRONG. Can you imagine the chaos at that airport? Planes would crash. Luggage would be lost, people stranded, and on and on. That is what's happening in Katie's body. Almost every system that is governed by her ANS is getting wrong signals. It's causing serious chaos in Katie's body. And it's all on the inside. On the outside, she looks normal.

Here's an excerpt from a wonderful site: the Dysautonomia Youth Network of America, Inc:

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. To the casual observer, the dysautonomia patient can appear to be healthy. The manifestations of the conditions are occurring internally, and although the symptoms are quantifiable and verifiable medically they are not visible on the outside (people cannot see fast heart rates, blood pressure changes, dizziness, migraines, stomach pain etc.). Symptoms of dysautonomia can be unpredictable, may come and go, appear in any combination, and usually vary in severity (wax and wane). Some symptoms seem to occur in intense phases.

Patients often become more symptomatic after a stressor or physical activity (which can lead to chronic avoidance of physical activity contributing to additional decline). Symptoms can occasionally be severe enough that patients may require consideration for placement in full or part time homebound teaching programs for health impaired students; others will be able to attend school, often with modifications in their educational plans. The social isolation experienced by not being able to attend school or community activities is one of the hardest things for these children to deal with. It is essential that school systems make every possible effort to help these students remain in school and to keep homebound students connected to their peers.

Since patients afflicted with dysautonomia are usually normal in appearance, it can be a hard condition for laypeople to understand. Even the general physician sometimes misses the clues leading to a proper diagnosis. The symptoms are often difficult for the very young patient to verbalize and the conditions are not always promptly recognized. Traditionally, cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia patients. Sometimes neurologists and other specialists get involved as well. Families often find themselves desperately traveling great distances to the few pediatric dysautonomia specialists throughout the country for a proper diagnosis and innovative treatment.

The financial burden placed upon these families is often significant. The emotional toll and initial heartache can be devastating for everyone involved. Such an illness has a rippling effect on the entire family. Chronic illness counseling is often recommended to help the patients and their families deal with the impact of the conditions on their lives.

Symptoms of dysautonomia may include:

Orthostatic Intolerance (inability to remain upright)
Dizziness
Syncope (fainting/near fainting)
Tachycardia (fast heart rate)
Bradycardia (slow heart rate)
Palpitations
Chest Discomfort
Low Blood Pressure
Lightheadedness
Gastrointestinal Problems
Excessive Fatigue
Exercise Intolerance
Nausea
Visual Disturbances
Weakness
Shortness of Breath
Mood Swings
Anxiety
Vertigo
Migraines
Tremulousness
Noise/light sensitivity
Insomnia
Frequent Urination
Temperature Regulation Problems
Brain fog/forgetfulness
Inability to concentrate
Difficulty with recall
Appetite Disturbance
Hypersensitivity to sensory stimulation

Depending on the day, Katie deals with most of these symptoms. To keep this entry from getting too long, let me include a link to treatment options and prognosis: click here. It's interesting to note that over 1 million Americans suffer with this condition; a condition that is just now beginning to be understood and studied.  Click here to find out why you've never heard of Dysautonomia...

To learn more about this condition, please google "Dysautonomia", or feel free to leave questions in your comments!