Friday, April 11, 2014

Seizure Activity

On Wednesday, February 6 at about 1:45 AM my nurse was sitting at the desk when all of a sudden she heard my vent start to alarm.   She got up and rushed in and she quickly realized that I was having a grand mal seizure.  My arms were outstretched and twitching, my eyes were rolled back in my head and my eyelids were rapidly moving.  There was also foam coming out my mouth and my face was doing funny things as well. 

We have an intercom system throughout our house so she yelled from my mom to come down.  She raced down the stairs to find me unresponsive post seizure.  It lasted less than a minute; they were calling my name and my nurse was trying to do a sternal rub on me.  She did a quick assessment including taking my blood pressure, checking my oxygen level and pulse just trying to make sure I was okay.  Everything was pretty normal except when she checked my pupils.  She found that my pupils were very small (pinpoint) and non-reactive to light.  I was unresponsive. 

My nurse called 911 and they came, wheeled me out and brought me to Methodist Hospital.  I had blood coming out my nose and mouth from biting my tongue and cheek.  My nurse rode in the ambulance with me and my mom came shortly after to the hospital.  My eyes were open but I was still staring straight ahead and nonresponsive.  It is unclear whether or not the staring ahead was a petite maul seizure or if it was related to the grand mal seizure I had initially.  Around 5 AM I had another grand mal seizure. 

When I got to the hospital, they checked my CO2 and found that it was really low.  The normal reading is between 35 and 45; mine was at 7.  Within the next couple days after everything happened I was still not responding to anything. I was running a fever and one of the doctors came in and he said one of the causes could be that my ventilator settings were too high.  Basically, I was being over ventilated causing me to hyperventilate.  The technical term for this is called respiratory alkalosis.  What probably happened is that when my nurse turned me on my side the large leak that I typically have around my trach was somehow sealed off.  If this were the case, I was receiving my full breath coming in causing the respiratory alkalosis.

What is respiratory alkalosis?

Respiratory alkalosis is a condition that changes the balance of carbon dioxide and oxygen in the blood.  When you breathe oxygen (which is needed by the body to function properly) it is inhaled into the lungs and carbon dioxide (a waste product) is exhaled. Normally, these two gases are kept in balance by the respiratory system.  Respiratory alkalosis occurs when carbon dioxide levels drop too low.  This causes the pH of the blood to rise and become too alkaline which is what happened in my case.  Apparently respiratory alkalosis is associated with numerous illnesses and is a common finding in patients on mechanical ventilation.

Overbreathing is a sign that respiratory alkalosis is likely to develop. Low carbon dioxide levels in the blood also have a number of physical effects. These include: dizziness, bloating, feeling lightheaded, discomfort in the chest area, confusion, dry mouth, tingling in the arms, heart palpitations and feeling short of breath.  Finally, an affected person may have a seizure.  However, the NIH states that the risk of seizures is very low. They only occur in the most severe cases.  As far as the recovery process, once carbon dioxide levels in the blood are brought back to normal, the symptoms should disappear within a short period of time.  In other cases, the explanation is a general medical emergency.  At these times, the outlook can be more uncertain.

Before they knew the cause, they did all sorts of things to try to figure it out.  They put in a PIC line and started IV antibiotics.  They tried to do a lumbar puncture to test my spinal fluid to see if I had meningitis.  However, they weren’t able to go low enough because of my baclofen pump.  I also had an MRI, CT scan, blood drawn; basically they did a full work up trying to figure out what was going on. 

When they determined it was respiratory alkalosis they ended up turning down the settings on my vent.  Then they checked my blood gases in different positions to see where I was at.  They hooked electrodes to my head almost like a skullcap to measure brain activity and brain waves.  To help fix the problem right away, they loaded me up with seizure medications and were surprised when my EEG looked like I had taken a lot of drugs LOL. 

There were many funny things I did while on these meds.  In one instance, I kept trying to tell them to take the washcloth off my head (the EEG).  At another time, I was determined to have my nurse change the channel on the TV to channel 4 (I was actually looking at the monitor they had me hooked up to).  It was also interesting when the doctor came in to do a mental exam on me.  She held up a flashlight and asked me what it was and I got a big smile on my face.  I said “it’s a scapula”.  I also couldn’t verify my name or date of birth.  They didn’t fully understand in the beginning that this is not how I normally act; they didn’t really know my personality so my nurse was showing them videos of me on YouTube. 

In order to determine if I could eat/drink anything, that Friday afterwards they did a swallow study on me.  They made me swallow this nasty chalky tasting stuff.  It’s basically where they take a machine so they can see it go down.  Because of the state I was in, I failed miserably.  That’s when they decided to keep me on tube feedings to supplement my diet.  Before I was able to eat again, I had to do the swallow study again.  I was much more conscious and hungry for food!  The second time I passed with ease but had to start out with Jell-O, applesauce and other soft foods.

I went home on Monday February 10th and tried to continue with my daily routine.  However, on Thursday, March 20 I had another seizure at the same time in the morning.  My nurse called 911 and I went in to the hospital again by ambulance.  After doing some tests, they couldn’t figure out what caused it.  This time, it wasn’t due to respiratory alkalosis; now I’m not sure if that was the only cause of the first seizure.  I was only in the ICU at the hospital for one night.  I went home the next day around 5 PM and continued my routine as normal trying to recover.  Yet once again, at the same time on the morning of Wednesday, April 2 I had a 3rd seizure.  The same thing happened as the first 2 and I was admitted to the hospital again.  I was there overnight, discharged the next day and they still haven’t found a cause.

Unfortunately, each seizure has given me short-term memory loss.  The first seizure was the worst and I don’t really remember that week or a lot of the time I was in the hospital.  The other 2 were a little bit better, but not being able to remember things is difficult especially in my situation.  Even though I don’t remember things and my memory is a little fuzzy, I do remember how happy I was each time I was discharged.  I’m not a fan of the hospital even though I’ve spent so much time there.

As disappointing as is to have seizures in the first place, not knowing why they are happening is even worse.  Currently, I’m seeing a neurologist and she prescribed a seizure med for me while we try to figure out the reason why.  The biggest part is that seizures aren’t new to me.  I used to have them after my accident in the same way and was on a medication for them.  After 5 years of having them, in the beginning of 2009 I discontinued the meds after being seizure free for 2 years.  I never knew the reasons for them back then and may never find one for these.  The good thing is that I’m on medication for it now so hopefully they won’t happen again.

I look forward to posting more about what has been going on these past couple months within the next week!  Thanks for your patience.

Friday, February 14, 2014

In Recovery Mode

Hello everybody,
I just wanted to let everyone know that Wednesday morning at 2 AM I had a seizure.  My nurse called 911 and they took me to the hospital.  I was in the ICU since Monday evening and have been pretty much out of it since.  I still have a lot of memory loss, and won't be able to update probably until next week.  Thank you for your patience, thoughts and prayers!

Sunday, February 2, 2014

Finishing My Redesign

I can’t believe that it’s February already!  January went by so fast and I have made a lot of changes.  Unfortunately, the posts aren’t really coming like I hoped they would.  It’s like every day I go on the computer with the intention of blogging but end up getting distracted by other things.  It’s a habit that definitely needs breaking.  The web does an amazing job at sucking you into a world of news stories, interesting facts, videos, articles and of course the ever growing social media.

The low temperatures don’t make it any easier.  Here in Minnesota it’s been extremely cold and snowy.  I spent most of January indoors which was hard on me since I like to be out so much.  I’d like to find more places to get out and do things at.  Whether it’s volunteering, shopping or even finding a side job, I’m interested in getting involved with more things.  Hopefully things will start opening up… We still have our snowiest months to come!  Despite the weather it’s given me some time to finish my redesign projects.

My blog is pretty much put together and redesigned! I just have a few tabs to finish and I’m in the process of doing that.  It's taking a lot of time but it will be well worth it.  Anyone have any comments or suggestions?  So far I’ve gotten positive reviews from people and I love the new design.

My room is just about back together.  I changed the color from light blue to sail cloth (more of a light taupe color); it’s a big difference and definitely more grown-up.  I also hung all new pictures but still have a few walls to go.  I also ordered 2 recliners to put in there instead of my blue couch.  That way I can sit in one of the recliners to get a break from my wheelchair and bed.  I’ll be posting pictures in about a month when everything comes together, hopefully sooner than later.

Today I’m going to be watching the Super Bowl.  I don’t usually watch a lot of football, although I’ll watch the Minnesota Vikings here and there (mostly when they’re doing well which isn’t too often these days).  The Super Bowl is packed with good teams, lots of noise, and great commercials.  Sometimes I just want for the commercials which is rare because most of the time when I’m watching TV I try to avoid them by fast forwarding!

Sunday, January 19, 2014

Redesigning!


I’m currently going through a bunch of changes in my life.  This also includes a well needed update on my blog.  You will soon see my blog transform before your eyes!  Over time, some things may need to be edited or changed, but the fresh new look is going to be awesome!  I can’t wait until everybody can see what it looks like!  Feel free to comment or ask questions about the change.  I’m also open to suggestions if you have any.

Along with my blog changing, I decided to paint my room and redecorate as well.  It’s been painted and now I just have to put everything together.  I’m also going to buy new things to put in my room very soon.  I will definitely post pictures of the new color and then eventually of my whole room.

Jenni

Tuesday, January 14, 2014

Wheels in Winter

Although I love Minnesota, winter is hard on me (and my wheels).  With cold temperatures below freezing and sometimes even below zero, along with the piles of snow it’s difficult for me to get around. Sometimes I develop seasonal depression because I’m stuck indoors.  When that happens, I’m never in the mood to do anything or be productive.  It’s very unfortunate because I love getting outside (especially to take my dog for a walk) and go out in the community.  I’m looking forward to spring when I can get outside more.

Last week was especially hard.  The temperatures were very extreme; schools, events, activities etc. were even governed close last Monday and Tuesday because of the cold.  I believe the high was below -20°F and the wind chill factor (how it felt) was at least -40°F.  The news commented saying five minutes outside and someone could start to freeze!  Even Brody didn’t want to go outside.

The weather here is also very unpredictable.  The other day felt like a heat wave with the high being 40°F.  Other states probably might consider that cold but not us here!  I would definitely take Brody for a walk if there wasn’t so much slush in the streets.  In fact, I did when it first snowed and everything was fresh.  Last night it snowed a few inches and we’re due to get more today.
 
Me and Brody about a month ago.  It was still warm enough to be outside and the ground wasn't too wet.  By the way, he loves his sweaters!
 

The sun was shining brightly.
He only goes in the snow when it's warmer out.
When it's cold and snowy he goes out as quick as possible! 
On this day he stopped to soak up the sun.

Having a SCI and being on a ventilator is no match for the cold weather.  Because of my injury, I’m not able to feel if I’m cold or hot.  The only way I know is when it’s too late and my body starts spasming.  Also, the cold air can be very hard on my lungs.  When the vent pulls the air in, it goes through the tubing, then my trach and into my lungs.  There is nothing to warm the air up so it feels the same in my lungs as it is outside.  When someone breathes through their nose, the hairs warm the air up so it’s not such a shock.

There are still a couple months left of winter with more cold days and lots of snow!  As long as the temperature stays above 0°F I’m willing to venture out.  It’s definitely not the same to just look out the window as it is actually going somewhere.  Hopefully my wheels can take all the snow we’re getting and I can go somewhere soon.

Jenni

Tuesday, January 7, 2014

Here's to the New Year

As the New Year starts, I’m reminded of the reason why I choose life instead of going down a darker road. Since my accident, I’ve continued to stay positive and believe that things occur for a reason. I don’t take anything for granted because you never know what can happen. There are instances when life can be difficult and we may face times of trouble. That might mean having to deal with things that can be unimaginable; things that may bring us down or even break us.

Despite what I’ve been through and what’s happened, I still remain hopeful and have joy because that’s what gets me through even my darkest moments. I realize that to many people my situation may seem challenging or hard and some even feel sorry for me. However, I’m grateful for where I’m at knowing very well that my situation could be worse. I live every day like it’s my last and cherish what I have.

That brings me back to my favorite quote and what I always say about it: "Life is not measured by the number of breaths we take, but by the moments that take our breath away." This quote has two meanings for me. The first meaning is exactly how it’s stated. The second is a literal and more personal meaning. Life is not measured by the number of breaths I take, which happens to be 18 breathes a minute, but by the moment that took my breath away.

The highlight of 2013 was the birth of my niece, Avery Jean. She is now almost 5 months old and the happiest baby ever. I’m always greeted with smiles and she’s even starting to laugh a little bit! A child is the greatest gift anyone could ask for. I love being able to watch her grow and develop each and every day. My sister Kristen is a great mom also; I’m proud of her for everything she’s done and how devoted she is.

Avery 4 1/2 months

My goals for 2014 are to stay true to myself, continue motivational speaking and volunteering, find a job that I’m passionate about, start working on writing my book, paint and update my blog more. I’m currently in the process of redesigning my blog and my room. Not sure what that says but I am mainly trying to make changes in my life. It’s difficult in my situation to be spontaneous with change. It is definitely a process and I get bored easily not being able to do things all the time when I want to do them. Although I believe I make the most of my situation and strive to be a better person every day.

Jenni

"To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived-this is to have succeeded."
-Bessie Anderson Stanley

"There are only two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."
-Albert Einstein

Tuesday, December 24, 2013

Tis' the Season

Merry Christmas everyone!  Every year since my accident we started hosting all of the holidays at our house.  It’s just easier because of accessibility; I can’t get into any family members houses.  We have some family coming tonight for Christmas Eve and some tomorrow evening for Christmas day in which we will celebrate and open gifts.  My mom, sister and I will exchange gifts Christmas morning.

I didn’t ask for much this year, I usually don’t.  I enjoy buying things and giving gifts instead.  To me, Christmas is about spending time with family and enjoying their company.  Although I know to others it’s all about the presents and the material things.  Despite reasoning, it’s nice to see everyone together and having a good time.

I hope you find peace and joy in this holiday season!

Jenni

Friday, December 6, 2013

Indoors while Redesigning


I know I have not been posting as much lately (or this year).  It's been hard for me to get into the groove.  Part of it has to do with using my computer… It takes a really long time for me to write a blog post using speech recognition software.  Every time I breathe it picks up the sound and things I'm saying something else.  I'm hoping to get that revised soon with a new headset.

I’ve still been volunteering and advocating.  I had a board meeting earlier this week for Midwest Special Services (description in the previous post).  Although, I’ve been spending an awful lot of time indoor due to the weather.  Over the past week it got very cold outside.  It’s currently in the single digits (high of 5°F today) and expected to get colder tomorrow.  It also snowed the other day making it difficult to get around.  My next post will be about winter and Minnesota!

I’m currently in the middle of redesigning my blog.  It will have a totally new look and I will be focusing on posting more.  I also may start posting about other things and issues related to people with disabilities, along with updating you on my life.  In the future to come, you will also be able to purchase my artwork!  I’ll be ordering prints and making more originals for people to buy.  This blog will be back up and hopping soon!

Do you have any ideas or suggestions for me?  Is there anything you'd like to see differently?  What have you noticed on other people’s blogs or you have on your own that’s interesting?  I’m looking for lots of comments on this one as I am trying to please my readers as well as keep it to my own liking.

Jenni

Monday, November 18, 2013

Volunteer and Advocacy

The past few months have been kind of hard with figuring out how I want to spend my time.  I graduated high school spring of 2005.  After that, every semester from fall of 2006 to spring of 2013 I attended college (including some summers).  However, this fall semester I chose not to go back and to take a break.  I have my associates in communications from Normandale Community College and attended one semester at St. Thomas University to get my bachelors in communications.

Ms. Wheelchair Minnesota 2011


Over the past couple years I’ve had the privilege of being an active part of my community.  I won Ms. Wheelchair Minnesota 2011 in which gave me an opportunity to attend events and advocate for people with disabilities.  I did speaking engagements and went to various events promoting my platform, making multiple connections and inspiring others.  I also flew on an airplane for the first time since my accident to attend the Ms. Wheelchair America competition in Michigan, where I won 4th runner-up.

Since 2006, I’ve done motivational/public speaking to over 25 different schools, organizations and events.  My goal has always been to share my life story, educate others, and to show the abilities of people with disabilities.  By speaking, I teach others not to take things for granted, never give up and to live life to its fullest.  I’ve spoken to physical therapists, nurses, engineers, others with disabilities, the public, schools etc. (anywhere from 1st to 12th grade).


Aside from motivational speaking, I’m on a couple of Board of Directors.  Currently I’m on the BOD for Ms. Wheelchair Minnesota and Midwest Special Services.  I attend meetings and state my opinions along with making decisions about the different nonprofit organizations.  I’m also on committees within the Boards.  It feels great to be able to have a voice in such great organizations helping others.

I was a volunteer at Gillette Children’s Hospital.  In 2006, I worked with kids in outpatient doing crafts and watching them colored.  It was cool because I had my own table set up.  They could come over and spend their wait time keeping busy.  I love to see what creative talent came out of every piece of artwork.  As of now, I am a volunteer at Gillette’s Lifetime Clinic.  My job description is to work with people using speech recognition software.  The clinic hasn’t needed me for a while on that specific of a topic.

Eric LeGrand telling his story and answering questions.

Lately, I’ve had the pleasure of doing a lot of volunteering, advocating and attending events.  Last month on October 5, I attended a kickoff event for new members put on by the Minnesota Spinal Cord Injury Association (MNSCIA).  As stated on their Facebook page, “The Minnesota Spinal Cord Injury Association (MN Chapter of NSCIA) is an advocate for people affected by spinal cord injury/paralysis in Minnesota by being the central point of access to resources.”  On November 15, they co-hosted an event I attended that featured Eric Legrand.  He is a former Vikings player who sustained a spinal fracture during a football game.


Speaking at Ridgefield Middle School-November 15, 2013

Also over the past couple months I did motivational speaking to a middle school and high school.  I love being able to talk to the kids and tell them that anything is possible and not take things for granted because you never know what’s going to happen.  After I speak, I always have a question and answer session in which they really respond to.  It also helps me for speaking in the future to know what’s important and what kind of things they want to know.  I’m hoping to do more speaking soon.

I’m very proud of all the things I’ve been able to do to help out others in my current situation.  And although I’m not going to school as of now, I know my accomplishments and achievements have not gone unnoticed.  I’m going to continue expanding my knowledge and helping people in need.

Jenni

Everybody can be great. Because anybody can serve. You don't have to have a college degree to serve. You don't have to make your subject and your verb agree to serve.... You don't have to know the second theory of thermodynamics in physics to serve. You only need a heart full of grace. A soul generated by love.”
-Martin Luther King Jr.

Friday, November 1, 2013

Compile Post: Anniversary Day

This is a compile post of past journal entries with added new content:

Chrysalis

Throughout life you will learn
that sorrow will not remain.
You will see that it is
like a butterfly emerging
from its cocoon to make way
for greater things.
-Corrine DeWinter

When a caterpillar spins a chrysalis, does it know its life is going to change and that it's going to turn into a beautiful butterfly? When a baby is born, does it know the path that it's going to live and the life-changing moments that may occur? Change happens every day whether it is good or bad. People die, give birth, get jobs, lose jobs, graduate high school or college, etc. Some is just simply change and some is life-changing. Like an accident that changes you from an active teen to being paralyzed and in a wheelchair.

Today marks the 11 year anniversary of the accident that changed my life.  This day doesn't frighten or scare me; I don't get sad or depressed; I don't think why me or about all the "what ifs". I just live and thank God that I am still living and still hear on this earth able to live my life with this change. The accident did change my life, but it didn't change me. I'm still the same person I used to be. I still want to love and be loved. I still need friends and family to support me. I want to be an advocate for others with disabilities like me; others who have faced similar changes. I also want to show people not to be afraid of change. Because of this change I live my life differently.

My accident has definitely altered my outlook on life.  I feel very fortunate to be alive and don’t take anything for granted.  I value my life and my things more and try to do good for others.  It has had a profound effect on me.  I am a better person today because of it and have learned a lot over the past years. I’ve also met some wonderful and amazing people with whom I never would’ve met if this hadn’t happened to me. 

Every year on this day I choose to celebrate life. I always say happy anniversary to me.  It wasn’t a tragedy or a disaster; it didn’t ruin my life or destroy me to pieces; I’m not broken, damaged, or shattered about it; I didn’t have a meltdown or blame anybody else for it.  It was simply what I call it-an accident.  It was an obstacle in my life that I had to overcome.  A challenge in which I had to accomplish and believe I have done so to the best of my ability. It may be hard at times, but I'm happy and that's all that matters.

I've always felt that there was a reason why the accident happened and I survived. Maybe it was to help people in my situation or open someone's eyes to what it's like living with a disability. Whatever it may be, I'm glad that I did.  Word of advice: don’t take things for granted, you never know what can happen.

Jenni

"New beginnings start as the seed of a flower does, buried, unseen, but destined to bloom.
-Corrine DeWinter