tracheotomy

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Top: Incision for inferior tracheotomy

Bottom: Tracheal anatomy and surrounding structures

In diphtheria patients with a significant formation of leathery pseudo-membrane, providing a way to breathe is paramount. Since the putrid pus that hardened into the membrane would be pushed into the bronchi if regular intubation was used, a technique that allowed air in below the upper pharynx (where most of the membrane formed) was needed. The concept of the tracheotomy has been around for hundreds of years, but it wasn’t until the 18th century that more than a handful of patients survived the procedure when it came to diphtheria and other membranous croups. Well, if you consider 25% to be “more than a handful”.

By the point a patient would need a tracheotomy, the procedure would need to be done quickly and accurately, but because of the relative size of veins, arteries, nerves, and tendons surrounding a child’s trachea, it would be incredibly difficult to do this successfully. However, once the medical schools began teaching this as a standard procedure in the mid-1800s, the success rate (meaning the survival of the patient, not just the procedure being done correctly) increased to around 45%. Given how sick someone with advanced pseudo-membranous laryngeal diphtheria is, that’s not bad at all.

Atlas and Epitome of Operative Surgery. Otto Zuckerkandel, translated by J. Chalmers DaCosta, 1902.

A Treatise on Diphtheria including Croup, Tracheotomy, and Intubation. Henry Z. Gill, 1887.

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Dear Juliana,

I’m in the hospital right now.  I don’t like it here and can’t wait to get out.   Like you, I have a rare neuromuscular disease that has made me very weak my whole life.  When I was a young child, I was in the hospital all the time.  There are so many things about it that I don’t like.  I don’t like nurses sticking needles in my arms and hands.  I don’t like the painful physical therapy.  I don’t like them connecting me to tubes that are supposed to help me breathe better.

I’ve been in the hospital this time for seven weeks and I probably won’t be getting out for a while.  Something bad happened in my brain called a stroke.  And the next day, I actually died for four minutes until the doctors could bring me back to life.  I’m so happy they did because I love my life!

When I was born, doctors told my parents that I wouldn’t live past the age of 15.  But now I’m 51 years old!  I have always been weak and skinny with no muscle strength, but people are always amazed at what I’ve been able to do.  I have three kids who are ages 23, 21 and 18.  Despite the fact that I can barely move my arms, I can drive my van.  I travel around the country and the world, telling people about the fact that they have the inner strength to do anything they set their heart and mind on.  I have written three books and been on television a whole lot of times.  One time, over a million people saw a documentary film about my life. (I can send you a copy if you like.)

When I get out of the hospital this time, my life will be different.  Now I have to live with a little sack in my tummy and I get fed through a tube.  I will still be able to eat, but the tube will make sure I get enough food.  I also have a new hole in my neck called a tracheotomy which will help me breathe.  But I don’t mind these new problems.  As long as I get to live, laugh and love for many years to come, I will be happy.  I look forward to meeting you someday soon.

Sincerely,                
Greg Smith
“The Strength Coach”

PS. If you want to read more about my life, check out my website and Facebook page. http://www.thestrengthcoach.com/ and www.facebook.com/thestrengthcoach

Image Descriptions: 1) Greg in the mid-1970s riding a horse at MDA summer camp. A counselor sits behind him and holds Greg’s waist to keep him balanced. 2) Greg sits in his power wheelchair on stage in a business suit. His fist is raised as he gives a motivational speech to a large audience (not pictured). 3) Greg and his son, a college football player, are shown together on the football field. 4) Greg sits in his power wheelchair at his laptop while in his hospital room. He’s eating ice chips. His tracheotomy tube is visible and there are hospital monitors in the background. Greg has a bright smile on his face in all of the pictures.

Dear Julianna,

My name is Evald and I have had muscular dystrophy ever since I was born. It’s called Spinal Muscular Dystrophy II. Actually, the doctors didn’t think I would live to be more than four years old. Now I’m 71 years old.

A long time ago, in 1971, I founded the Danish Muscular Dystrophy Association, and except for a period of three years, I have been the chairman since then. I have a daughter and two grandchildren around your age.

When I look at the pictures of you, I see a girl full of life and energy. In my humble opinion, it’s way too early to talk about when you should go to heaven. I can see that you are a smart girl, and I bet that you are a big inspiration to all your friends.

I have never been able to walk, but when my friends were running around or climbing trees, I used my imagination. It didn’t matter that I only sat on the ground, in my imagination I did all the same stuff as they did.

Until I got my respirator (that thing where the doctors put a tube in my neck for breathing – it’s awesome) I had pneumonia a lot. Now I haven’t had pneumonia for years, and I have a lot more energy.

One thing is for sure, we all have to go to heaven someday. You don’t have to go there just yet. It is possible to live for many years, to have many friends, and to have a good time with your brother and your parents.

Before you go to heaven, I think you should give it a try, and get a respirator. I think you’ll like it.

Maybe you have heard people say “life is what you make it”. I think that’s true, and I believe that you can make it awesome and sparkly.

If you and your parents are interested in learning more about life with a respirator, please ask them to connect with me on facebook.

Best regards,

Evald Krog

PS: Check out my shoes… I have them in pink too.

Photo Description: Evald sits in his power wheelchair. He is wearing red pants and a red sweater. His shoes and shirt under his sweater have green in them. His trache is not visible.

Our very first guest blogger!

Everyone has the right to equality. Where is the equality when you’re refused a wheel trans to drop you just cause you didn’t get up at 7am? Where is equality when a person cannot get a education because our healthcare system thinks people who need tracheotomy or ventilators should be home bound after age 18? People with disabilities are treated like shit starting from our healthcare system to our education system to our transportation system.

I use a tracheotomy to breathe. In order for me to go university I need someone with me at all times. They have no issue with providing the service at school or shopping facility however they won’t provide it on Wheeltrans because of the risk of an accident. This would be understandable if the same rules applied to doctor appointments, but it doesn’t. the moment you need a health care professional on a bus the accident issue disappears. Why the difference? It all comes down to information, control and power. We live in systems that only want to grab our money and use us as guinea pigs…………i ain’t gonna stand for it are you?

- Anonymously written.

It’s just part of my wanting to be all things to all people. I did a piece for Premiere magazine once on being a hyphenate. I’m a writer-director-actor, which I’ve always kind of enjoyed. I compared it to the Olympic biathlon. “Not only can he cross-country ski, but he’s a terrific marksman as well.” I want people to say, “You mean that writer performed a tracheotomy?” That’s right, I do everything.
Watch on mylifewithlupus.tumblr.com

Jasey, 1 month before her last surgery! which was september 21st 2011. the following month miss.Jasey will be having a sleep study conducted in order to determine whether or not she’s okay to have the trach removed. So far, things look promising!

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Dear Julianna,

   Happy Thanksgiving!!!!!!! My name is Jeff Paradee Jr., I’m 28 years old, I live in Central Florida, and I have Duchenne Muscular Dystrophy. As a young boy, I always knew that I would have a difficult life. Doctors told my mom that I wouldn’t make it to 18. They even told her, “What’s the point of giving him medication? He’s just going to die anyways!”  Years later, after a heart transplant and becoming ventilator-dependent, I showed them! What have I done with my life, you ask? Well, I have graduated high school with honors and went to prom. I have loved. I have sung with a band. I go to college. I go to concerts. I have been to many places, on cruises, and have met some of the most incredible people. Without medical intervention, there is no way I could have done all these amazing things.

Before I say anything else, I want you to know that I have fought very hard for almost 28 years to stay alive and trust me, life is worth fighting for—no matter how difficult things get. As Stephen Hawking said, “When there is life, there is hope.”

Now, I know hospitals are no fun, with the constant needle sticks, nurses and doctors keeping you awake, and terrible food. I know this because I have spent so much time in hospitals and have been told many times that I was going to die. But yet, here I am, sitting in my wheelchair and on my ventilator, writing this. Sometimes I’ve spent days, even weeks in the hospital, and it wasn’t enjoyable at all. What kept me going? Hope! I knew that if I could make it through whatever surgery or treatment I was in the hospital for, that I would feel the sun on my skin and the wind in my hair again. I could go back to my life.  

We all might die tomorrow, next week, next year, or even 50 years from now. Will pneumonia kill me? I don’t know. Maybe I will be hit by a car crossing the street? But, until that day, I’ll try. I’ll try my hardest to make it until tomorrow. My life is worth something. I may not be physically strong, but I am mentally powerful. I matter and so do you!

I have definitely been through a lot of scary hospitalizations. I’ve had rods put in my back in 2005, pneumonia multiple times, a surgery on my ankles to keep me walking for one more year in 1998, and going into respiratory failure in 2013. In 2006, I was told that I needed a heart transplant or I would die! Of course I said, “I don’t have time for that, I need to finish college.” Man, was I so completely wrong. If I hadn’t gone to the hospital to have them stabilize me and await my heart transplant, there is no way I would still be here today. Because of the heart transplant, I’m able to live a life that is worth something. I have to take a lot of medication to make sure my body doesn’t attack the heart and hurt me, but being able to enjoy life means everything to me, and it is great to be alive!

What has gotten me through everything and the terrible hospitalizations? Well, I learned a quote called “positive mental attitude” that is tattooed on my body. It allows me to get through everyday and fight as hard as I can to see another day. With it I can hope for the unbelievable and achieve anything that I want. Having to deal with doing four nebulizer breathing treatments every day, taking meds four times a day, taking nearly four hours to get me up in the morning, making sure that I have enough battery life on my ventilator and wheelchair to get around and enjoy my day, and having to suction multiple times throughout the day can make things very frustrating. Some days I do feel like giving up, but because these things, I get to have fun and go anywhere I want. Everyday I look at my arm and I’m reminded to have a positive mental attitude always. I believe that’s the best way to live—to have a positive outlook on everything, even at the roughest of times. I know what you’re dealing with is hard, but nothing comes easy, and you have to keep fighting.

Right now, I’m going to college to try and become a psychologist to help people who struggle, I actively attend concerts, and I’m writing a book about my life. That might seem simple and small to some, but I’m doing what I want with my life and enjoying every single day I have. Thanks to hospitals, my family, and friends I have been able to have a worthy life full of memorable experiences, that I hope you will be able to enjoy too! Remember to live your life to the fullest, make mistakes, do stuff you’ve never done before, and enjoy being alive.

-Jeff Paradee Jr.

Image descriptions: 1) Jeff as a child riding a red bicycle. There are two other children also on bicycles and a dog on the road with him. 2) Jeff is sitting in his power wheelchair outside at MDA camp. Next to him are two other campers also sitting in power wheelchairs. 3) Jeff is sitting in his power wheelchair in the center of the picture with the members of the band Alesana around him. They are all doing silly poses. Jeff’s trach and vent are visible. 4) Jeff is sitting in his power wheelchair with his trach and vent visible. He is at St. Maarten. The sea is behind him with hills on the other side. 5) Jeff is at the Warped Tour music festival next to his friend. Jeff is wearing blue sunglasses and a tie dye shirt that reads, “We’re just creatures on a rock homie!” He is sitting in his power wheelchair with his trach and vent visible.

youtube.com
Trached woman sings on Danish X factor 2016
Sarah was born with a rare form of Muscular Dystrophy and has been trached since 2013. She is on assisted ventilation 24/7 - including when she auditioned fo...

On Friday January 8th, Sarah Glerup, age 30, wrote history when she auditioned at Danish X Factor 2016 and got three times yes from the judges without them ever realizing she wasn’t breathing on her own.

Sarah is an active member of the American based NMD United, an organization for adults with neuromuscular disorders, and a co-founder of the campaign “Dear Julianna” intended to spread the message that active adulthood is possible for children with Muscular Dystrophy. Sarah herself was born with a form of Muscular Dystrophy which by 2013 had progressed to a point where she could no longer breathe sufficiently on her own. She got a tracheostomy (a small hole in her throat) and has since then been on assisted ventilation around the clock.

Her trache and ventilator, however, did not prevent her from participating in a singing contest on the same terms as everyone else. And she thereby proved leading doctors around the world wrong when it comes to life with a trache. The dominant point of view among American doctors is that a trache and vent ruin’s a person’s speech and equals a very poor quality of life.

The same bias against tracheostomys and ventilators is shared by Dr. John Bach, Professor at Rutgers-New Jersey Medical School, who is considered the most prominent expert when it comes to assisted ventilation for, among others, patients with Muscular Dystrophy. “In general, virtually nobody who can speak should ever recieve a tracheostomy tube because of muscle weakness. And those who have them should consider having them removed,” says Dr. Bach (his official webpage).

However, through her performance on The X Factor Sarah has efficiently debunked the myth that a tracheostomy and ventilator hinders speech. This can potentially save lives of children and adults alike who have hitherto often made decisions regarding traches based on wrong information and chosen heaven over a healthy, active life with a trache. With the right care and ventilator settings people with traches can not only speak - they can sing!

As of 11/05/15, 75 people with various neuromuscular conditions have written letters about their lives. Here is some enlightening data presented so beautifully thanks to -

Jessica Maloney (Research/Content) & Ali “Kittylegs” Ramos (Graphic  Design)

Image Description: A colorful info-graph with seven different mini graphs with a black border over a white background.

Banner on top with light blue background reads: “Dear Julianna,” in black cursive writing. Banner continues in white text, “As of 11/05/15, 75 people with various neuromuscular conditions have written letters about their lives.”

Top left mini graph features orange background and heading text reading, “We’re from all around the world!” There are five different countries shown in different colors: Canada (red), United States (turquoise), Great Britain (purple), Slovenia (light blue), and Denmark (green).

Top middle mini graph is a pyramid featuring different age ranges. In black cursive up the left side of the pyramid is the word “Ages” in black cursive. The pyramid states from bottom to top: 3 are between 13-17 (light blue). 17 are between 18-24 (green). 12 are between 25-30 (orange). 14 are between 30-39 (red). 6 are between 40-49 (light blue). 1 is between 50-59 (green). 3 are between 60-69 (orange). Top of pyramid states 2 are 70+ (red).

Top right mini graph is a graph with a basic drawn image of a happy family, featuring a man, baby, person in a wheelchair raising their hands up in excitement, and a woman. There are five different colored circles surrounding the family reading: 4 have grandchildren (turquoise), 10 have children (light blue), 5 are in a long-term relationship (green), 5 are engaged (orange), 13 are married (red).

Bottom left features a graphic of red lungs with a green background. Text in cursive reads: 15 have tracheostomies. 24 use noninvasive ventilation for a portion of the day and/or night (i.e. BiPaps or Sip ‘n’ Puffs).

Bottom middle mini graph features a graduation cap in a turquoise circle with three circles coming off of it. These circles read: 7 are currently in college (light blue), 22 have completed an undergraduate degree (orange), 4 have completed a master’s degree (green).

Bottom right features text with an orange background. Text reads: “38 are employed. This includes: 5 lawyers. 4 artists/graphic designers. 4 writers. 1 therapists. 1 motivational speaker. 3 business owners. 3 founders of non-profits. 1 member of the Danish Parliament. 3 teachers. 2 comedians. 1 film director. 2 actors. 9 disability advocates.”

Across the bottom is an arrow graph pointing to the right. In black cursive across it reads: “Medical professionals predicted that:”
From left to right are 6 facts reading: 8 would not live past the age of 2 (light blue). 4 would not live past the age of 3 (green). 3 would not live past the age of 4 (orange). 5 would not make it out of childhood (red). 2 would not make it past adolescence (turquoise). 2 would not make it past the age of 20 (purple).