Speaking After My Accident

Part 2/2

(It is recommended that you read 1 first by clicking here.)

Earlier this year I received this question in my blog comments:

Question: Do you use or have you tried the Passy-Muir speaking valve? I have used their speaking valve since being trached and vented 13 years ago with great success. There was another man that presented with me who was a quad and had tried using the speaking valve but found it difficult so he wasn't using it. I have MS and it has affected my respiratory system so I am vent dependent 24/7.

Here is an official description of a Passy-Muir Valve. The bolded words within the descriptions only apply to me. I’ve also put a summary of the description in my own words in parentheses.

What is a Passy-Muir Valve?

 Invented by a patient named David Muir, the Passy-Muir^® Valve is a simple medical device used by tracheostomy and ventilator patients. When placed on the hub of the tracheostomy tube or in-line with the ventilator circuit, the Passy-Muir Valve redirects air flow through the vocal folds, mouth and nose enabling voice and improved communication. Years of evidence-based research has shown that the Passy-Muir Valve offers patients numerous clinical benefits beyond communication, including improved swallowing, secretion management, and oxygenation.

Why use a Passy-Muir Valve?

"No Leak" Design
 

The patented "No Leak" design of the Passy-Muir® Valves means that the valve is always in a closed position until the patient inhales. The valve opens easily with less than normal inspiratory pressures and closes automatically at the end of the inspiratory cycle without air leak and without patient expiratory effort.

(In other words, when a breath comes in, the valve opens and then closes directly afterwards. The air has no other place to go but completely out my mouth or nose. This allows me to direct the airflow which way I want it, allowing me to increase volume and talk easier. Without the valve, the airflow can go back down into the tubes or leak around my trach, ultimately making it harder to talk with less breath.)

Closed System

Unlike open position speaking valves, the closed position of the Passy-Muir Valve allows the patient to create a positive airway pressure and restores the patient to a more normal "closed respiratory system". The "closed system" also creates a protective column of air in the tracheostomy tube which resists secretions from moving up the tube and occluding the valve. Instead, secretions may be coughed up around the tube and expectorated or suctioned from the mouth.

(The valve has helped greatly improve my secretions. I’m now able to cough most of them up instead of having to suction them out through my trach. Over time, suctioning can be tough on my trachea and may cause scars to occur.)

http://www.passy-muir.com/what_is

***

The question proposed at the start of the post makes me think back to the beginning, the weeks after my accident and learning to speak again. Next, I posted some pieces of journal entries that my family made on a Caring Bridge website that was set up for me after my accident. It’s interesting to read the progress I made and also explains part of the answer to that question. The "Valve" that they’re talking about is the Passy-Muir Valve described above. Be in mind that my accident was November 1, 2002.

***

Sunday, November 17, 2002 at 09:36 AM (CST)

We would like to devote this journal entry to educate you about Jenni's injury and present physical condition. Jenni suffered a compression injury to her neck, specifically her spinal cord in her cervical vertibrae,(C1-C2),at the base of her neck. As a result of this injury, she does not have voluntary control of any muscles below this point, including her diaphram. She is on a ventilator to provide her breathing. Above the point of injury, she is completely functional with the exception of her voice. The ventilator tube enters her trachea below her vocal cords. Eventually she will learn to pass air across her vocal cords allowing her to speak with sound.

 

At this time there is nothing surgically or medically available to repair spinal cord damage. None, partial or full regeneration of the nerve cells may happen, but only time will tell. You can learn more about her type of injury by visiting www.spinalcord.org. A link is provided below.

Wednesday, November 20, 2002 at 07:49 AM (CST)

Jenni also received her long awaited new trachea tube. This one is much smaller and much more comfortable for her. A speaking valve was temporarily installed, and she worked her vocal cords for about 15 minutes. It was nice to hear her sweet voice

Friday, November 22, 2002 at 08:31 PM (CST)

At this point there has not been any sign of improvement to Jenni's spinal cord, nor does she have any sensation below the point of injury. She still requires a ventilator to breathe. Regardless, we are filled with so much hope as we look for just one little sign of improvement, and we are so thankful to have our Jenni in our lives, and in yours.

Sunday, December 01, 2002 at 11:45 AM (CST)

This morning the RT removed some air from Jen's trachea tube allowing her to speak without the valve. She is doing a wonderful job of adjusting. Now she can speak at will, anytime. Soon they will remove all the air allowing air to pass over her vocal cords all of the time.

Monday, December 02, 2002 at 07:39 PM (CST)

Jenni has made some very big strides the last couple of days. The Staff has removed almost all of the air,(actually water in this style), from her trachea insert. Picture a small tube inserted into a larger tube. In this case the small tube is the trachea insert, the large tube is Jenni's actual trachea tube. Around the small tube is a cuff, or balloon containing water. Inflated this cuff seals the trachea tube allowing air to enter and leave only through the small tube. Deflated, it allows air to enter the small tube, but exit past her vocal cords.

Jenni has found the joy of talking again-anytime she wants! She's loving it and so are we.

Tuesday, December 03, : on 2002 at 09:59 PM (CST)

Wow! What a difference a day makes. Yesterday we explained how some water was removed from the cuff in Jenni's trachea insert allowing her to talk...freely...anytime she wanted...and she did...all day...til she was hoarse. Today they removed all of the water from the cuff. She talked, and ate applesauce, and talked more, and drank 7up, then talked about mashed potatoes and how good they would taste, then got mashed potatoes from the cafeteria and ate them, then talked about how good they tasted. What a difference a day made.

It is so inspiring to witness this amazing young lady work with this condensed version of the larger life she had been used to prior to the accident. Jenni is truly one of God's finer children and may the whole world get to know her some day...she would make a difference.

***

After trying the valve a couple of times and it not working for me, I told myself I would learn to speak without it. Ever since then I’ve been using my voice to do motivational speaking, direct cares and command my wishes whenever need be. However, over time my voice has gotten softer and softer. In Part I (the previous blog post) I explained the reason why:

 

***

There are many different types of traches. The one that I use has a cuff on it. The cuff is actually a balloon that gets inflated using air or water. It is around the stem of the trach. To better explain this, I have posted a picture below. It explains what the water does when the cuff is inflated. When the water gets taken out, every trach is different. For me, I have a huge air leak around my trach so if the water is taken out, most of the air escapes around my trach instead of out my mouth like it’s supposed to. I keep 3 mL of water in my cuff at all times to prevent this from happening; when all or most of the air gets diverted out of my mouth, it allows me to speak better and more clear. However, over time my stoma (the hole my trach is inserted in) has stretched so far that the leak has become more prominent even with water in my cuff. If more water is added, it leaks even further around my trach, diverting it away from my mouth and nose and I’m unable to speak loud enough. The leak also increases because the air needs someplace to go.

***

Due to the leak around my trach, I’m unable to speak as well as I used to be able to. This makes it difficult to do the things I noted above. Having a voice is everything to me. Being paralyzed from the neck down, I depend on my voice for multiple things. Being unable to use it properly had been heartbreaking. People started to not be able to understand me because I was talking so softly. Enter in the Passy-Muir valve!

Before I went into the hospital seven weeks ago, I visited a friend who has the same injury as mine and is also on a vent. I noticed he was speaking a lot louder than I could and he was also talking between his breaths (something that was difficult for me to do). He said he was using the valve and that made a huge difference in the way he spoke. I got very excited and wanted to try it ASAP.

After being admitted to the hospital and having respiratory therapists around me every four hours checking my vent settings, I finally asked one about the valve. He brought one in right away and I tried it and instantly noticed a difference. I could say the ABCs sequentially without waiting for another breath to come. I can definitely say I found my voice again. Now I use it every day and don’t like when I have to take it out. It’s amazing what a small device can do to improve the quality of one’s life.

I know these posts may be a bit confusing to some of you who may not be familiar with trachs or even speaking on a ventilator. I encourage you to write a comment or propose a question and I would be grateful to answer it. Let’s see if we can’t get a little side conversation going about this subject!

***

Thank you for all your support in me and my blog over the years.

Jenni

Trach 101

Part 1/2

I've received a couple of questions regarding speaking with a ventilator and trach that I wanted to answer. First, I'll talk about me and go over some basic 101 about trachs.  The post after this will talk about speaking after my accident.

I'm considered a vent dependent quadriplegic; I require the use of a ventilator 24/7. This is a result of the level my injury is at, which is C-1 C-2. When an injury occurs at the C-1 level (the vertebrae closest to the skull), most likely it will affect the person's breathing. In this case, intubation is required. A tracheal intubation, commonly known as intubation, is the insertion of a flexible plastic tube that goes down the throat to maintain an open airway. Then with the use of a ventilator a person is able to sustain breathing. While in the helicopter on a way to the hospital they had to intubate me.

Two days later, after finding out the extent of my injury, the doctors took me to surgery to remove the tube and do a tracheostomy. A tracheostomy consists of making an incision in the neck and opening a direct airway through an incision in the trachea. The stoma that results from this can independently act as an airway for a tracheostomy tube (trach) to be inserted, allowing the person to breathe without the use of his or her nose or mouth. A ventilator can be attached to the trach or it can become the actual place a person uses to breathe. People can have trachs for different reasons, not just spinal cord injuries. An example would be someone with muscular dystrophy, someone who had/has throat or lung cancer etc.

My trach stays in the majority of the time, unless it's being changed. In that case, my nurses do a trach change by taking out the old one and inserting a brand-new sterile one. Depending on the person (age and size) depends on how often the trach gets changed. They change mine every three weeks, or unless it's needed before that. An instance where I would have to have my trach changed before the date would be if there was a mucous plug inside of it blocking my airway. This has happened before to me in which someone has had to do an emergency trach change (sometimes suctioning doesn’t clear this secretions as fast as just changing it does).  Trachs are pretty expensive, so many people sterilize them again in boiling hot water and reuse them.  Since I don’t do it very often, I just throw it away every time it gets changed.

I rarely have to suction anymore; usually every couple days or so.  That’s not very much for someone who has a trach and is vent dependent.  I don’t get big mucous plugs anymore and haven’t had to do an emergency trach change in years.  Now I just change it during the scheduled times.  Although my situation is complicated, I try my best to say as healthy as possible.  This includes staying away from smoky environments along with avoiding others with colds or who are sick. 

There is a machine that I have called a cough assist; it attaches to the trach like the vent tubing does.  I use that twice a day.  It blows air into my lungs and then pulls it back out.  The cough assist has done wonders for me, including clearing my lungs.  Usually it brings up secretions which I then either suction or cough out.  This is most of the reason why I don’t have emergency trach changes anymore.

Cough assist machine

There are many different types of traches.  The one that I use has a cuff on it.  The cuff is actually a balloon that gets inflated using air or water.  It is around the stem of the trach.  To better explain this, I have posted a picture below. 

 

This is a picture of my trach.  The cuff is attached by a string (shown floating above the trach).  The balloon is around the bottom of the trach.  At this point it is not inflated.

This is what it looks like when the cuff is inflated.  It closes off the airway in the trachea so air cannot come out the mouth or nose.  It all gets diverted back down the tubes, making it so that the person cannot speak.

I don't keep enough water in my trach for it to completely close the air from coming out my mouth and nose. The balloon can hold at least 5 mL, however I only keep 3 mL. For me, I have a huge air leak around my trach so if the water is taken out, most of the air escapes around my trach. That's why I keep 3 mL of water in-to prevent air from escaping around my trach instead of out my mouth and nose like it's supposed to. That's how I'm still able to talk. When all or most of the air gets diverted out my mouth, it allows me to speak better and clearer.

 

Over time my stoma (the hole my trach is inserted in) has stretched so far that the leak has become more prominent even with water in my cuff.  If more water is added, it leaks even further around my trach, diverting it away from my mouth and nose and I’m unable to speak loud enough.  The leak also increases because the air needs someplace to go.

*A tracheostomy is an opening into the trachea (windpipe) that allows air to be pumped directly into the lungs. Many trach tubes are fitted with inflatable cuffs, which, when deflated, allow air to pass over the vocal cords, making speech possible. When the cuff is deflated, air "leaks" up around the tube and less air gets into the lungs, but many people can tolerate this air leak with adjustments to their ventilation system.
http://faculty.mercer.edu/summervill_j/jeanchiang/itisallaboutme.html

Question: Do you know why some people use a vent and a trach that dowake up Dragon esn't allow them to speak? I heard of someone with muscular dystrophy who had a vent and 'cuffed' trache which could be set to allow her to speak or not, but she usually had it set not to (during an interview she had the cuff set so she could). Is it a matter of money or of medical necessity?

Answer: No, it is not a matter of money.  It may be a matter of medical necessity or just a preference.  As I explained above, I use water in my trach cuff to prevent leaking around my stoma and trach.  In this case she uses a cuffed trach and prefers (or needs) to have it inflated fully, which takes away her ability to speak.  Either way, not all people with trachs have a cuffed one.  Like I said, there are many different types of trachs; I just named one kind.

Stay tuned for the continuous to this post coming up soon!

Jenni