I started this post shortly after Ellie got her trach to help others understand life with a trach better, but I felt like I still had so much to learn myself that I put off finishing it until I was a more experienced Trach mom. I started working on it again during Ellie's last hospital admission, but never got it finished before she died. Now as I've returned to work and am taking care of other trached kiddos I have a desire to finish this post to document a little about life with Ellie's trach.
A common response I got when I initially told people my daughter had a tracheostomy was, "Oh, is that what the smoker lady on those commercials has?" While technically that was true, I have always hated that comparison. Those commercials were made to scare people by showing the horrible and scary consequences that could come from smoking and made a tracheostomy out to be something gross and disgusting. Ellie and her tracheostomy were neither gross nor disgusting. As a matter of fact, Ellie was somewhat of a poster child for adorable trach babies. When she was readmitted to the hospital with rhinovirus just weeks after getting her trach I was approached by one of the doctors who had followed Ellie during several of her admissions. He said he didn't usually do this, but he had a favor to ask me. There was a very young couple whose baby was in need of a trach, but neither one of them had any idea what a trach even was. The more they tried to explain it to the parents the more terrified they became. The doctor said he kept thinking about darling little Ellie and if they could only see how adorable and happy she was that they would feel so much better. He asked if I would be okay having them come down and meet Ellie and if I would be willing to talk to them and answer any of their questions. Of course I said yes. The visit was a huge success, not only for them, but for me, too. The fact that others saw Ellie as a prime example of a perfect trach baby along with the doctor's praise of me being one of the most knowledgeable and capable new trach moms he'd ever met (which was debatable, but it was just the confidence boost I desperately needed at the time) lifted my spirits that were pretty low at that point.
The thing that makes a tracheostomy seem so scary to most people is not understanding it. So I am going to attempt a brief overview of what a tracheostomy is and the care it requires.
A tracheostomy is a surgically created hole through the front of the neck into the trachea (windpipe). This is done for a variety of reasons including bypassing a problem or blockage in the airway or prolonged mechanical ventilation.
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| Ellie's Stoma |
The opening in the neck is called the Stoma. A tracheostomy tube is a curved tube that is inserted into the stoma to keep it open and allow ventilation to occur through it. There are several different kinds of tracheostomy tubes that have different features for different purposes.
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| Bivona Flextend |
When Ellie first had her trach placed they used a Shiley which sits right against the neck under the chin. Because of her short neck it was really difficult to access and clean around the trach and after just a few days it was causing skin breakdown under her chin. So they switched her to a Bivona Flextend which is more commonly used in infants and children. The flanges sit against the neck to hold it in place, but a longer extention tube allows for the end of the trach to hang below the chin. The Bivona Flextend was a much better fit for Ellie.
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| Shiley Trach |
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| Bivona Flextend Trach |
Trach ties are the neckbands that hook onto the flanges of the trach with velco straps and fasten around the neck to keep the trach securely in place. The trach ties should be secured tight enough that a finger can snuggly slide between the neck and tie. Tighter than that can cause skin irritation and looser than that could allow for accidental decannulation (the trach tube coming out).
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| Trach Ties |
After the trach tube is secured with trach ties, a 2x2 drain gauze (a piece of gauze with a premade slit in it) is tucked under the flanges to absorb moisture and secretions and protect the skin.
One of the most important parts of caring for a tracheostomy is keeping the skin around the stoma clean, dry, and intact to reduce the chance of infection. We referred to this as Ellie's "trach care" which is done at least every morning and night. Trach care is done by removing the gauze and cleaning under the tracheostomy tube and around the stoma with sterile water and cotton swabs before placing a clean gauze. Every morning the trach ties are changed during trach care. This requires a little more skill because you have to hold the trach tube in place while undoing and changing the ties so that it does not accidentally come out. If you think changing a wiggly baby's diaper can be tricky, you should try changing a wiggly baby's trach ties. It is no easy feit and for the first few months was a two person job for us. I remember when we were in the hospital being trained on Ellie's trach care and it would take Scott and me 30 minutes to get through Ellie's trach care and we would literally be dripping with sweat by the end. I had a hard time believing the doctor when he told us that doing Ellie's trach care would become as natural as doing her hair every morning, but it really did. Eventually we got good enough that one of us could do trach care on our own in a matter of minutes. Ellie always had a very clean trach that was easy to care for and we never had any problems with skin breakdown or infection around her stoma. For other trach kiddos it can be a constant struggle and issue. I'm grateful it wasn't for us.
(If you would like to see a video on trach care click on this
link).
The most critical skill that must be learned by anyone who will care for a trached child is how do a trach change. For a lot of people this is an intimidating part of caring for a trach. There are two types of trach changes: routine and emergent. Routine trach changes are done weekly. You remove the trach and replace it with a clean one. You want the procedure to be as close to sterile as possible. We always tried to have two trained people present for each trach change in case anything went wrong. Before my first trach change a respiratory therapist told me it felt like putting in an earring and I found that to be very true and helpful. Truthfully I grew to love and anticipate our routine trach changes because for a few seconds each week, between taking out the old and putting in the new it was like someone turned off the mute button and we got to hear Ellie's true voice. Even though most of the time it was in the form of crying, it was still magical. If you are interested,
this video shows the process of a routine trach change.
An emergent trach change would occur if there was a mucus plug (thick secretions occluding the trach tube) an accidental decannulation (the trach tube coming out) or any other situation where their airway was compromised or they were struggling. There is a saying they ingrained in us during trach training "when in doubt, change it out". For this reason we had to have a spare clean trach and all of the supplies for a trach change with us at all times. We only experienced two accidental decannulations with Ellie, once in the car and once in her crib during a nap. Both times were pretty intense and scary, but served as a good reminder for us that we always had to be ready.
When you or I breathe through our mouth and nose, our upper airway warms, cleans, and moistens the air we breathe. Breathing through a trach bypasses these mechanisms so that the air entering the lungs is cooler, dryer, and not as clean. This creates several important aspects of caring for a trach.
First, in response to these changes, the body creates more mucus. The increased amount of mucus requires frequent suctioning to keep the tracheostomy tube clear and patent.
There are different systems and protocols used for suctioning depending on the child's suction needs and the supplies provided by your DME company. We used suction catheters with plastic sleeves on them to keep them clean between uses and then changed them out each day. Before you ever suction it is important to know the safe suction level. This is the measurement on the catheter that correlates with the depth to insert the catheter so that the tip barely pokes out of the end of the trach tube without hitting the carina (where the airway bifurcates) as this can be very painful and cause damage to the airway. While keeping the catheter as sterile as possible you insert the suction catheter to appropriate depth, cover the suction port with your thumb to activate suctioning, then twist catheter in a circular motion while slowly pulling it out. Sometimes it requires 2-3 passes to clear out all the secretions. If secretions are too thick or deep to clear it might require a lavage where you squirt 2-3 drops of saline into the trach to loosen secretions then immediately follow with suctioning.
Ellie always had a good amount of secretions which created a constant gurgly sound with her breathes. As someone who genuinely struggles with misophonia, which literally means the hatred of sound, the constant gurgling noise caused a lot of anxiety in me at first. Because of my dislike of the noise, my natural instinct was to suction, suction, suction until the gurgle was gone. I was quickly taught, however, the importance of not over suctioning which can actually lead to an increase in mucous production. Figuring how much suction Ellie needed without overdoing it had a bit of a learning curve for us, but slowly we got to know Ellie's normal and became more comfortable in knowing when she needed suctioning. Eventually we grew accustomed to her gurgly sound and even learned to love it as it became Ellie's voice. The gurgly sounds Ellie made were not typical for babies to make and it was one of the things that made people feel uncomfortable around Ellie. We often had people ask if Ellie was okay because of a noise that she would make that was perfectly normal to us, but alarming to others around us. Our portable suction machine that was never far away from Ellie was bulky, heavy, and extremely loud and obnoxious. It was impossible to suction Ellie without drawing the attention of everyone around. These things sometimes made it uncomfortable to go places like church or the store knowing we would get all sorts of odd looks when it came to Ellie's secretions and suctioning.
Our Elf on the Shelf was practicing his suctioning on Ellie's trach bear.
Ellie loved the sound of the crinkly plastic on her suction catheters and was always trying to get to them so finally we started just giving her spare ones to play with so we could keep her actual suction catheter clean.
Second, without the upper airway moistening the air breathed in through the trach, artificial humidification is required to keep lung tissues and secretions moist. This can be done in several ways. Ellie's main source for humidification was her trach mask, also called a trach collar or humidification mask.
Ellie's trach mask consisted of an air compressor which blows air through a heated humidification bottle filled with sterile water which creates humidfied air that travels down several feet of corregated tubing and out the trach mask which covers the trach. In Ellie's case, extra oxygen was also administered with the humidification. When Ellie first got her trach she was extremely dependent on the humidification from her trach mask and could only be off of it for short periods of time or her secretions would thicken and become difficult for her to manage which would increase her work of breathing and oxygen requirements. Since the air compressor is not portable and the tubing cannot be more than a few feet long this meant we were literally tied to Ellie's crib all the time. As she got bigger and stronger and her lungs recovered from all the damage that occurred from aspirating the first 2 months of her life, she was able to tolerate being off her trach mask more and more each day. We did learn that the lack of humidification didn't always have an immediate effect, but rather her secretion's reflected the humidification from 24 hrs prior. So if we had to go to a doctors appointment or braved an outing with Ellie and she was off her humidification for longer than usual, she might handle it fine at the time, but the next day her secretions would be thicker, she would require a lot more suctioning and have to work harder to breathe, and would require her trach mask all day. After moving to Omaha we noticed that Ellie did not require near as much humidification as she did in Utah. I think part of this was due to her getting bigger and stronger, but I also think the humid climate of the midwest helped. Most days she could get by just being hooked up to her trach mask during her naps and when sleeping at night. With this new found freedom we were able to go on much more outings with Ellie without paying the price for it the next day. Any time that Ellie got the littlest bit sick, though, she would need the trach mask around the clock in order to avoid getting mucous plugs.
What our day to day life looked like tied down to the trach mask.
The trach mask system was definitely our most high maintenance piece of equiptment. All the parts of it had to sterilized and/or switched out at least weekly to prevent any bacteria from building up in it. The humidification bottle had to be filled to a specific level. If it dropped below it than Ellie would not receive adequate humidification. The heater we had was inconsistent and temperamental so we had to continually be monitoring the temperature with a thermometer near the end of the tubing to make sure it was warm enough but not too hot. The tubing needed to stay as close to level as possible for optimal humidification. If it wasn't than condensation collected in loops of tubing and could potentially be dumped out on Ellie with the risk of her aspirating the water through her trach. There was a collection bag in the middle of the tubing to help prevent this, but that required regular emptying. There were so many factors that went into Ellie getting the right humidification to keep her lungs healthy and strong.
When Ellie wasn't hooked up to the trach mask then we used an HME (heat moisture exchanger) also known as an artificial nose.
It is called an artificial nose because it replaces the nose's function of filtering and humidifying the air breathed through the trach. It creates humidity by trapping the moisture that is blown off with exhalation in the chamber which the inhaled air will then pass back through and pick up. It does require more work to breathe through an HME and doesn't provide as much humidification so some people tolerate it better than others. As I mentioned before, Ellie only tolerated wearing the HME for short periods of time at first, but as she got bigger and stronger she tolerated it more and more. It was important to monitor how moist the paper filters got because if they got too wet or gunked up with secretions then it would be like breathing with a wet washcloth over your mouth. Because of Ellie's amount of secretions we went through several HMEs a day. At $5 each, it was a battle with our insurance and DME to get approved for more than 1 a day, so sometimes that alone was a limiting factor on how long she could be disconnected from her trach mask.
This leads me to the third aspect of trach care, which is filtering the air. Remember that a tracheostomy tube is direct access into the lungs. So a big part of caring for a trachestomy is making sure nothing gets in it that shouldn't be going into the lungs. This includes water, smoke, dust, lint, hair, the list could go on and on. A guideline that we were given was that Ellie should not be in any environment where an aerosol or particle can be seen in the air. This meant she couldn't be around when I was cleaning with sprays, she couldn't wear clothes or use blankets or stuffed animals that shed or had lint, she couldn't take real baths or swim. One respiratory therapist totally freaked me out by telling us we had to be careful not to let flies in the house because they loved warm, moist, moving air and could very easy fly up the trach into her lungs. Wearing the HME helps filter bigger particles and prevents things from going in the trach, but it doesn't filter out all the dusts and particles in the air. This was another very limiting factor on where we could go and what we could do with Ellie. For example, on the Fourth of July, I had Ellie outside with everyone, but once we started doing fireworks and clouds of smoke started to form I had to take her inside.
I have already done a post on why Ellie did not have an audible voice with her trach and the use of a speaking valve. You can find that information
here.
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| Ellie with her Speaking Valve on. |
There are so many things you have to consider and be prepared for everywhere you go with a trached kiddo. Because of this it is required that you take a "trach bag" everywhere with you. We were given a trach bag in the hospital with the essentials but quickly found that there were additional things we needed. We eventually ended up getting a Utility Tote from Thirty-one that could fit our portable suction machine, all of Ellie's trach supplies, feeding tube supplies, and normal diaper bag items in it. It weighed a good 25-30 pounds when all packed up and went EVERYWHERE with us.
This is just a brief (I know that there is actually nothing brief about this post) overview of caring for a trach. As you can see life with a trached child is extremely complex and has many limitations. From the moment Ellie got her trach I started looking forward to and dreaming about the day she would get her trach out. If Ellie could just get her trach out our life would be so much easier. I found myself putting life on hold and telling myself we'll do that when Ellie gets her trach out. I honestly expected that Ellie would get her trach out by the time she was 2-3 years old so it seemed best just to hunker down and get through those years and then we could really start living. As time went on, though, I started to realize that life with Ellie was only going to get harder. Having a baby with special needs is a whole lot different than having a 5, 10, or 15 year old. The fact that Ellie couldn't walk or talk and was developmentally delayed didn't matter much as a 1-year-old. But have a 5-year-old who can't walk and a 10-year-old who can't talk is a much bigger challenge. I realized that these early years were the prime of Ellie's life and we needed to be enjoying them trach and all. So I did my best to fill our summer with the kind of experiences I wanted Ellie and my other kids to have. We went to the zoo, the children's museum, the swimming pool, the library, the park, and even sent Ellie down the slip 'n slide with Mason. It took A LOT of work to go on the simplest of outings and there were many times I would be shedding tears of exhaustion and frustration by the time we were in the car to go home, but I felt the need to make memories NOW. As difficult as it could be, I guess we were doing a pretty good job because there were many people around us who did not understand how truely difficult everyday life with a trach baby was. I actually had one person, after spending a couple days with us, tell me that life with Ellie wasn't as hard as I was making myself believe it was. This comment didn't sit well with me, but I tried to take it as a compliment that we had gotten so good at life with Ellie that we made it look a whole lot easier than it actually was.
When I took Ellie to her new ENT in Omaha, Dr Goebel, she was healthier and doing better than she had in her entire life. There was a big part of me that thought she could be getting her trach out sooner than later. After her initial assessment of Ellie, Dr. Goebel agreed. She was very upbeat and optimistic at how well Ellie appeared to be doing with her trach and said she might be ready to get this trach out! She wanted to do a quick scope of her upper airway to see how her laryngomalacia was doing. We went into the procedure room and I helped hold Ellie while Dr. Goebel did put the camera through her nose down to her larynx. As the camera went in Ellie fought and cried hard and Dr Goebel got quiet. Her whole demeaner changed as she finished the scope. After she was done she sadly told me that while Ellie's laryngomalacia was looking better, the back of her throat was extremely hypotonic and was completely collapsing down just with her crying. She said that based on what she saw Ellie still needed her trach and she probably would for quite awhile. She said she could very well see Ellie getting to the point where she was capped all day, but would likely never pass a sleep study required to remove the trach. This made sense to me since so many of our 4p+ friend struggle with major sleep apnea issues. It was not the news I was hoping for and hit me hard, although not as hard as I would have expected. I guess, in away, I had already decided we could be happy with Ellie's trach and so I was okay with it.
Since Ellie's death I have had several people referred to me by friends when their child was getting a trach. Truthfully I feel completely inadequate to give any type of advice or direction to these parents because clearly we didn't do a very good job or Ellie would still be here. I don't write this post as any type of direction on how it should be done, but simply to document Ellie's trach and how we cared for it. We may not have been perfect, but I can truthfully say I gave it all I had.
