EPISODE 239

[INTRODUCTION]

[00:00:01] MD: So today's gratitude entry. I feel like every week it's like what crazy thing is transpiring this week? Okay. But today's gratitude entry is for a podcast review. And I told y'all, I read every single one of these. And I am so grateful for Megfay220. Also, these names, I love how creative these names are. Her review is, "I love this podcast!!" Exclamation points and a smiley face. I love a good smiley face. She shares, "So grateful for the knowledge and expertise in this podcast. Thank you for your kindness, generosity and willingness to help families, children and SLPs." Yes. Yes and yes. We reach out and try to bring the experts to y'all so that way you can consume and expand your EBP triangle on the go, hopefully, safely while driving. 

And y'all, today's guest is Dr. Kristin King. And she's just this brilliant, passionate woman in the trach and vent world. And we don't always think about that impacting our PEDs patients. But it does. And so, I am hoping that this is another amazing episode that will inspire you. And trust me, I don't always know the technical questions. Like what's the thing hanging off the trach? There's like a balloon. And then do you blow this up? And how do you pull it out? I don't like this. It makes me very nervous. But she's the person I want in my corner to help me learn to be a better therapist. It's always thank you, thank you thank you for your kind words and your reviews. Megfay220, thank you.

[00:02:02] MD: Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A Speech Therapy podcast sponsored by speechtherapypd.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP CLC, the All-Things PEDs SLP. I am a colleague in the trenches of home health and early intervention right there with you. I run my own private practice, Hartwood Speech Therapy, here in Colu Town, South Carolina. And I guest lecture nationwide on best practices for early intervention for the medically complex graduates. First BiteÕs mission is short and sweet; to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[00:02:49] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[00:02:53] MD: In this podcast, we cover everything from AAC to breastfeeding.

[00:02:57] EF: Ethics on how to run a private practice.

[00:03:00] MD: Pediatric dysphagia to clinical supervision.

[00:03:03] EF: And all other topics in the role of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[00:03:12] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[00:03:18] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[00:03:22] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[00:03:33] EF: Every fourth episode, I join. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

[00:03:53] MD: Sit back, relax, and watch out for all hearth growth and enjoy this geeky gig brought to you by speechtherapypd.com.

[EPISODE] 

[00:04:09] MD: Hey, everybody. And welcome back to our month of Dysphagia Awareness Month. Because that's what June is. It's Dysphagia Awareness Month. Honestly, May just felt so much busier because we had 400 other things going on in May. But June is just Dysphagia Awareness Month. And we have none other than Dr. Kristin King, who is the vice President of Clinical Education and Research for Passy-Muir. 

And we did a podcast swap. Because I don't know if you know it or, not but Passy-Muir has a podcast. And we'll get her to talk about that. But she's going to come on and talk all about tracheostomies with us. Because this is something that, let's be frank, most of us only had brief academic exposure to in graduate school. And very few of us have had actual clinical exposure and experience too. We are going to cover this and so much but Dr. Kristin King, thank you for coming on. 

[00:05:09] KK: Thank you, Michelle. I'm excited to be here. 

[00:05:11] MD: Yes. Okay. I always ask everybody. Give us your backstory. What made you want to be a speech pathologist? And how in the world did you decide to focus on the thing that it is that you do? 

[00:05:27] KK: Oh, I'm going to try to make that story short because it could fill up the whole hour. I actually started out as a high school English teacher. And I did it for a few years. Well, three years. And I could not see myself doing it for 30 years and taking that to retirement. I was trying to figure out what to do and it was actually my mom who said, "Have you ever looked at speech pathology?" And I said, "What is that?" I didn't even know Ð I've not met a speech pathologist. I didn't know what the field was. And so, I observed with our school speech pathologist after I found out there was such a thing. I observed some. And I was like, "Hey, I like this." Because what I taught was high school English. And I still got to use the language. It's a lot of what I had learned as an English teacher and as a major for English education. I didn't lose all of that. I got to keep it. 

That got me started. And I did my master's and then I worked in two level-one trauma centers for a number of years. I fell in love with the medical side. And I started out Ð oh, sorry. I got to backtrack. In high school, I wanted to go to medical school. But I fainted at the sight of blood. Medical school is probably not the best option. And I ended up in English education. And then the track I just told you, to get to speech pathology. But ironically, when I found out there was a medical side to speech pathology, that's where I focused. In my master's program, I did two intern placements in a medical facility. Loved it. That's where I started working. And I primarily worked in the hospitals. And then, though, after a few years, I had this question of why do we do what we do? And a lot of times when I had asked someone, "Why do we do whatever this way?" They'd be like, "I don't know. We always have." And that was not a real good answer. 

So then I went back for my Ph.D. so I could answer that why question. And that took me to academia. And I was a professor for seven years. And then while I was a professor, I taught medical speech pathology courses. So it was still in the same realm. And then I got hired away by Passy-Muir and started working with them. And I still practice as a speech pathologist in that. That's my role as I oversee education for speech pathologists. I work on publications on the topics. I work Ð well, anyway. I still use my area of expertise as far as the speech pathology. And so, I've kind of gone the gamut. And as a speech pathologist, I worked a little bit in the schools. I did contract work in the schools. I did a little bit of home health. And then I primarily worked in hospitals. I've kind of covered the whole spectrum. 

[00:08:26] MD: Yes. And honestly, so many of us do. I have a secret theory that a lot of us have ADHD. We just don't want to admit it. Or, I mean, like I'm like the poster child for it personally. But we have the opportunity within our licensure to practice at the top tier. And what I see is that oftentimes Ð and this is honestly a podcast for another day, is that people misconstrue working at the top tier as working exclusively in high-pressure medical places. They don't realize that our top tier also includes working with advanced complex disorders even within the public schools. And as we're pushing pediatric feeding disorders Ð and not necessarily pushing. 

But we're finally embracing the research and the need for PFD to be treated in the public schools. It's driving speech pathologists in those settings to expand to their skill set. And as we're saving babies that we didn't save five, ten years ago, we have more students entering the public schools that have tracheostomies. And I got to be honest, it is at that point where one of those is placed that I still get squeamish. And I may or may not have had to excuse myself as a student intern to go throw up when I saw somebody's changed because of all the stuff that came out with it. I can't do that. I can do blood. But it can't do that. Whatever that is. 

[00:09:59] KK: Mucus, and secretions and stuff? 

[00:10:02] MD: Oh, yeah. It was a mucus plug. That's the word I'm looking for. Yeah. That is not my cup of tea. And so, there it is. Okay. Can you talk to us about what actually is the tracheostomy and the different parts? Thank you. 

[00:10:19] KK: Yeah. Happy to. So it doesn't matter pediatric or adult. The tracheostomy, the reason for it, et cetera, is the same. The tracheostomy occurs when a person is not able to Ð well, it occurs for multiple reasons. It could be they have a poor respiratory status. Whether that's from a disease process or an injury. But they aren't able to support the respiratory function. Or they don't have the respiratory function to support, I'll say, life. They just aren't breathing well for that good oxygen and gas exchange. It could be that they have the tracheostomy due to injury to structures. If they are anticipating a lot of upper swelling of like the face, or the airway, the throat. Anything that might have struck the airway then they might put a tracheostomy in. There are degenerative disease processes in adults like ALS and myasthenia gravis that lead to it. And then you mentioned our pediatrics, younger and younger. And that's really true, especially in the last few years, that as we have children born much earlier in life and we are able to sustain that life through medical intervention. 

Some of them are ending up with tracheostomies because Ð and it could be that, at the time of birth, their systems aren't developed enough to support life. And so, they end up on ventilators and, eventually, with a tracheostomy. It could be due to a disease process, or a syndrome, or something else that's complicating that respiratory function. And then what happens is they end up with the tracheostomy tube, which is placed in the airway usually at about the second or third tracheal ring. And the trach tube varies depending on the size of the patient. Of course, little infants have little teeny, tiny tubes. And then as you get older, the tubes get a little bit bigger. But the point is the same. The tube is placed in the neck so that the patient can breathe in and out through that tube. And we bypass that upper airway of using the mouth and nose. 

[00:12:28] MD: Folks if you're needing on the PEDs ends, I've had little ones that have had Perre Robin sequence, where they have extreme Micrognathia of their jaw. What that means is that their jawline, their mandibular jaw, their mandible is so recessed, pushed back so posteriorly that their tongue actually occludes and blocks the airway. So they can't breathe and provide their body enough oxygen through their nose, okay? I've had a couple of patients that have had tracheostomy tubes placed for that. I have colleagues that work at MUSC where they've had patients that went elsewhere in the state of South Carolina. Had their tongue tie cut by a dentist. And it resected it from the floor of the mouth. And then they had to have emergency tracheostomy tubes placed, which talks as a whole conversation for an entirely different episode, which I promise we will get to. But again, please read the consensus statement from the American ENT Association as to why we don't cut those. Except for in very rare experiences. But I'll go back. 

I've also had patients that have hypoxic-ischemic encephalopathy and congenital heart defects. Concurrent but also separate cases. One with Ð a couple with HIE and maybe they just have a congenital heart defect. But oftentimes, those complex past medical histories could result in a trach being placed. Now I give you those examples because you may find a child after they've had it removed and the site's been closed, which I do want to talk more about. Because I've had a lot of little ones that have had them for so long, they have to go and then have it like a graph put in. Ooh. Idiopathic subglottic stenosis. Am I using that Ð yes. my cousin has this. And just had part of her Ð look at me telling her business. 

She had part of her leg put in her airway to reopen her airway a couple of weeks ago. But it just kept closing. But those are also potential etiologies that we could see. And I had a little one years ago who had Wolf-Hirschhorn syndrome. And had her history included febrile seizures. But if she had a temperature of a hundred, she would start seizing in the hot South, right? I mean, that means we couldn't go outside. We couldn't do those things. But she had so much into trauma from a severe round of seizures that they contemplated having to place one. Those are also potential etiologies. Okay. I remember in class, they would talk about how, once a trach is placed, how it's going to impact their swallow. Can you break that down to bare bone basics for us? 

[00:15:25] KK: Yes. First of all, research has shown that the trach tube itself does not impact swallowing. 

[00:15:33] MD: [inaudible 00:15:33] for the people in the back. 

[00:15:36] KK: Yeah. I do want to make sure that's clear. Yeah. The trach tube itself Ð I will say it again. The trach tube itself does not impact swallowing or cause swallowing problems. Usually, what we're seeing Ð there's two things. One, you have to look at what the comorbidities are that are contributing to the swallow issue. Because that is going to be a piece of the puzzle. The other piece of that puzzle is what the tracheostomy tube is causing. And what I mean by that is we use pressure when we swallow. We use some glottic pressure. We have pressures that help drive the bolus through the pharynx into the esophagus. The esophagus is a pressure-driven system as far as moving that bolus down. And when we put the tracheostomy tube in and we open that system, because now we have basically an open hole in it, it's like when you pop the top on a can. If you get a canned soda, it's full of pressure. And you pop that top and all the pressure's gone. And you can crush that can if need be. And I'm plagiarizing. That's not the right word. That is not my original idea. That's for Mary Massery, a physical therapist who teaches a lot about the systems and the pressurized system, the abdominal thoracic pressures. And she has a soda pop can theory. And so, it's taking just some liberty with her theory. 

But to give you that example is you take the can, you pop the top. You've changed the pressure. It's the same thing when you put a tracheostomy tube in. You've put a hole in that system and we've changed the pressures. And research has shown that there's reduced subglottic pressure when a tracheostomy tube is in and it's open. You have reduced respiratory pressure. And the respiratory and the esophageal phases have an inverse relationship. When you have high pressure in the respiratory system, you have low pressure in the esophagus. When you have low pressure in the respiratory, you have high pressure in the esophagus. This is a well-known system or inverse relationship. It's actually used in some hospitals to regulate ventilator settings. They'll have esophageal manometry. And they'll look at esophageal pressures to help regulate ventilator settings. Because you have that relationship there. But when we put the trach tube in, we lose all of those pressures and those relationships. And so, what often can happen is that change in pressure could potentially negatively affect the swallow. 

And the types of things we see are increased residue at the cricopharyngeus and in the piriformis because there's not enough pressure to really open up that cricopharyngeal sphincter very well. At that upper esophageal sphincter, we end up with the food and liquid not passing through efficiently. We see, of course, penetration and aspiration because you don't have the subglottic pressure to help with that high laryngeal excursion in some patients. And so, they may not get that protection in the airway they need. We do know there can be changes in the swallow. But it's not the trach tube. It's the changes and the physiology of the swallow, and the pressure and how the swallow actually works. Does that kind of get at what you were asking me? 

[00:19:03] MD: Yes, ma'am. Yes, ma'am. Okay. But what about the cuff? Because that was the piece that always made me really nervous. Because I had Ð what was her name? I don't remember. But I interned a lifetime ago at Riverside Rehab Institute in Newport News, Virginia. And I just aged myself tremendously. But they would have patients Ð they had another floor on that healthcare system, right? It was a great big tower. And it was their rehab setting for like Ð they'd go for like 30 to 45 days. Totally fine. They can edit that out. They would go for like 30 to 45 days for like rehab. But there was a fourth floor that was like an [inaudible 00:19:43]. Where they would have patients come in that were too medically stable for a hospital but not yet ready for rehab. They were in that swing state in between. And it was the first time I ever saw a patient with a trach or someone with a cuff. And this was back in the day when we were still doing blue dye tests. I don't treat adults. But I know blue dye tests are now not a thing. Or they're being discontinued. And she was like, "You don't want to ever Ð" I can't remember the rules. Don't feed on an inflated cuff. Or you need to deflate the cuff or something like that. Can you tell us about that? 

[00:20:23] KK: Yeah. And that's a really good point. Because I was just talking about the tracheostomy tube. And the cuff is kind of its own animal to manage. 

[00:20:29] MD: Yeah. It's scary. I just remember you have to look to see if there's a butterfly around the Ð like an attached butterfly. That was what I remember from 20 years ago. 

[00:20:40] KK: Yeah. Well, one of the things to look for Ð there's two things. On the neck flange, which is the piece that's across the neck. It'll tell you if it's cuffed or uncuffed. So you can kind of read the wording there. But if it's cuffed, they're going to have what's called a pilot line. It's like a little tube that runs down about six inches. And at the end of that is a little what's called a pilot balloon. And that's where we can attach a syringe to inflate and deflate the cuff. The cuff is actually in the airway. Or it's a balloon around the trach tube. And the only purpose of a cuff is to seal the airway for mechanical ventilation. If a patient is on a ventilator, they will inflate that cuff to seal the airway so that 100% of their air is going in and out through the tracheostomy tube. 

What happens though, is oftentimes a patient gets a cuff and they're kind of stuck with it for an extended time. And the cuff itself can cause a number of problems especially if it's not properly managed. And unfortunately, that's the big issue. Because if a cuff is properly managed, it's not going to put a lot of pressure on the tracheal walls. You actually don't want pressure on the tracheal walls because that can lead to tracheomalacia, which weakens Ð that's a weakening in the tracheal wall. So they kind of collapse during breathing or collapse inward-some. And we see that a lot in pediatrics and a lot in infants. And we really don't want that tracheomalacia. And let me add a caveat. I'm not saying it's caused by a cuff in infants and pediatrics. You can have other causes of it. But a mismanaged cuff can lead to it. And what that does with swallowing is if that cuff is inflated, again, we have that hole in the system. The trach is open. And they're breathing in and out of that. So we have a loss of pressure, a loss of subglottic pressure. And if it's not properly managed Ð and what happens is, oftentimes, the cuff and the trach tube are kind of anchoring the larynx down. 

The reason we say to deflate the cuff during swallow is we want to restore airflow to the upper airway. Because without airflow to the upper airway, if that cuff is inflated, there's no cough, there's no throat clear, there's a decrease in sensation. All of this has been shown with research. You've got a decrease in sensation because you don't have airflow through that upper airway. And so, patients aren't going to be as aware of the things they're swallowing. Like if it goes the wrong way, if you have penetration or aspiration, their body may not even react to it because it can't. There's no sensing there for it. There's no way. They just don't sense it at all. And so, that is one of the primary issues with having that cuff is that lack of cough, throat clear, poor sensation, lack of subglottic pressure. And then the management of the cuff and whether it's properly managed or not. Yeah. And if we deflate the cuff, we restore some of those functions. And the patient has a little bit more on their side, I guess you could say, to swallowing better. Because now they're going to have that airflow. They're going to have some cough, some throat clear, some sensation because we've restored airflow to that upper airway with a deflated cuff. 

[00:24:10] MD: This seems like a good time to go ahead and ask this question. There are those of us that only see a handful of patients with a trach or post-trach in our lifetime. And you've been faculty. So you know that when we teach these classes, we teach these classes through our own lived experiences, right? And in the world of pediatric feeding disorder, because it's so new, we have Ð so many of our dysphagia classes don't actually Ð they're taught by professors with adult experience. Not necessarily with PEDs experience. Or maybe they have adult research but they don't have PEDs Ð they didn't treat. Which Ð we need this because that propels our evidence-based approaches forward. At the same time, having that lived clinical experience is also incredibly invaluable. If we didn't have exposure to this in academics, or we didn't have exposure to this in clinicals, where can clinicians go to learn more about the differences unique just for PEDs? 

[00:25:18] KK: Yeah. There's quite a few resources. One is ASHA has a practice portal. And they actually have a segment in the practice portal on tracheostomies. And it gives a lot of resources, a lot of the research and some basic information. And that can be a good place to start to kind of get some of the foundational knowledge down. The practice portal, if anyone hasn't looked at it, I mean, it has really nice topic areas. And they brought in Ð ASHA brought in clinical experts to develop those practice portals. It's not just something they kind of threw together. It's very peer-reviewed and it has a lot of input from people who are practicing and have experience in the areas. That's one place I would point people to to get some basic information on tracheostomy. There are a number of sites that do offer education in kind of the medical realm. I will share Ð I mean because I am with Passy-Muir. 

We have a number of free courses with education related to people with tracheostomy and working with them. And it covers a host of topics. From dysphagia to Ð we cover some pediatrics, some adult, on the ventilator, off the ventilator. We offer a host of courses that are free both live. And we have self-studies where people can do them on their own time. But the live courses are Monday through Friday. There's quite a bit of education out there. But that doesn't get you ready to actually see the patient. That gets you some foundational knowledge and kind of gets you started with what you need to know. The number one thing I would recommend is that you find a mentor. Depending on where you're working and what setting you're in. Even if they're not in your setting, get in touch with someone. Even if they don't even live in your state. Get in touch with someone that you can have as a resource. And run questions by them. You can touch base with them on particular patients or cases that you have if you've got questions. But you really need that support of someone who practices in the area and/or has practiced and has that knowledge to be able to support what you're thinking of doing or what you are doing with the patients. 

[00:27:31] MD: Yes. I got to be honest, the Passy-Muir Valve courses. I'm preaching. Do you see me holding a pen? Folks, you can't see me. I got so excited I grabbed a pen and I'm like talking with the pen. I actually assigned Passy-Muir Valve courses within my PFD, PEDs dysphagia class. Because I know I'm not the subject matter expert on this. Because God knows what. But I do know that when I needed materials and I needed personal growth, that's where I went. And they're free. Folks, if you're in a position where like, say, you're teaching, what I did was I assigned the courses and I let them Ð I like to choose your own adventure style. So I said pick a course that aligns with your professional goals. If you want to work in the schools, or if you want to work in early intervention, or if you want to work inpatient, or NICU. And then pick a course and then talk to me about how this course Ð two things you learned and how it's going to shape your clinical practice. Or where you're going to go to learn next, right? 

And it was very exciting to me to have the students come back. And they're like, "Wow. This really helped me better understand what I'm seeing in their clinics." But they might have been afraid to ask the question. And how often do you see something and you're like, "Oh, I want to know more. But I'm afraid to admit that I don't know to even formulate the question." Folks, they're there. Let them guide you. Yes. Okay. We've talked about Ð 

[00:29:01] KK: Let me add Ð 

[00:29:02] MD: Go ahead. 

[00:29:02] KK: Can I add one thing on that just real quick? Because our pediatric courses are not as readily available because I'm the only one who teaches most of them. We have one RT who has pediatric experience and teaches [inaudible 00:29:15] application. But we do offer those. However, if you really need pediatric, email us at education@passymuir.com and we will schedule those for people. Because we do have courses really specific to pediatric. But they're limited. But I will say, in our self-studies, Catherine Shaker did a course for us. And so, we've got one on infants with Catherine Shaker that's a really, really good pediatric course. 

[00:29:43] MD: Nice. Nice. Awesome. Okay. So then, can you talk to us about what is the role of the one-way speaking valve? And I know Ð because I assumed incorrectly because of my limited exposure and experience when I was in grad school that all one-way speaking valves were Passy-Muirs. And then I learned on the other side that they're not. That there are other ones. But Passy-Muir your has such a robust literature behind it to support it. And in my head, I equate that with there's a lot of bottles on the market. However, there's so much robust literature about Dr. Brown's bottles and their nipples, their flow rates, their shapes and the one-way pressure valving. But can we talk about what is the role of that? Speech? And then in swallowing? 

[00:30:34] KK: Yeah. I'm going to answer that kind of in a maybe three-part, two-part. I'm not sure if it's going to be a two-part or three-part. 

[00:30:42] MD: You take all the time you need. 

[00:30:45] KK: Well, I first just want to address the valve itself. Because you mentioned the function and the one-way valves. And you're right. I mean, I've heard that from a lot of people where they just kind of assumed all speaking valves or Passy-Muir, it was kind of a synonymous term. And they're not. There's different valves on the market. And all valves are one-way valves. I will say that piece. Because one way, all that is meaning is you breathe in through it. You do not exhale through it. It's one way. You breathe in when the valve is on and you breathe out through your mouth and nose. That's the one-way portion of it. Where the difference comes in is how the valve functions. And that's a pretty significant difference. The Passy-Muir valve is a no-leak, biased closed valve. It's the only one Ð of all the speaking valves it's the only one that's bias closed and no leak. 

And what that means is the valve is always closed. If you pick it up and just look at, it it's closed. The diaphragm in it is in a closed position. It only opens during inspiration. When it's on a patient, they have to breathe in. They breathe in. That opens the valve. And that allows their support from the ventilator or room air, whatever they're breathing. They breathe that in through the valve. As soon as inspiration stops, it automatically closes. And 100% of their exhalation is up and out through the mouth and nose. Because when it closes, it actually traps a column of air in the tracheostomy tube. So that secretions, and air and things cannot actually go back into the tracheostomy tube. It puts buffer there and it redirects, like I said, 100% out the mouth and nose. That's the no leak, bias closed. 

And you're right, there are over 300 peer-reviewed publications on the Passy-Muir valve alone. The actual valve. And how it works and what it does from swallowing and speech, et cetera, standpoint. And those are independent of the company. We don't do research. Those are outside researchers who've done those. The difference though that I want to share Ð so that's the Passy-Muir valve. It's the no leap, bias closed. All other valves are bias open. And bias open means the patient breathes in through the valve. And on exhalation, their exhalation is split and they have to exhale into the trait tube to the valve to close it. And then part of their exhalation goes out the mouth the nose. So it's kind of a split resource. Some of the air goes into the trach tube and some goes out their mouth and nose. 

That's the difference in the valves is that way it works as far as when it closes. Because ours closes at the end of inspiration. The other closes at or during exhalation. And exhalation is actually closing it. There's effort by the patient toward not Ð they don't know they're making that effort. But there's effort to close the valve. Now switching back to that bias close, no leak. The advantage of that and what the research has shown is that by having 100% of our exhilatory effort go out the mouth and nose, we restore cough and throat clear. We're restoring sensation. We're restoring voicing if they have voicing. And this is with the thought that there's no injury to the vocal folds. All other things being okay. They are now getting that flow through the vocal folds. They get voicing. If it's an infant Ð because we often get asked like, "Why does a baby need this? They don't talk." 

[00:34:39] MD: [inaudible 00:34:39]. 

[00:34:42] KK: Yes. And you're looking at the cry, the cooing, the babbling. Depending on the age. As they get a little older. But all those little sounds that infants make, it helps with parent-child bonding or caregiver-child bonding because the parent can Ð or the caregiver can hear the cry. They start to learn the cries. Because all cries are not the same. So they start to learn you know if it's a pain cry, or a hunger cry, or I just want to be held cry. they start to get that information. Using a valve restores the flow on the speech side of things to restore that communication. And there's quite a number of studies by Freeman-Sanderson et al published from like 2016 to '21 or '22. She's done a lot of work looking at the psychological effect of not having a voice, of being voiceless, when you have a tracheostomy. And the findings are what we'd kind of expect in that patients have more anger, more fear, more anxiety, more Ð just a number of stressors when they don't have their voice. And when their voice is restored, they have an improved quality of life, improved participation in therapies. Just overall improved function. From a speech standpoint, not only does the person Ð no matter the age, are they able to communicate. But we're also impacting psychological well-being, and quality of life, and even social interaction. And there's a whole host of things there. 

On the swallowing side, by restoring Ð when we place the valve and we restore that flow to the upper airway, what we're actually restoring is pressure. Remember, I mentioned the hole and the loss of all those pressures. When we have the valve on, we now have pressure returned. Subglottic pressure is restored. The pressurized system and the respiratory system is restored. Pressures for swallowing through the pharynx and the esophagus, all of those pressure-driven aspects of how we function have been restored. Because now we can engage the vocal folds and engage the upper airway. And now you can have graded exhalation. You can have Valsalva. You can actually close the vocal folds for pressure like for bowel movements and bladder like to be able to Ð if you have to bear down for anything. That's something a lot of people forget. But with an open trach tube, patients can't bear down and they can't push if they're needing to go to the bathroom or do something. Yeah. Go ahead. 

[00:37:27] MD: And add in that a lot of our pediatric patients could have a potential comorbidity of hypotonia or low tone. If you have low tone, then you're already at an increased risk for difficulty contracting to have a bowel movement. And then do you have a feeding tube? And it is well-documented that some of our formulas through the feeding tubes are sugar-based that actually increase the risk factors for constipation. If you have low tone, a G-tube or on a sugar-first formula with constipation and a tracheostomy tube without a one-way valve. I mean Ð 

[00:38:06] KK: Yeah. Well, all the listeners, think about it right now. If you really have even just a slight amount Ð quite the discussion we're getting ready to have. But just a slight amount of constipation, you can't Ð when you bear down Ð if you think about how you bear down, we bring our vocal folds together to build that pressure to help with that whole push and to get our whole systems working. With an open trach tube, you don't have the ability to do that. You can't push bear down. 

[00:38:36] MD: I'm sorry. I'm dying laughing because Erin has a video. She's standing outside the door. Erin is our co-host and like one of my dearest, dearest friends. She's like honorary aunt to the boys. And she was over at the house one time. And my youngest will sing to his poos. And so, you can hear him in the house. There is poo in my butt. And he sings just like Erin sings. And so, she was outside. She's got this great video of him recording, "Now it's my poop voice." But he has a different voice that he uses when he's in the act of defecation. And so, Erin, if you're listening, this is Instagram-worthy video right here. 

[00:39:18] KK: Well, and I will share. There's a patient we share the story of. And he would call his valves Ð he actually called Ð this is an adult patient. But he actually called his valve his poop valve. Because whatever, they allowed him to have it. And he'd put it on. He'd go to like the physical therapy. And the first thing that would end up happening within a few minutes is he had to go to the bathroom. And he's like, "So I always knew if I hadn't been or if I needed to go. Like if I put my valve on, it was going to get me going." And so, he'd ask for his poop valve. [inaudible 00:39:52]. I mean, that's an area we don't think of often. But in general, the point, getting back to your question, the valve restores those pressures. And the pressures help our systems from top to bottom. Pun intended. Sorry. From top to bottom. But it does. It just helps restore those pressures to help with the overall functions. And it helps from a swallowing standpoint because it's restoring the pressures that are really needed for swallowing. You now have that airflow for a cough and a throat clear, better airway protection. So it just really helps. Restores to a more normal overall closed system. 

[00:40:38] MD: Yes. Yes. Okay. This is something that has come up for me previously, is I have had to coach caregivers into, if you've had a trach for a long time, you can't just throw a Passy-Muir mirror valve on the end and expect them to be able to endure wearing it for a full day. And we've had to build up to it. And that explanation for like the endurance piece can be a difficult conversation. Can you walk us through why you have to build at that? And then maybe [inaudible 00:41:19] that conversation. 

[00:41:21] KK: Yeah. And I'll tell you an analogy that I use for that often. Because I think it's kind of funny. We all think that just put the valve on and people can wear it and go all day long. However, when we put the valve on, I just was talking about all the things we've restored. That's a lot of work. You put the valve on. They're now engaging muscles they have not been engaging. They have pressure they didn't have before. They're using their upper airway that they weren't using before. And I'm going to, again, kind of two sides. One, research has shown that within four hours of the start of bed rest, we start to have the cellular level degeneration. When we think about a patient with a tracheostomy, they are not using any of that upper airway. So you're going to have some Ð it's like bed rest. I mean, you're going to have that cellular degeneration. You're going to have some disuse atrophy setting in. And that all has to be rehabilitated. They have to get used to using those muscles again.

Sometimes Ð and when I say rehab, sometimes it even takes rehab. We have to do interventions in therapy to restore and improve the function of those muscles. We might do something like respiratory muscle training and use devices to help restore and improve some of that function. That's one side of it. The analogy that I use to help the other piece to share is think about if you're a runner. Because a lot of people [inaudible 00:42:50]. I'm not a runner. But for people who run, say you run several miles a day. You like to run three to five miles a day and you get the flu. And you're in bed for a week. You're not going to get up at the end of that flu and on the first day back out be able to run at the same level that you ran at before you have the flu. You have to build up again. It might not be significant. It might just take a couple of days if you only have the flu for a week. But think if you'd been sick for a month or you've been sick for two months. The longer that time goes, the longer it takes to rehab and get back to the level you were at before you got sick. 

For running or for any kind of exercise, using the upper airway, restoring function by placing the valve, and using all those muscles again, it's the exact same thing. They have to rehab that. They have to work on it. And it takes time. And some patients will go all day long to start with. And they can do really well. They may not have as much deterioration or as much disuse atrophy. And other patients might only be able to wear it for three or four minutes at a time. And they've got to build up that endurance. Like I said, it's like having the flu or something and trying to get back to running. You have to rehab those muscles. It's not just Ð place the valve. Because you're now bringing all those things back into function. It's not just airflow. Everything's changing a little bit. 

[00:44:27] MD: And then in the world of PEDs, we can tease it down to the extra layer of are you doing habilitation or rehabilitation? And folks, if you haven't heard those terms, that's okay. Don't feel bad. Because a lot of folks aren't exposed to it. So Rehabilitation is recovering loss of a skill. Habilitation is you didn't have the skills to begin with and you're growing it. For a lot of our infants and toddlers that had a birth trauma resulted in HIE or if we had a perinatal CVA or something of that nature, they're habilitating. Our children that are coming to us with genetic conditions. This is essentially habilitation because we're learning this skill as we're aging. That without intervention, we wouldn't be able to obtain it or we would be less likely to obtain it within the time frame, right? All of those are variables. Now can you walk us through? Do you have like some cases for PEDs that like just stick out like it made an impact here? Or could you kind of like just describe what it could look like in a PEDs case for feeding? Because like I have a couple. But Ð 

[00:45:42] KK: I didn't think about case studies before. I do want to share one thing before we do the case studies. Because you mentioned pediatrics in the habilitate versus rehabilitate. And that's actually something I cover when I teach about PEDs and especially younger infants and toddlers, preemie, NICU. I talk about that habilitation. Because, A, a lot of times we don't think of it that way. And we've got to remember that's a function they never had. So we've got to help develop that function versus they're restoring a function. That's one piece. But the other piece is I want to make sure, as we talk about infants and as we go into a case study, is to think about the inner relationship between functions when we're looking at infants. And what I mean by that is if they have an open tracheostomy, this can impact the ability to roll over, their ability to start picking up their head. So we're talking about little infants as they get gross motor development. Their ability to lift their head. Their ability to roll over. Their ability to sit up. 

Well, as they develop those functions, those gross motor type functions, the fine motor is kind of coming along with it. And in order to work on feeding and self-feeding, they have to be able to get their hands free. Well, their hands start to come free in the normal development path when they start sitting upright and start getting some balance and they don't need their hands for pushing and they're able to sit up in a high chair, et cetera. Well, if you've got an infant with a trach tube and you have delays in those gross motor developments, then you can have a domino effect of delays with some of those feeding skills because they're not getting their hands freed up. And I'm talking about the natural development process. And so, we have to think about when those should occur and how we work on those functions. Because the natural normal trajectory isn't there if they have that open tracheostomy tube. And that can really impact and potentially cause some delay as we start addressing some of those pediatric feeding question marks. If they're not eating yet. Or if they're moving towards, say, solid foods. And they can't eat and drink on a ventilator. They can eat and drink when they have a tracheostomy. But if it's an open system and they're not using a valve yet, the whole issues with balance, et cetera, can be a part of it. 

I do have one case study I'll share. And I've used this in some of the classes I teach. But it's a young infant. She was born in the NICU. Her mother was a 13-year-old. Unfortunately, drug-addicted. Very young mother. She abandoned the baby after it was born. She was born 10 weeks early. She was on a ventilator. She had a tracheostomy. Was on a ventilator. And I'm going to kind of skip ahead because she had a lot of complications and various things going on because of the drugs and because of being born early and et cetera. But it was about the five-month mark Ð I'm going to jump ahead till she was five months. Corrected age. They were working with her. This is about the time that we were able to get a valve on her. And we've got video of her where when, without the valve and like on the ventilator trying to sit up, she was very wobbly and very Ð just everyone was having to kind of support her and keep their hands on her side, et cetera. And when we put the valve in line, she was actually able to support herself and have some trunk control and postural stability. 

And so, we were able to work with her a little bit more on sitting upright. And then she actually started working towards some PO. She had not had PO up until that time. But there's a cute clip where she had been eating. She had been getting some PO for a while. And this was at about the six-month mark. She came off the ventilator. We were using the valve with her and they were transitioning her over to more like some applesauce and things with some flavor. Not just the formula and rice cereal they had been using. And we got the funniest video that, as soon as she got that applesauce, her whole face is like, "Waa." Screwed up. And her eyes are squinched and her mouth is crooked because it had Ð she could taste the flavor of the applesauce. And with the open system, she didn't have taste. That's another thing that can be affected, is taste and smell. 

[00:50:14] MD: Wait. People, the reason why taste and smell is impacted there is because you have autoreceptors in your Ð autoreceptors in your nasopharynx. It's not just the surface of your tongue. It's actually those receptor sites that are kind of back there around your adenoids. Once the airflow is up and over, those molecules pass over, those sites absorb it and it goes up through your central pattern generators, to your gustatory cortex in your brain. It's not just your tongue. But it's also those molecular sites, the mechanical autoreceptors in your nasopharynx. Sorry. I geek out on that. I think that's amazing. 

[00:50:50] KK: Oh, no. I'm so glad you did. And you did such a better job explaining that than I was going to. So I'm really glad you jumped in with that. And that's a piece that, when we're talking about swallowing and feeding, that we don't think of often, is that sense of taste and smell. And with a tracheostomy, it's reduced. And in some people, completely absent. When you enclose that system and get a valve on and restore that airflow through the upper airway, we restore that sense of taste and smell. And if we think about like how we are with a cold, if we can't taste and smell things, we tend to have decreased appetite and then that can potentially affect nutrition. 

In this particular little one, as we're working with her with the valve on, and she was off the ventilator when she transitioned. All this happened at a similar time frame. The transition to getting applesauce, her reaction to the flavor was really cute. I mean, it was just something like Ð she's just like her whole face squinched up and she's like, "Waa." And kind of stuck her tongue out. But she liked it. But it was just like, "Whoa. What is this that I'm tasting?" And we were able to then progress her. She progressed relatively normal around that time frame. We were able to move her along. But having that open trach tube delayed when she started her PO. Well, that wasn't the only cause for the delay. But it impacted, like I said, that gross motor ability to sit upright. Ability even to consider addressing some of the things with the pediatric feeding. But you said you had a case study in mind? 

[00:52:27] MD: Yes. I had. Years ago, I worked with a little girl back in South Carolina who had non-accidental trauma is the new term. When I was treating her, they called it shaken baby syndrome. But now we call it non-accidental trauma. And when she was about 15, 18 months old, a family member, the mom, had hired a babysitter that was a distant family member. Violently shook the child. And she ended up having a significant hemorrhagic CVA in her left hemisphere to the point that her right side was Ð when I came in the door, we were right on the cusp of that transition from early intervention to the LEA. I was with them through that transition. So we were like coming up on three. But not quite three. And then I stayed until they were about three and a half. I was in for six, nine months I want to say until we got the school SLP comfortable. But the little one was almost completely paralyzed on the right side. 

But you could see the innervation coming back in. We had a tracheostomy tube open. No Passy-Muir. No nothing when I started. And the little one with the inner Ð because I talked to the OT. I was like, "If she could reach her right hand, she would violently bite on her right hand." But we assumed it was like the innervation was starting to reoccur in her hand. And I don't know. If anybody is listening who's ever had surgery. When that skin starts waking back up in those nerve endings start tingling, man, that can burn like hell. That's what I kind of equated it to. But she had a G-tube when I started. It was essentially 100% G-tube fed. When I came in, I was like, "Why do we still have an open trach? Like there was no talk of even Ð and I couldn't understand. I mean, her O2 stats on room air were perfectly fine. They put her in her gait trainer and she was getting it. I mean, just going around the house with her little supports. 

And eventually, we were able to work with respiratory therapy and start pulling in and building up trials. And as she built up tolerance for her Passy-Muir valve, because she Ð and I say built up tolerance. Her left hand was very Ð she could move it. She would reach up and pull the cap off. And so, we were trying to fight her from pulling the Passy-Muir valve off. But she would holler the second it went on. And then it was like a startle reflex because she was like, "Wait. Who is making all this racket?" And it was her. It was her voice. But we had missed so many windows of cognition. And because of the nature of her injury, she had to relearn kind of what her voice sounded like. And watching her relationship with food. And I'll never forget. Her grandma would come in and make cheesy grits. Oh, my gosh. Sometimes she may or may not have also made me cheesy grits too. Because she really [inaudible 00:55:24] cheesy grits. She used the Ð in Columbia, there's a place Ð I never knew how to say [inaudible 00:55:28]. They have a doula. I don't know. But they have really good grits. 

And so, she would make homemade cheesy grits. And baby girl loved it when it was extra salty, extra peppery. She really enjoyed if there was a Texas Pete Hot Sauce added to it. But as she built up tolerance for the Passy-Muir valve, her hunger cues increased just like you were talking about. Because the airway had restored. Her exposure to taste and flavor. And she was an Umami savory. My mouth is salivating. I now need to go get eggs and make cheesy egg grits for second breakfast because I'm a hobbit. But it was beautiful to see. And we would know when she was done because she would self-regulate and take the cap off, right? Pull the Passy-Muir valve off. And I say that because, folks, if you're listening, this is a complete change to their sensory systems. And we have to remember Ð Erin, correct me if I'm wrong. And I know you're not here. But feel it through the universe. There's eight different sections of our sensory system. And this is going to impact them. 

This is where I pulled in and started collaborating with an occupational therapist on how do we build up endurance. Because it was completely overwhelming when we started. Our PMH was very unique. And with the OT coming in and talking about sensory regulation and filling with a family and myself and the home-based school personnel up. As well as she had her own nurse that came in. Two nurses a day. Nurse and a night nurse. Like we were able to come up with a long-term plan for this little one. And by time I was ready to leave and the school SLP was working with her, I mean, she was 100% like wearing her Passy-Muir valve all the time. They were talking about a full cap on to like get her like decannulated and actually like removing Ð wait. Explain decannulation really quick and then we'll wrap up. What is decannulation? 

[00:57:33] KK: Well, decannulation on the simple side is just getting that tracheostomy tube removed. And in pediatrics, it's a little different process than adults. In pediatrics, most will Ð they first go from using a valve where they breathe in through the trach and out through their mouth and nose to capping. Now this is true in PEDs and adults and in the United States. And the cap is a solid piece. So they breathe 100% of the time in and out their mouth and nose. Where the difference comes in is, in adults, usually they want to see them capped for 24 hours. Depending on the diagnosis and the patient, they might go longer. But at 24 hours, they'll remove the trach tube if they've been able to wear the cap for 24 hours with no removal or intervention. 

In pediatrics, they will sometimes do that. Some will push it out to a week. They want to see them capped for a week. And some physicians will do a sleep study before they'll actually remove the tracheostomy tube. In pediatrics, it's a little bit longer and different process. But the ultimate end goal is just getting that trach tube out. And then that leaves a stoma. You've got that small open hole. And that closes on its own. It's not normally stitched, closed or anything. It doesn't take a surgery or any type of intervention. You just put bandages over it and monitor it for closure. Now down the road food, if it does not close, they might do stitches to close it. But usually, it closes pretty quickly. It starts to scab over within a couple of days. And then after a couple of weeks or so, it starts to really close up. That's a decannulation, is just getting that tube out. 

[00:59:17] MD: I've had one little guy that I worked with a lifetime ago. He actually had to have a skin graft there. But he also had a whole host of other things going on. It didn't surprise the family or anybody. But, oh, man. He was a pistol. He had a Lightning McQueen backyard roller coaster that his dad built him. And it was a little wooden one. And, oh, my gosh. B burned more calories going Ð I mean, he would say, "Up. Down. Go." And it was really cute once he hit that hard G. And I mean, he had been decannulated. But once he hit that hard, like, "Go." Because there's so much pressure that you have to build up to make that 'g' sound. And I just got happy. I miss him. But he's got a little brother now. I mean, they're thriving. Okay. To be respectful of our time, you host a podcast. So can you tell us the name of the podcast and a little bit about it? 

[01:00:11] KK: Yeah. Well, our podcast is Conversations on Aerodigestive Management. The CAM podcast. And we do it to Ð it's free, of course, and it does provide CEUs. It's a 30-minute podcast. But we basically try to cover all topics that are related to the area digestive system. It's not just on trachs. We do have quite a number of podcast on trachs and mechanical ventilation. But we also have things on competencies. And we've covered Ð well, I talked with you about pediatric feeding disorders and caregiver coaching. And those will be coming up very shortly. And I apologize. I don't have the date written down with me. But we've got a host of topics that are just related to that area digestive system. And we do it in seasons. Season one was in 2022. This year, we were in season two. And, yeah. Tune in and listen up. I think you'll find as you look. Because like I said, it's such a wide range. We cover pediatric, adult. We cover just professional considerations working in this field and like what you need for training and competencies and things like that. It's a whole host of topics. 

[01:01:25] MD: Perfect. Okay. And the title? Slowly. One more time. Because you said it too quick I couldn't type it in. 

[01:01:29] KK: Oh, sorry. It's Conversations on Aerodigestive Management, The CAM podcast. And it can be found at passymuir.com/podcast. It's also on Spotify and Google Play. But a quick resource is just to go to passymuir.com/podcast. 

[01:01:49] MD: Perfect. Oh, my gosh. This is amazing. I am going to add this to my repertoire when I am out walking. I've been hooked on Ologies. Have you heard of Ologies? 

[01:01:59] KK: Mm-mm. I do not know that one. 

[01:02:01] MD: Okay. Ologies with Alie Ward. She interviews specialists on all different things. And I got bit by a tick when we moved into the new house. And Ð 

[01:02:12] KK: Oh, no. 

[01:02:14] MD: Yeah. And her episode last week was on tick-borne disease, which is the worst thing to listen to after you've been bit by a tick. But at Halloween, she had one. She interviewed a vampirologist who teaches a class at the Ohio State. He is Ð I don't know why. I have the most popular class on campus. But it's Ph.D. level researchers and like whatever their sub-specialty is. Everything from vampires to tick-borne disease. 

[01:02:44] KK: Oh, that's cool. I'll have to check that one out. 

[01:02:47] MD: Yes. Yes. Okay. Well, Kristin, thank you so much for coming. This was absolutely Ð 

[01:02:51] KK: Oh, thank you for having me. 

[01:02:54] MD: Yes. You, guys, I would recommend, if you're in a position to have them come host, book her. Get her to come out to your state association conference. Get them to come out and do an in-service at your site, at your facility. We will be in touch for getting you out to a certain university where I may or may not be working at in a couple of weeks. And thank you. 

[01:03:15] KK: I will share just to clarify something you just said. We're not going on-site. We will do conferences and universities. We're not going into facilities just yet because the virtual education is working really well. Because we can schedule it at your convenience. And then with COVID, that kind of changed up our standard way of doing things. But still contact us because we still provide the education. And we have occasional on-site education. But it's not as frequent as it used to be. But thank you so much, Michelle. I really enjoyed talking with you. 

[OUTRO]

[01:03:48] MD: Feeding Matters. Guides system-wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. So, what is this alliance? The alliance is an open-access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy, and research. So, who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. To date, 187 professionals, caregivers, and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together. That's a wrap, folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble but, yet, sassy host, Michelle Dawson, The All Things PEDÕs SLP. This podcast is part of a course offered for continuing education through speechtherapypd.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. And as always, remember, feed your mind, feed your soul, be kind, and feed those babies. 

[01:05:27] MD: Hey. This is Michelle Dawson. And I need to update my disclosure statements. My non-financial disclosures, I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP. A past president of the South Carolina Speech-Language and Hearing Association, SCSHA. A current board of trustees member with the Communication Disorders Foundation of Virginia. And I am a current member of ASHA, ASHA SIG 13 SCSHA. The Speech-Language-Hearing Association of Virginia, SHAV. A member of the National Black Speech-Language-Hearing Association, NBSLA. And Dysphagia Research Society, DRS. Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston. And I hope you make it out there. My financial disclosures include receiving compensation for First Bite podcast from speechtherapypd.com as well as from additional webinars and for webinars associated with understanding dysphagia, which is also a podcast with speechtherapypd.com. 

And I currently receive a salary from the University of South Carolina and my work as adjunct professor and student services coordinator. And I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders. As well as compensation for the CEUs associated with it from speechtherapypd.com. Those are my current disclosure statements. Thanks, guys. 

The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely. 

[END]

FBP 239		Transcript

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