2024-03-20 03 Panel 1 What It Takes to Build and Run an Aerodigestive Clinic Different Perspectives

>> With the next panel, I’m so happy to be here and to be presenting this panel because I think after everything we’ve heard from Chris and Kara and the American model, and it’s really a relief to see that we’re trying to customize and make this happen in our different perspectives because I guess we have a lot of people from South America here. Who’s from South America? A lot. Yeah. So, we know that this model, the American model is not an easy one for us to adapt to. We have to make a lot of adaptations and we started doing this back where I work in Brazil a couple of years ago. It’s loading. Okay. Thank you. So the theme here today is we’re going to talk a little bit about what it takes to build and run an aerodigestive clinic. It doesn’t, well it takes loads of people, have you seen? And it takes, and we’re going to hear from our friends here which I will present further on but we have an oemologist, Dr. Sheri Torres-Silver from Cincinnati and Dr. Sari Akra from Nashville, not Nashville, Vanderbilt, yeah. Vanderbilt, Nashville who’s a GI and I have to put in that you have a background in engineering because that really fascinated me in chemical engineering and Karen Goldschmidt who’s a speech language pathologist from Chile, from Santiago and they’re all going to give us our perspectives on how it takes or what it takes to build a team. I’d just like to quickly tell you a little bit about what I was, I asked them to talk to us about and why I asked them to talk to us about because there are things that are very, very intriguing and difficult when we’re trying to run an aerodigestive team in practice. We started this back in Campinas in Brazil a couple of years ago and we had Dr. Paul Bush come first time. I invited him over for this aerodigestive mindsetting mission where we actually got our pneumologist and GI everyone in the same room to hear him speak and tell us about how this model works. From that we went on to building up what we started with a WhatsApp group and a meeting once a month because the difference in our countries from in America is that apart from the fact that we have a public health system that 70% of the people depend on and even in private practice physicians and SLPs and all the professionals we’re not working in the same place the whole time. We’re not in the same hospital all together at the same time. That can make things difficult for us to communicate and to get the patient coordinated properly. One of the big problems too is that we might make up an aerodigestive clinic as we have now running Campinas where we’re all together in the same room discussing the patients but we still don’t have a program that is we’re not recognized by our institutions so we don’t get the funding and the resources that we need. The designated time in the operating theaters or the exams that we need and that makes things difficult and we kind of try to find ways to prioritize and which are the patients that really need this or that exam or this or that evaluation. This is why these are some of the problems that we have specifically a big problem for us is the lack of a dedicated coordinator that we just can’t get people to pay for someone like that. I think that’s the same maybe in Chile and Argentina and other places. So this makes things difficult to make things run smoothly for long periods of time and coordinating and bringing people in together. So that’s why I asked these three fabulous people and they’re going to answer all our questions and give us all the solutions so we can find have a little bit of clarity maybe on how you know how these patients should flow in a service when we’re trying to make this run and we’re not quite there yet. So what I asked them to give us some insight on was about the criteria for patients that should be seen by the aerodidestive team or clinic or the program. Should we be evaluating the patient separately and then bringing them all together? How important it is for them to follow up or for each specialty to follow up on every patient and does the importance of each member of the team vary according to the patient or according to that profile of the patient? So we’re going to give them a couple of minutes or for each of them to tell us how this works in their own programs. Shall we start with Cherie? Yeah? And hopefully we’ll have some time for discussion at the end. I think Dr. Akro, you want to start? I think the order of the… So I’m Cherie Akro from Vanderbilt, the same institution as Chris. It’s my third visit to Chile and I love this country, mostly not only for its physical beauty but really the hospitality and friendship that I’ve seen across the years. So again, I refer to the main article by Paul Besch and the rest of the group as one of the first instruments that we used in the Aerodigestive Society to define what an aerodigestive program might look like. And this is a slide that you might have seen a little earlier from Dr. Wooten but I can say that my colors are slightly better. But basically the aerodigestive team is not only GI, ENT, speech and pulmonary, but it’s all these other main groups that sort of complement the key elements. And our team at Vanderbilt is called the Complex Aerodigestive Evaluation Team or CADET team. It’s composed of a multitude of folks. And so one of the questions was what does the clinic look like? How does the referral work? And really we’ve adopted some of the early work by Paul Besch at Mayo and basically we see patients as long as two of the three main groups are potentially involved. So either ENT in pulmonary or GI at pulmonary, et cetera. And then we have kind of major criteria and minor criteria. And our main thing is that you need to have either two major criteria or one major and two minor. And you can see those illustrated over here. We follow those loosely but they are sort of our general framework for what we do. This is the number of patients that we have seen over the last three years. They’re obviously a smaller program than the Boston model, but it seems to work for us. We see patients across the state of Tennessee and from several surrounding areas and therefore these distances also play into the follow-up model that we have that also includes telemedicine. And so we also do a fair number of triple endoscopies. Basically they’re in the endoscopy unit but on some occasions they’re in the operating room. So 80 last year in the endoscopy unit and 25 in the operating room. And what is the clinic workflow? Basically there’s a pre-visit planning by our clinic coordinator followed on the day of the visit by a pre-clinic huddle where the team members meet. And then usually it’s ENT and pulmonary going together to see a patient and GI and speech and language pathology going together. And then we swap the patients. At the end of the clinic we have a multidisciplinary evaluation and then create the plan. So in the pre-visit planning that is the purview of our program coordinator, she and a group of our nurse practitioners review the referrals and make sure that they’re appropriate, collate the information and then our coordinator calls the families and gets a detailed history and sort of sets the expectations from their side and our side as well. And then for return visits we have sort of an abbreviated process where the aero-digestive coordinator will collate the results of our studies. And on the day of the visit the main specialty services are physically there, ENT, pulmonary, GI along with the key services, the speech language feeding therapists, respiratory therapists and nutrition. Now we have key partners that are not physically present but they join in on a video link to our pre-visit huddle. So general surgery, anesthesia, social work and allergy immunology join in to review all the cases and then general surgery will pop in from the respective clinics if they’re needed on a particular patient. On the day of the clinic visit the new patients are all seen by the physicians as well as the speech and language pathologist and again as I mentioned it’s GI and speech and language going together, ENT and pulmonary. Then we have a quick huddle at the end of the visit. These are for the new patients, they’re all in person. We are pioneering a new model that we’ve used for some new patients that are actually not part of our program but we do something called an e-consult with other centers where we discuss the patients, a particular patient that the other center may have questions on or wants a second opinion without actually seeing the patient. So it’s a virtual contact between us and another center for a quick consult. And then for return patients it’s mostly run by our nurse practitioners but the MDs also participate in that to some degree. What is the role of the gastroenterologist in all this? One is to assess the potential contribution of esophageal and gastric pathology to the airway and lung symptoms. Example is there reflux, is there EOE, et cetera. Then we’re there to assess with the speech and language pathologists the contribution of swallowing and dysphagia to airway and lung symptoms and create a plan to tackle this. The other thing is we assess the overall nutritional status and along with the SLPs figure out safe alternate routes of nutrition whether it’s modified oral feedings or NG, NJ or G-tube feedings. And then we also assess other GI global conditions that might impact the eventual outcome. For example severe constipation that affects gastric function. And the GI investigations, the question was do we do these like before we see the patient? Usually not. They’re usually determined after that first visit where the discussion happens. And then depending on their needs and their prior workup we will include things like an upper endoscopy, pH impedance probe, video swallow study, barium swallow to assess anatomy, gastric anti-suthee, et cetera. And so what happens afterwards? How important is follow up for you and what parameters are important on follow up after team discussion? In our case if the patient still meets the need for an aero digestive care then they would remain in the clinic. If they live far away we use telemedicine as a form of follow up. But we also try to work with the local gastroenterologist if they have one. Some diagnosis we actually try to use the aero digestive program as a home for them. In particular we try to harbor all the patients with esphageal atresia, clefts, those who were formerly mechanically ventilated and have persistent trach dependence and children with ongoing stridor. If they need GI services but actually don’t need further aero digestive care then we refer them to our general GI clinic or back to their GI providers if they have one. The other common refers that we do are to the feeding program that we have to allergy and immunology, sleep medicine and genetics. There are some patients that are followed in the complex care clinic that we have and those the requirement for that is kids who have repeated hospitalizations who may need sort of more day to day management that might help them stay away from being hospitalized. And then one of our wishes is that we create some partnership with a general pediatrician to help with some of the chronic needs of these kids that happen in between the aero digestive visits and that’s something that hopefully we will get in the near future. But I think it’s very important because we feel like part of the follow up care is disjointed somewhat between visits and we believe that this newer part of the model might be helpful in that respect. [applause] >> Just to relax our ears. Our reality, Latin America, may be different from the one of other European or American countries because many of us professionals work in two types of institutions, private and public institutions. And this makes a difference for the access of patients and that could be unequal. Our patients are diverse. We saw that in the presentation in the morning, presentation by Cara Larson and they are so diverse that if we wonder whether multi-discipline is the constant of these patients, I think none of us will say the opposite. We need some professionals and we need others such as pediatricians, surgeons that give us other perspectives for our patients. Why? Because our patients are complex. And unfortunately, I have to say that this has an impact on the cost, public and private cost required by a child with these diseases that are so complex. They usually require multiple interventions, technological support, cutting edge technology, multiple specialists and unfortunately, many of them require frequent hospitalizations. So when we’re asked to speak about that, I said, “What’s going on in TILIO? How do I believe we are doing in TILIO?” I’m sorry for saying the wild west model but I didn’t know what to say. This is just shooting up in the air. Just shoot tests, diagnosis, referrals. But this is not the best way. And I have seen teams and we’re part of that model. The winding road model, this very long road that never ends. We don’t want that either. Since I am speech therapist and I like to play, I invite you to remember your childhood when we are taught some parables. If there is an ENT, pneumologist, surgeon, and each one sees his own part and if he does not share what he’s seeing or touching is when we are going to have a subjective restricted diagnosis and we are doomed. The problems of those models are that we find many difficulties when scheduling visits, everybody requests whatever x-rays from the toe to the hair. But despite being able to have done something more specific, we also have to pay attention to families. As speech therapist, they can give option A, ENT, option B, the surgeon things that probably option C. What about the credibility? What about the management of that patient and family? What about treatment adherence? Because members of the team say different things. Many procedures, procedures that entail morbidity and mortality and the result is inappropriate. So again, take a look at this giraffe. Is it right? Is she great? What happened in Kalbamakena Hospital? Well, we started to hold meetings, sometimes on a weekly basis, on a monthly basis, sometimes quite disorderly, but we held meetings and we started to get together. We started to talk about our patients and I think that for those that are starting with a new team, and Dr. Alvaro Pacheco is here, Dr. Sepulveda, Dr. Leopold, well, we are now able to talk and I think this was the starting point for a better management of our patients. So I just wanted to ask the community, this is, well, I asked 61 professionals at the hospital, how do you define a narrow digestive team and which professionals should be part of it? They have no idea because our team, unlike the United States and teams in Europe, I think this is relatively new. And they answered like this. I read Paul Bursch’s paper and I said, okay, we are not so far and I felt happy. Which professionals should be part of it out of the 61, just 31 answered? But here what made the difference is that Paul Bursch in his paper highlights the role of the coordinator, the nurse coordinator. And in my hospital, Calva McKenna Hospital, wasn’t considered as important at least by those 31 professionals. So we have to do something about it and we need an answer in the future. So if we had organized as a team, if we talk as a team, we will have those results. Better management, better use of resources, professional resources as well as economic resources, better outcomes and better quality of life. We should hear the word quality of life a lot in our next presentations and a better learning, better communication between each other. One example of what we do not want to see, a disaster, and sometimes I’m asked, well, this is what we have. Well, if you do not know, if you have no idea, if you have no knowledge of team management of such a condition, look into it and see who you can refer to. Fifteen-day-old baby, he was in distress and there was no good management of respiratory function, the severe upper airway obstruction. His tongue had sutured the hissens. There was no feeding and we sometimes forget about comfort, the pleasure of eating, how good is eating, drinking a glass of wine with sandwich. Well, and we are removing the social-emotional aspect from that child, which is so important for his development. What do we do with those patients? And as a protocol, all of our patients with a history of suspicion of Pierre Robin, meconognition, or associated syndromes to Robin sequence, all of those patients are checked by the ENT looking for other airway conditions. If there is no severe airway condition that prevents us to do certain things, destruction is what we choose. And you have this girl that could be in that position. This is a girl with Robin sequence. She had no problem in that position. She could manage her breathing, but I was called as a speech therapist because she doesn’t eat orally. She has desaturation while eating and she has a discomfort. We take into consideration our protocol. Bone destruction is done. As speech therapist, we started oral feeding, mixed feeding. She has a nasogastric tube. After three weeks of destruction, we were able to achieve full oral feeding and development. Another patient, more critical situation, he’s got associated malformations in his extremities, aglossia or microglosia. This was a bit more lumbarous. Although he’s got gastrostomy, we never stopped giving oral stimulation until we were able to remove gastrostomy because he’s got a good development. We could close his palate and stimulate speech. This is his mouth. Now how often to do follow-up? As many follow-up visits as necessary, even though we’re doing an isofibroscope with Dr. Pacheco, not so much because of eating disorders because he’s got no more breathing problems or aspiration or penetration problems. And today we are working in order to have a good articulation, joint management. I’m showing this bulb. Many of you are not interested in seeing how he speaks, but that was my standpoint. I wanted to see what’s going on with the bulb. And once I said, “Look, he’s doing well. There is a very good closure. He can go to school. He’s going to have good communication with his peers.” Dr. Pacheco, who’s doing isofibroscope, said, “Look, I want to see further down and see that lateral pulsation.” He’s described as a cardiofacial leaflet, but he’s got an aberrant structure in the posterior wall in a speech therapist. I’m not interested in that. But the surgeon, yes, because if there is a pharyngoplasty, for example, he’s going to know that things as we done quite carefully. This child was complex, has received lots of surgeries, but today he has language despite mycoglossia, despite mandibular destruction, etc. He’s at a normal school. He does not need a integration project. He’s growing, he’s developing, and that is our objective, to be able to have these children in the community just like anybody else. Now this is the paper by Dr. Paul Birch and Joseph, and I said, “Well, set those four points as the most important ones for a team to work.” And I wanted to do a self-assessment, and everybody will say, “Yes, yes, yes, but there is always a but.” Yes, we got together, but as Dr. Rebecca Mounsey said, we still have problems of accreditation in terms of who pays for a team, who reports about the meeting. Is it the speech therapist, ENT surgeon regarding triple endoscopy? We’re more coordinated. This is in the public setting. I don’t know what happens with the private setting. We need a coordinator, and that improved when we request help from a nurse to guide us. This was immediately solved, but at the hospital, we have no nurse, no coordinator specifically appointed for the aerodigestive team, but they do everything. And the last point, we have to be able to publish and give an objective answer, something we have not been able to do. And because you’re right, because you have your own point of view, that doesn’t mean that my point of view is wrong. We have different standpoints, and we have to talk. And I’m so happy that we are not only Latin America speaking about this, that we’re doing this internationally. And I hope to keep going in friendship and knowledge. Thank you. [ Applause ] [ Inaudible ] >> I’m very happy to be here. Thank you for the invitation. I love the country, love the people, love the food. All right. So we’re going to talk today very quickly. It’s a little bit different focus on my presentation, more into discussing a case and going through kind of the processes that we went through and the role of the pulmonary medicine doctor with regards to being part of the multidisciplinary team. I have no disclosures. And essentially we know that in Cincinnati Children’s, we started earlier in the 1980s, and later it moved into more inclusive in terms of multi-services. And in 2010, 2011, that we included the Esophageal Center as part of the multidisciplinary aerodigestive team. Our mission, as we have already discussed in the aerodigestive centers in general, is to provide interdisciplinary care for patients that have complex airway and digestive problems. And this is to be a team approach that includes primarily ENT, pulmonary GI surgery, and many other allied health professionals. So who’s our patient? And that has already been discussed, very similar to what Dr. Akra said. For us, it needs to have two or more services that need attention, that being airway, pulmonary disorders, upper digestive tract, feeding, swallow, voice, and speech. Very commonly we have a large number of patients with syndromes, because of course those are the ones that have multiple system problems. And we have a large population of charge syndrome, as we are a center of referral in Cincinnati Children’s too. So let’s talk a little bit about a case and then go through how the process goes for us. So this is a 13-month-old baby girl that comes to us in 2014 with a diagnosis of charge syndrome, congenital tracheal fistulas of a deal atresia, tracheostomy-dependent. The consultation was for decannulation. That’s the goal of referral. The intake was initially done by the ENT service. Basically the service that does the intake is associated to the primary problem. When it’s airway, it tends to be for the most part ENT. So this patient came in as an ENT lead. And between the history obtaining the intake, there was frequent and prolonged respiratory infections, chronic cough, wheezing that was audible from the distance, as well as a noisy breathing that was exacerbated with agitation and also with sleep, but more like a wrong kind. And triggers had to do with oral secretions, physical activity, agitation. And she did have a response to systemic steroids, but no response to bronchodilators to that, chronic cough, and respiratory symptoms. So initial evaluation. We have a weekly meeting where you can see that picture. This is back before COVID when all of us used to sit down in the same room. We’re talking about 40 plus persons with all of the services represented, and there’s three things that are typically presented. There are the patients that will go to OR that day, and then there’s a short summary of the indications. The physicians that have already seen the patient come in and bring a little history, and then there’s a short presentation of the plan as of that day. The second group of discussions that Wednesday will be the patients that were seen the week before, and then there’s a short discussion of the summary of the findings, the presentation, the history, physical findings, and how we are going to make new decisions at that moment in time to move forward. And then there’s a third group of patient discussions. Those are the ones coming in the following couple of weeks, not on that day. And again, there’s a review of what the plan is. And actually a fourth group of patients. Those are the new patients’ presentations for intake, which are presented with an overall history for the different specialists to make proposals. For example, I think that that patient should have a CT scan. I think that patient should be seen by genetics. And then we have a preliminary plan for that patient. In this patient in particular, after hearing what the intake that was presented, then there was a plan for him to come for a shared pulmonary and GI clinic to undergo imaging with a high-resolution CT, a swallow evaluation with a fiber optic endoscopic evaluation of swallow, because there was very limited PO intake, and a triple scope. Then comes to clinic. So clinics for us are typically shared clinic where you have the specialist will be GI and pulmonary, but you have other health care professionals represented. Typically we have nutrition, we have respiratory therapists, and we have our nurse practitioners or nursing. Each one of the physicians in the bronchoscopy team have typically a nurse that is assigned to them and follows these patients individually. So what are the goals of me seeing that patient before evaluation? So this is the patient coming in for the cannulation. So I want to identify risk factors that might negatively influence the intended outcome, and how do we get there, and also evaluate what will be potential surgical complications. So we are there to diagnose and manage comorbidities that need to be addressed before we can move forward to the cannulation. That includes chronic aspiration, respiratory infections, chronic lung disease, SS for pulmonary function, airway clearance impairment, be that because of restrictive lung disease, patients that have undergo surgery that do not have appropriate chest wall mobility for effective cough, or be that because they have severe malaysia or dynamic abnormalities not contributing to their clearance, as well as other things. We want to make sure this kid doesn’t have an under-recognized pulmonary hypertension that might give us trouble in the OR under general anesthesia, and also evaluate for other obstructive sleep apnea or supraglottic obstructions that might work against us in the moment of looking forward to the cannulation. So in the initial evaluation, I have eyes on the patient. So typically, I pride myself as being the one that brings the big picture into the conversation. I spend a lot of time with these patients in clinic, typically anything from 40 minutes to an hour, where I’m one-to-one in the room talking with mom, reviewing the history, and having eyes on the patient to diagnose things that are clinically obvious. So we want to essentially review the history, all of the intake, one-to-one with mom, and ask for details, you know, multiple pneumonias. So let’s talk about the criteria. What were the symptoms? What was the severity, level of care, how the patient responded? We like to talk about swallow, symptoms of reflux, aspiration, and the history of noisy breathing. That has a lot of different descriptions, and what is noisy breathing for someone might not be for someone else. What is tried for someone might just be wrong eye or pulling off secretions in the oropharyngeal area. And then I have eyes on the patient. As I’m talking to mom, the patient is sitting in the room, and I can actually hear the work of breathing, I mean, see the work of breathing as I hear the noisy breathing and have my own assessment of what that means. As well as many times they are feeding the kid in the room so I can see what he does, if it’s been orally fed or he’s G-tube fed and then has a coughing spell immediately after. I want to see the functionality of the child, level of development, right? We want to see their neuromuscular disorder that will compromise their airway clearance. And of course the physical exam just confirming our visual observations and the history. This patient had the CT scan, and typically when we plan the visit for these patients, many of these patients are from out of town, nationwide or international referrals, so we try to accommodate all of the evaluation within a week of their visit. This is the initial evaluation, of course. That means that typically the imaging studies that are recommended are tried to be done before the clinic date. One of the purposes of this is so I can have the capacity to sit down and show the images and run the CT scan with the parents so they have a visual cue of the severity or the identified comorbidities because they come in to decannulate the patient, and I need to justify why I’m going to recommend against that happening just now. So as you see, this patient obviously have very significant dependent areas, opacities, and early development of bronchiectasis. That strongly suggests that this patient is chronically aspirated. There was a swallow study done that was not actually of good quality only because they were not able to visualize laryngeal structures out of significant supraglottic obstruction, but they did identify significant problems with secretion management with pulling of secretions what suggested decreased sensation, which is not unexpected on a patient with CHARGE syndrome. At the time, they did not recognize staining coming out of the trach when they’re doing the fees. So we go into multiservice evaluation. The flexible bronchoscopy typically happening first on their anesthesia because we want to get there as soon as possible, not to have the patient on their anesthesia for too long so I don’t get all the saliva tricking down into my airways and contaminating my bronchial burette or lavage. In this patient in particular, with CHARGE syndrome, again as expected, multiple levels of Broadway obstruction, significant laryngeal malaysia, also hypopharyngeal collapse, and the sublottic stenosis was actually mild of a grade 2, but there was a diffuse bronchitis with a copious amount of secretions that were thin and frothy, kind of saliva-like. And you don’t see that very obviously on that video, but there was severe tracheal malaysia. We take out the trach tube and try to see how the trachea is moving with the trach out being pulled to the stomach level. And we, of course, with this degree of bronchitis, always look into the pouch to make sure that that pouch is actually blind and we do not have recurrence of a fistula that needs to be addressed. So what did we find? So the subglottic stenosis was mild, but we’re not ready to decanulate, right? This kid has some significant or doing any surgeries, significant esophagitis, which later on turned out to be candida positive, and then there was an impedance probe that was placed at the end of that procedure on the anesthesia, which I deeply appreciate because it’s less disruptive for the patient comfort, and so comes out of the OR already with his impedance probe that did show delayed clearance of reflux material and significant symptom correlation of reflux and coughing, et cetera, which suggests reflux aspiration. Our bronchiography also suggests some degree of reflux aspiration with increased lipid ladder macrophages, significant inflammation, some squamous epithelial cells, and then we grew pseudomonas, which is concerning because of that CT scan and the early signs of bronchiectasis development, and then candida both in the BAL and in our EGD biopsies. So then we get together that next Wednesday when all of this is done. Typically at the end of the procedure in the OR, we all have a mini discussion before coming into the discussion room with the parents to show them our findings, and of course these are all preliminary findings because the biopsies are pending, the impedance probe is pending, and our discussion as a team is pending, and the EGD biopsies are pending. So but we know by then that there’s a significant active ongoing infection. We’re strongly suspecting that this is secondary to ongoing aspiration. There was an esophageal structure that is probably contributing to reflux aspiration and decreased clearance on the esophagus, and then we have operated with multiple level obstructions, all of which tell us that we’re not working into the cannulation as of right now. We need to solve all of these problems. Go talk to the parents, show them the pictures, and then next Wednesday we meet together and discuss all of this and come up with a plan or discuss the plan that we have instituted. So this is April 2014, and then we treat infection. We establish, we try to work into controlling aspiration. Of course, esophageal dilatation happens, and the patient comes back for that in a much follow-up period, and that’s of course determined by GI and the degree of dilatation and how she responds to dilatations. And then we move into doing dye testing. We had a feast that was supposedly good, but that’s the moment in time, and actually our dye testing was grossly abnormal. At that moment then, we recommend sialorea control. The parents were very resistant to do anything that was permanent, so we talk about Botox injections. And then it comes into consideration, but it’s not done, the possibility of starting positive pressure ventilation through the trach tube, especially to control those patients that have nighttime aspiration of reflux material. And all of that will be in consideration longitudinally if some of the other procedures do not take us to where we want to be, which is a better pulmonary health. We institute aggressive airway clearance and anti-inflammatory therapy, all of which are typically procedures we use for patients with chronic aspiration, especially who already have evidence of pulmonary damage. And this is the course. So, that same year, we tried a little bit later, they were doing some P.O. taste. We tried a little bit later to do a swallow study, which was non-diagnostic. We again repeat a dye testing. This is all because the parents are push, push, push into letting them take P.O. And that’s completely understandable, but of course, we all know the lungs and pulmonary is the most important part of your body. Sorry for everybody else. But so we are concentrated into making these lungs better so we can move forward with the goal, the cannulation. So we repeat Botox injections later in 2014, and when things are not really getting better with regards to frequency of infections, then we move into a drool procedure, and we repeat a CT scan about eight months, nine months later. And this is the result. So we have a significant improvement out of all of these things, and now we are in a better position to start thinking about when can we move toward the cannulation. So how do we go about this? So typically, when we recognize that there is an intrinsic pulmonary problem that needs to be resolved before we can move to the surgical procedures or the goal of referral, then the patient comes and becomes pulmonary lead. And then it’s me and my nurse that take the lead into when do we follow up, talking to all of the subspecialists, putting the orders for their digestive schedulers to follow, and we then become the persons like the coordinators. So each group, if this is a primary feeding team, then feeding team does it. If it remains an ENT lead, then they are the ones that take care of making sure that nothing falls through the cracks. And that includes all of the social aspects of care. Where do we have that patient stay when they come over in town and all of the socio-economical issues that these families go through when they need to come to see us every 6 to 12 months and sometimes much more often? For example, this patient that was having esophageal dilatation initially was coming to see us pretty often, every 3 to 4 weeks. So what happens next? So she’s ready for the cannulation, but the parents actually fell in love with this tracheostomy. They didn’t want to get rid of it after almost 10 years of having it. So we then come into the problem of trying to have the parents feel comfortable enough to move toward the cannulation. And then it’s not until 2023 that we do a capping trial that was successful. She was big enough for her to go home capping 24/7. Typically smaller children with a smaller ear, we were not comfortable letting them cap at night. And then we finally move to the cannulation in November 2023. This is a relatively small cycle on a patient that has history of chronic aspiration. But this is a patient that we were following for many years. So we felt very comfortable by that point that respiratory infections were resolved. We have moved her from GJ feeds that we did originally to G2 feeds and reflux was under control. So just recently we had her again and essentially comes back to clinic, right? So that’s kind of like all of the pulmonary role. So it is my role now to make sure that we’re ready for tracheostecutaneous fistula closure. And I go through all of the list. How are you breathing? How are you sleeping? Because the fistula is open, right? The trach tube is out. Infections. How are you moving secretions? Are the secretions only coming out through the trach tube? Are you expectorating through the mouth? Is she moving air through the stoma? That happens when she’s asleep. Is it only when she coughs? And then we talk about swallow and aspiration. Sometimes if you have a patient that is actually moving forward relatively quickly with their skills orally, we might not move into the cannulation that quickly only because that is my view into what’s happening their way. I can diet test whatever I’m advancing her and I can see what’s happening. Once the trach is out, I lose that window. But that was not her case because her swallow skills were pretty poor. So anyway, about two weeks ago, we closed her trachocutaneous fistula and now the question is, when do we let her go from the airway digestive team? Where I’m not ready yet. I’m usually not the one ready. ENT is a little bit more detached. And I’m talking about Dr. Rutter on that. So we are going to follow her up typically after cutaneous fistula. They come back for an evaluation one month later. Typically about six months later, especially where they have other high risk for airway clearance with her malaysia. And then we decide, does she has to follow up only with pulmonary and what will be the long term follow up. And we typically do continue to see these patients once a year when their process of their persist is still growing. Just to follow up, make sure that the A-frame deformity does not become obstructive and there’s no new problems that arrived. So summary. We already talked about all of the things. Of course, I’m going to vogue into how important it is to have pulmonary in the airway digestive team. And I feel very responsible to make sure that all of the conditions are met. So if the patient needs surgery, it’s not going to fail. It’s not going to get infected. So if the patient is going to get the trach out, it’s not going to then not be able to clear their secretions or manage their infections. Or that there’s other obstructive supraglottic lesions that need to be addressed. Collaboration and effective communication. That’s key. We’re constantly texting each other, emailing, sending medical records. I mean, we are constantly in communication for medical decision making. It’s almost never that we make unilateral decisions. And that includes the surgeons and everybody. And I’m very blessed to work in a center and institution that surgeons and pulmonary and the other healthcare providers can look at each other’s eye to eye. It’s a very comfortable collaboration. And that’s all for me. Thank you very much. Thank you very much. I think we have some time for discussion. If we have any questions from the audience, we’re happy to take questions for any of our panelists. I’d like to — from what everyone talked about, I get the impression — and you can tell me if I’m right or not — that patients come in and are seen by the team. And sometimes the patients will have an impression who is the main caregiver, the main team, if it’s the airway surgeon because the child has a stenosis. And sometimes, no, because he’s not feeding, so maybe it’s the SLP. And after a team discussion, we might find otherwise. And then the coordinator for that child is some other team. And that team will take charge of the child for a period of time and then come back and forth to the airway team, to the aerodigestive team. Is that right? For you guys? I believe the answer is they don’t have just one problem. They have many problems at once. So, for example, a craniofacial patient, that patient belongs to a craniofacial clinic, but we have also to see them as an aerodigestive clinic. So it’s not only about aerodigestive clinic, it’s about also communication between the other team members from other clinics. And so they come and go, come and go, come and go. And that’s the importance of discussion. In our team, most of the time, I guess one in the room takes the lead to give the answer to the parents, just one person, but it’s chosen just randomly and in there. So it’s not that the child belongs to me because I’m the speech-lung therapist or to the pulmonologist or to the surgeon. It’s a patient from the team. But most of the time, we choose one person of the team to give the communication directly to the parents while we are all sitting in the same room. Dr. Sari, do you have, do you want to comment on that? On our end, we do collaborate with other programs depending on the needs of the patient. But once in the aerodigestive program, it’s almost always like a team approach. So there’s not any one person necessarily owning them. What we do is after our evaluation, the triple endoscopy, we always bring the patient back shortly after we get all the results so that actually all four services meet with the patient together and each gives their own perspective on what’s going on with the patient rather than having a single spokesperson because often, you know, these patients, as we noted, are coming in with multiple issues as part of the criteria for being in the aerodigestive clinic. So for us, it’s essential that they meet all of us. And how often do you discharge patients, Sherry? I find it very difficult once they’re in the aerodigestive discussion and team to discharge these children because I don’t know about you in the United States or in Chile. It’s very difficult while communication isn’t easy where patients live and for their, you know, owner, local attention and to understand everything we’re discussing if people are going to understand and they’re going to be able to take care of the child without them coming in and checking in with us from time to time. So it’s not often that we discharge patients. So for example, once a patient comes into the aerodigestive team, even though there’s a lead team that is running what will be probably the primary ongoing problem, the other members of the team remain involved as long as there’s an active problem happening. For example, there might be a kid that comes in for first evaluation, GI gets involved for EGD, initial evaluation, then to recognize that there’s not an active, you know, gastrointestinal problem. Therefore, GI essentially backs off from the following evaluations and then pulmonary and ENT for airway stay together. When we have a patient that is ready to be discharged from the center, that does not necessarily mean that the patient is discharged from our care. Like I have patients that, for example, are decanulated but were former preemie that has chronic lung disease and significant asthma and other problems, the patient continues to come and see me. And I continue to be the window to recognize if there’s new problems that actually request a reintegration in the aerodigestive team later on that has been rare, but situations where that’s the case, that we reinstitute them because suddenly they start developing significant problems with gastrointestinal and then you meet criteria again to come back to aerodigestive. In terms of having a lead team, I personally feel I’ve been working in Cincinnati Children’s. I’ve been with them 14 years and have seen in first person the health processes have changed and how we have become more and more and more busy. I think that especially in a very big center where you have the number of patients are too many to necessarily list, I think that having a team that becomes the lead responsible for communication, for ordering, for following up and making sure that everything is coordinated is imperative. Because even though I’m not the one that is going to answer the GI problems, I need to understand what’s happening so we can have that conversation with mom. That is not to say that the gastroenterologist, the ENT, the surgeon are not available to have these conversations for decision making. If there’s a double stage LTP that needs to happen, Dr. Rutter will have that conversation. I’m not going to explain the surgery. Even though I’m the primary for that moment, I’m the lead, then when it becomes more of a single surgical problem because the pulmonary part is resolved, then it moves into a pulmonary lead. And I honestly feel like that works much better in terms of addressing the problems and making sure that the adequate follow up happens. It’s quite obvious that you need really good coordination. And you’re all talking about a nurse coordinator. How do you train a professional to be that coordinator? Is that someone that comes in the team and is listening to all these conversations that gets trained specifically for this in the states or someone that has been through all the different clinics and has grouped up all that knowledge and can do this appropriately? So my experience in pulmonary has been that some of — we call them the aero nurses, right? Each one of us physicians has a nurse that is assigned to us and they know our patients. They know the ongoing issues and the ongoing plans. And then, for example, we have one of our nurses that worked with us several years that then became the bronchoscopy airway tracheostomy ventilator nurse coordinator. So it’s my experience and hands on that this particular person then move into a more leadership managerial position. I cannot necessarily say in detail what happens with the other services, but I have seen, for example, in GI, a nurse that was with them for some time and then rolls into the leadership role. So not necessarily always the case, but I think that they are exposed to the system, exposed to the processes then to become part of the decision making. Okay. I think we have some questions. Do you want to come — do we have another mic? [ Inaudible ] >> So I think that every patient is their own leader, you know, world and decision making. We are definitely not opposed to — if the patient in capacity to de-canulate has to do with tracheomalacia and everything else is, you know, the T’s are crossed, then that will be a surgical consideration. In this patient in particular, by the time that we were ready to de-canulate from the pulmonary aspiration point of view, the tracheomalacia was significantly better. One of the things we do to test that, you downsize the trach tube and see if the stenting of the trach tube is not contributing to airway clearance or ventilation. And then you decide, do I need to move into the surgical arena to actually achieve de-canulation? So this patient in particular, even though at the moment I meet her in 2014, the tracheomalacia was significant enough to be contributing to the problems. It was aspiration the number one problem. And so surgical management of that was not in consideration at the beginning. Always there, but not in consideration. Thank you. >> Hi there. Melissa Brooks-Peterson from Colorado. Thank you for the bilingual presentation. That was awesome. Question for each of you for your respective institutions. Do you have access to dedicated or interested or caring anesthesiologists or anesthesiologists? Or what is your current status for anesthesiology at your institutions for your multidisciplinary program? >> I’m a speech language therapist. But I know we are a big center, children’s hospital. So we have a pool of an anesthesiologists. And all of them are children anesthesiologists. And I know maybe Alvaro or Varela or the surgeons actually should respond this. But they have their own anesthesiologists. And they have good communication with them when they’re doing the scoping. So most of the time they have the favorite one. >> We have actually as part of our pre-visit huddle, a representative of the anesthesia team usually is on that visit. So that as we plan for triple endoscopy, they’re actually aware of what the challenges are. And then among the large pool of pediatric anesthesiologists, there’s a smaller group that handles our patients because they have specific needs as Melissa will be discussing further today. >> So for Cincinnati Children’s, we have — we are blessed to have a very large number of anesthesiologists that are exposed and commonly work with us in the OR in the aero digestive cases. As part — of course, it’s a very complicated system. So it’s difficult to explain in 15 minutes. But as part of the initial evaluation, an anesthesia consultation always happens. And then they decide if there’s any particular considerations for anesthesia, be that, you know, how they’re going to be inducing the patient, whether they want a patient — they recommend observation post-op, whether we need to have cardiac anesthesiologists in the case, or they are requesting other evaluations, you know, because they’re concerned about underlying cardiac disease or clearance by cardiology. So do we have a designated cardiology that only works with aero digestive? I will say no. But definitely there’s a filtering for those more complicated cases or cases that might be expected to have some potential in, you know, in OR complications. And you typically see the more experienced anesthesiologists. And that is typically leave to the surgeons and the anesthesia team to decide who’s the appropriate person for the case, because that is actually looked for before the patient comes into the OR. >> That’s the same for us. We don’t have a dedicated anesthesiologist. We have a couple of favorite anesthesiologists. But the most important thing is to get them talking and to speak to them before you put the child in the room. And that’s what we always do. We go through the case with them beforehand to make sure you can actually do the exam. There’s no good putting a child on the table and then deciding what the plan is when everyone is already in the room and the child’s under anesthesia. Can we have — we have — our time’s up. So really quick. >> Gracias. My name is Andrea Soler. I’m a pediatrician working in the doctorate in Colombia. Thank you for the challenge. I’m a doctor and I’m invited to be here in Colombia in my country. Dr. Acheri, how do you do it? >> [speaking in Spanish] >> [speaking in Spanish] >> [speaking in Spanish] >> So — I’m going to have to answer in English so everybody understands me, if that’s okay. So the sleep study, if I — in the first evaluation, if I have a patient, especially that’s when I was talking about neuromuscular disease, restrictive lung disease, significant chest deformities, if I recognize any physical conditions or history that suggests that this patient might have unrecognized alveolar hypoventilation and you’re trying to decide if you’re going to decanulate the patient, the first question to answer is do I actually can decanulate? Do I even need positive pressure ventilation on this child before moving forward? So then the sleep study will be indicated typically is part of our — after, you know, after first evaluation recommendations. If that proves to be negative, then we do use sleep studies as part of our decanulation process, especially in patients that have chronic lung disease or some other conditions that might compromise neuromuscular disease. And for example, those that have multiple levels that seem to be good enough to decanulate but maybe not good enough and every patient will surprise you with having an obstructive index of 16 when he looks not too bad in the OR or walking around, you know, capped. So definitely sleep studies are readily available in my institution, even though they’re extremely expensive and we rely on them for decision making, especially in patients with recognized risk factors before we decide to take the cannula out. >> Okay. Thank you. We’re going to wrap this up and we’re going to speak more specifically of all these problems later on throughout the day and we’ll move on to our next panel. Thank you. [APPLAUSE] [APPLAUSE] (audience