Children’s Mercy Kansas City’s Infant Tracheostomy and Home Ventilator Program provides infants and children who require long-term ventilation, individualized care in the home setting.
Children’s Mercy’s program is one of the largest in the U.S., with more than 25 new patients treated each year.
While at home, patients and their families are given the opportunity to have a sense of normalcy and thrive in an environment outside the hospital critical care units while still receiving complex medical care with access to on-call physician 24/7 and multidisciplinary care team and the support of local private duty nurse in the home.
The program has seen excellent results both in survival rate and short-term neurodevelopmental outcome since its creation in 2005.
Most infants are successfully weaned off the ventilator by the time they are 2 ½ to 3 years of age and the tracheostomy tube removed after several months.
Winston Manimtim, MD is here to discuss Children’s Mercy Kansas City’s Infant Tracheostomy and Home Ventilator Program.
Home Ventilator Program: Treating Infants and Children in the Comfort of Home
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Learn more about Winston Manimtim, MD
Winston Manimtim, MD
Winston Manimtim, MD is neonatologist at Children’s Mercy and Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. Dr. Manimtim received his medical degree from the University of Santo Tomas Faculty of Medicine and Surgery and completed his residency at Albert Einstein College of Medicine-Montefiore Medical Center. Dr. Manimtim completed his fellowship in Neonatal/Perinatal Medicine at University of Maryland School of Medicine and is certified both in General Pediatrics and Neonatal-Perinatal Medicine.Learn more about Winston Manimtim, MD
Transcription:
Home Ventilator Program: Treating Infants and Children in the Comfort of Home
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “Home Ventilator Program: Treating Infants and Children in the Comfort of Home.” My guest is Dr. Winston Manimtim. He is the Associate Professor of Pediatrics at the University of Missouri Kansas City School of Medicine. Dr. Manimtim, welcome to the show.
Dr. Winston Manimtim (Guest): Thank you. Good afternoon.
Dr. Smith: Let’s start with how often is ventilation actually needed in the NICU setting?
Dr. Manimtim: It really depends on the type of the neonatal intensive care unit. The typical neonatal intensive care unit has the majority of infants being admitted for extreme prematurity and, therefore, those infants are being ventilated for extreme prematurity of their lungs. In a regional referral NICU, just like ours here at Children’s Mercy in Kansas City, the majority of our infants are actually the later gestation, meaning closer to term with, obviously, a much different set of respiratory pathology, some cardiac malformation and other anatomic abnormalities, some gastrointestinal, and those kind of things. Being a referral center we see lots more complicated infants who, at that point, still need to be on a ventilator.
Dr. Smith: You’re seeing, ultimately, what ends up being some long-term ventilation issues and that’s the whole point of your program is trying to establish a more home setting where the child can get the appropriate care in a long-term ventilation setting.
Dr. Manimtim: That is exactly correct.
Dr. Smith: In most cases, what is the primary cause of a newborn requiring ventilator support?
Dr. Manimtim: In our program, we see that the majority of our infants are still those who are born very prematurely, who eventually required prolonged mechanical ventilation and could not be weaned off of the ventilator. That’s why they go on to continue to require ventilation, up to the point that we can get them home. Some of our infants also come with malformations, either of the airway or the facial malformation – those kinds of issues--that require their airway to be bypassed. Those are another group of patients. We do have a big number also of babies who are born with congenital heart defects who may be in different stages of their heart defect repairs that may continue to require ventilatory support. Those are another group of patients that we follow. Then, there are a few who have central nervous issues who, for whatever reason, are not able to breathe independently on their own and so, eventually, will require home ventilation as well.
Dr. Smith: Are there some guidelines – I’m sure there are--some established guidelines that determines which newborn can go home on ventilation? I know that’s ultimately what your program is gearing to do but are there some guidelines that you follow that helps you to decide if a newborn needs to stay in the hospital on ventilation or go home on ventilation?
Dr. Manimtim: Right. We do have specific practiced guidelines that help us decide exactly what you said – if the baby is a candidate for prolonged mechanical ventilation at home. There are other programs in the country that are doing the same thing. We probably are almost in the same type of situation when we decide, at some point, that it is time for this baby to be prepared to go home on a ventilator instead of keeping the baby in the hospital indefinitely.
Dr. Smith: In the children that are allowed to go home on ventilation, are these children that are close to being weaned off ventilation? What’s the length of time, usually, that a child is on ventilator support that are allowed to go home?
Dr. Manimtim: It depends primarily on the primary indication for why they needed a mechanical ventilation in the first place. For our large number of patients who are former extremely premature infants and who became ventilator dependent, we see them and are able to send them home. Within the next six to twelve months after they go home, we are able to successfully wean them off the ventilator. Although at that point in time, they’re not ready to come off with their tracheostomy, which is the breathing tube that is connected to their ventilator. But, on the average, by the time they are about between three and four years of age, they are completely off the ventilator and off the tracheostomy. Other children, who’s indication is different, like for example, if the indication for continuing mechanical ventilation is neurologic, those are the kind of patients that may need ventilatory support for a much longer a period of time.
Dr. Smith: I have some information here. It says “Children’s Mercy’s program is one of the largest in the U.S. with more than 25 new patients treated each year.” I assume that’s in the home setting ventilation program.
Dr. Manimtim: Correct.
Dr. Smith: Have you treated enough children at home on ventilation equipment to be able to talk about outcomes at this point – positive outcomes or negative outcomes? Is there any data on that at this point?
Dr. Manimtim: We do have an ongoing data collection for all of our patients that we’ve taken care of here in our program. We started the program some time in 2005 or 2006. So, we’ve been doing this for almost ten years now. For those infants, at least for their short-term developmental outcome, meaning their developmental milestones at the time that they are about between two and three years of age, we are actually seeing most of them are able to catch up in their milestone. Especially if the primary indication for their mechanical ventilation was due to prematurity alone and not due to any other complications or any other medical conditions that are present at birth.
Dr. Smith: When you send a child home on ventilator support, tell us how that works. Who’s following them and how do they follow up? Are there physicians on call for them? Is there a nurse that goes out or a respiratory therapist that goes out and helps? How does that process work?
Dr. Manimtim: I’m glad that you asked that question because, in our program, even prior to tracheostomy, meaning putting in the tube for purposes of long-term mechanical ventilation, we meet with the family and, as I said, our ventilator team is composed of our psychosocial team, our nutritionist, our respiratory therapists, nurses and everybody else who are involved in the care of that patient. We meet with the parents and lay out the plan in anticipation that once we can meet on having that particular patient having the tracheostomy, then these are the expectations including what the expectations of the family should be. When we get to the point that the baby is already stable clinically, meaning there’s not a lot of changes in terms of what the baby needs in terms of ventilatory support, then we meet again with the parents. At that point, we talk with the provider of the durable medical equipment or the DME companies as well as the provider of private duty nursing because, at the point that they would be going home, we have to make sure that they have a supplier and the supplies that they will need as well as they will have the support of the private duty nurse there that will coming to the home and help take care of those babies. In our program also, we have neonatologists who are on call 24/7 to take calls from all of those parents or caregivers at home if there is any question or if there is any problem at any particular point in time. So, we are following them very, very closely. We do see them very regularly in our home vent clinic, sometimes as often as one to two weeks after discharge, to make sure the transition of care from being in the hospital goes smoothly when they go home. We also have a respiratory therapist, again, provided by the DME companies, who would be checking the ventilators if there is some question about malfunction and things like that. With the coordination of all of their care and providing basically the primary care for all of these infants, we were able to, as much as possible, keep them at home and not be readmitted to the hospital. If, at some point, they get sick and we try our best to troubleshoot, whenever they are having problems at home, then we may need to send them to our emergency room and communicate with our emergency room physician that such patent is coming and needed to be reevaluated. We keep in touch with them so that we can provide them all the information that they needed to have to make that assessment for that particular patient. If that patient needed to be readmitted in the hospital because they are really getting sicker, then they get readmitted to the pediatric intensive care unit. Then, we as our home vent team, also provide co-management while they are in the hospital. We also go over, again, with the parents and the caregivers at the time that they are being discharged so that they can transition from being in the hospital to the home and it goes smoothly.
Dr. Smith: I’ve got to tell you, it’s just an amazing comprehensive program that I know is doing so much for so many kids and families. Dr. Manimtim, I just want to thank you for the work that you’re doing and thank you for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.
Home Ventilator Program: Treating Infants and Children in the Comfort of Home
Dr. Michael Smith (Host): Welcome to Transformational Pediatrics. I’m Dr. Michael Smith and our topic is “Home Ventilator Program: Treating Infants and Children in the Comfort of Home.” My guest is Dr. Winston Manimtim. He is the Associate Professor of Pediatrics at the University of Missouri Kansas City School of Medicine. Dr. Manimtim, welcome to the show.
Dr. Winston Manimtim (Guest): Thank you. Good afternoon.
Dr. Smith: Let’s start with how often is ventilation actually needed in the NICU setting?
Dr. Manimtim: It really depends on the type of the neonatal intensive care unit. The typical neonatal intensive care unit has the majority of infants being admitted for extreme prematurity and, therefore, those infants are being ventilated for extreme prematurity of their lungs. In a regional referral NICU, just like ours here at Children’s Mercy in Kansas City, the majority of our infants are actually the later gestation, meaning closer to term with, obviously, a much different set of respiratory pathology, some cardiac malformation and other anatomic abnormalities, some gastrointestinal, and those kind of things. Being a referral center we see lots more complicated infants who, at that point, still need to be on a ventilator.
Dr. Smith: You’re seeing, ultimately, what ends up being some long-term ventilation issues and that’s the whole point of your program is trying to establish a more home setting where the child can get the appropriate care in a long-term ventilation setting.
Dr. Manimtim: That is exactly correct.
Dr. Smith: In most cases, what is the primary cause of a newborn requiring ventilator support?
Dr. Manimtim: In our program, we see that the majority of our infants are still those who are born very prematurely, who eventually required prolonged mechanical ventilation and could not be weaned off of the ventilator. That’s why they go on to continue to require ventilation, up to the point that we can get them home. Some of our infants also come with malformations, either of the airway or the facial malformation – those kinds of issues--that require their airway to be bypassed. Those are another group of patients. We do have a big number also of babies who are born with congenital heart defects who may be in different stages of their heart defect repairs that may continue to require ventilatory support. Those are another group of patients that we follow. Then, there are a few who have central nervous issues who, for whatever reason, are not able to breathe independently on their own and so, eventually, will require home ventilation as well.
Dr. Smith: Are there some guidelines – I’m sure there are--some established guidelines that determines which newborn can go home on ventilation? I know that’s ultimately what your program is gearing to do but are there some guidelines that you follow that helps you to decide if a newborn needs to stay in the hospital on ventilation or go home on ventilation?
Dr. Manimtim: Right. We do have specific practiced guidelines that help us decide exactly what you said – if the baby is a candidate for prolonged mechanical ventilation at home. There are other programs in the country that are doing the same thing. We probably are almost in the same type of situation when we decide, at some point, that it is time for this baby to be prepared to go home on a ventilator instead of keeping the baby in the hospital indefinitely.
Dr. Smith: In the children that are allowed to go home on ventilation, are these children that are close to being weaned off ventilation? What’s the length of time, usually, that a child is on ventilator support that are allowed to go home?
Dr. Manimtim: It depends primarily on the primary indication for why they needed a mechanical ventilation in the first place. For our large number of patients who are former extremely premature infants and who became ventilator dependent, we see them and are able to send them home. Within the next six to twelve months after they go home, we are able to successfully wean them off the ventilator. Although at that point in time, they’re not ready to come off with their tracheostomy, which is the breathing tube that is connected to their ventilator. But, on the average, by the time they are about between three and four years of age, they are completely off the ventilator and off the tracheostomy. Other children, who’s indication is different, like for example, if the indication for continuing mechanical ventilation is neurologic, those are the kind of patients that may need ventilatory support for a much longer a period of time.
Dr. Smith: I have some information here. It says “Children’s Mercy’s program is one of the largest in the U.S. with more than 25 new patients treated each year.” I assume that’s in the home setting ventilation program.
Dr. Manimtim: Correct.
Dr. Smith: Have you treated enough children at home on ventilation equipment to be able to talk about outcomes at this point – positive outcomes or negative outcomes? Is there any data on that at this point?
Dr. Manimtim: We do have an ongoing data collection for all of our patients that we’ve taken care of here in our program. We started the program some time in 2005 or 2006. So, we’ve been doing this for almost ten years now. For those infants, at least for their short-term developmental outcome, meaning their developmental milestones at the time that they are about between two and three years of age, we are actually seeing most of them are able to catch up in their milestone. Especially if the primary indication for their mechanical ventilation was due to prematurity alone and not due to any other complications or any other medical conditions that are present at birth.
Dr. Smith: When you send a child home on ventilator support, tell us how that works. Who’s following them and how do they follow up? Are there physicians on call for them? Is there a nurse that goes out or a respiratory therapist that goes out and helps? How does that process work?
Dr. Manimtim: I’m glad that you asked that question because, in our program, even prior to tracheostomy, meaning putting in the tube for purposes of long-term mechanical ventilation, we meet with the family and, as I said, our ventilator team is composed of our psychosocial team, our nutritionist, our respiratory therapists, nurses and everybody else who are involved in the care of that patient. We meet with the parents and lay out the plan in anticipation that once we can meet on having that particular patient having the tracheostomy, then these are the expectations including what the expectations of the family should be. When we get to the point that the baby is already stable clinically, meaning there’s not a lot of changes in terms of what the baby needs in terms of ventilatory support, then we meet again with the parents. At that point, we talk with the provider of the durable medical equipment or the DME companies as well as the provider of private duty nursing because, at the point that they would be going home, we have to make sure that they have a supplier and the supplies that they will need as well as they will have the support of the private duty nurse there that will coming to the home and help take care of those babies. In our program also, we have neonatologists who are on call 24/7 to take calls from all of those parents or caregivers at home if there is any question or if there is any problem at any particular point in time. So, we are following them very, very closely. We do see them very regularly in our home vent clinic, sometimes as often as one to two weeks after discharge, to make sure the transition of care from being in the hospital goes smoothly when they go home. We also have a respiratory therapist, again, provided by the DME companies, who would be checking the ventilators if there is some question about malfunction and things like that. With the coordination of all of their care and providing basically the primary care for all of these infants, we were able to, as much as possible, keep them at home and not be readmitted to the hospital. If, at some point, they get sick and we try our best to troubleshoot, whenever they are having problems at home, then we may need to send them to our emergency room and communicate with our emergency room physician that such patent is coming and needed to be reevaluated. We keep in touch with them so that we can provide them all the information that they needed to have to make that assessment for that particular patient. If that patient needed to be readmitted in the hospital because they are really getting sicker, then they get readmitted to the pediatric intensive care unit. Then, we as our home vent team, also provide co-management while they are in the hospital. We also go over, again, with the parents and the caregivers at the time that they are being discharged so that they can transition from being in the hospital to the home and it goes smoothly.
Dr. Smith: I’ve got to tell you, it’s just an amazing comprehensive program that I know is doing so much for so many kids and families. Dr. Manimtim, I just want to thank you for the work that you’re doing and thank you for coming on this show. You’re listening to Transformational Pediatrics with Children’s Mercy Kansas City. For more information you can go to ChildrensMercy.org. That’s ChildrensMercy.org. I’m Dr. Michael Smith. Thanks for listening.