Dr. Tessie October - Tracheostomy Decision: Supporting Family's Values

Paul in his short life taught us so much about communication and loving decision making and I think our topic today is so fitting based on his legacy. We're also incredibly grateful to Paul's family who partners with the sports have Boston 98.5 who's your caddy fundraiser golf tournament and they've just been truly generous over the many years to support this educational program. I am truly excited today to introduce you to our speaker Dr. Tessie October. Tessie I'll just say in short is a superstar and someone whose career I have been following for many years. She's an associate professor of pediatrics at Children's National Health Systems in Washington DC. She completed medical school at the University of Washington School of Medicine. She did her pediatric residency at Children's National, critical care fellowship at New York Presbyterian Hospital at Columbia University. She holds a Master's of Public Health from Columbia. She is board certified in pediatrics, pediatric critical care and hospice and palliative medicine. She started her training with our PCEP program many years ago and also has become a expert sort of faculty member, director of courses with Vital Talk which is a nationally recognized curriculum for excellence in communication for the seriously ill. So Tessie takes all this talent and blends them together through her research advocacy and training. She's an NIH funded investigator who studies family physician communication during serious illness and childhood. So in addition to all that, she is the loving, dedicated, hard working mother of three young children ages 8, 6 and 4 and simply a terrific individual. So please join me in welcoming Dr. Tessie October. Thank you, Joanne, for that wonderful introduction. I am so excited to be here to share some of my science with you. I am a communication researcher so the idea of talking at you doesn't really work so I do feel totally comfortable if folks will have questions and they want to speak up in the middle in terms of doing that versus waiting until the end. And thank you all for inviting me. I will advance the slides in one way. And thank you to the continued family for your generosity. This lecture is in his honor and I hope I do him justice. My research career has no conflicts unfortunately. My research has really focused on having the patient and family be at the center of our care that we deliver in the ICU. And so although it's broad and I think about communication and decision making in the ICU but also seriously ill children, today I'm going to focus on one particular decision that is dear to my heart mainly because a lot of our families grapple with making this really tough decision about whether or not to place trick y'all for me and their child while the child is critically ill. And so today I'm going to describe some of the recent benefits that we as physicians discuss with families around trick y'all for me decision making. You spend a little bit of time talking about some of the regret and conflict that families have around this decision. And then we'll end by talking about understanding the impact of this decision on their quality of life, both for those who opt for the trick y'all for me and those who opt against it. And then we'll spend a little bit of time talking about some strategies that we've developed to help support these families. So anyone who is care for any of these children recognize how incredibly challenged this decision is for families. Families tell us over and over again the decision to place the trick y'all for their child is one of the most stressful decisions that they consider for their seriously ill child to the ICU. And I want to note that although it is one of the decisions that's heightened on their list, it is rare in our ICUs. In our NICUs, about 2% in our pediatric ICU, somewhere between 6 to 7% of patients are considered for trick y'all for me. So for anyone who is in an ICU who've had this discussion, what do families think about it? When you bring up the idea of trick y'all for me, what do they say? What do they say? Some mind to cross. A line to cross, right? I have been doing this for almost 20 years and I have never encountered a family member who was like, this is the life we wanted for our child. This is the decision that we want to make. Instead, what they say is this is not the life we imagine. There has to be a better way. When we try that excavation, just one more time, and in it is that there's inherently built into it, there's conflict with the team because we are offering or suggesting or recommending a procedure that they generally are pushing back on. And so I became interested in knowing that there's conflict in heritins decision, how do we actually discuss it with families? And so I was privileged to have a data set. So one of my bigger projects is looking at decision making in the ICU, among all decisions, critical decision. And we took our steps, so we are audiosafing family conferences around decision making. And we decided to take a subset of those decisions, only the decisions where they were discussed in tracheosomy were the ones that we pulled out of that data set and did a deeper dive. And what we found in that deeper dive is that we've done a qualitative approach. Our goal was to generate a conceptual model that describes how physicians balance giving information in terms of their risks and benefits. So these data are from 2012, 2014. We had 21 eligible conferences of which 19 families are presented. And I'm going to show you the results of these. So among these 19 families, these are the general demographics of what these patients look like. And these are reflective of what our patient population looks like in Washington, ZC. The high percentage of African-American families. And then we looked at what the diagnostic categories were. Primarily, the indication for tracheosomy was respiratory disease. We also had a significant portion who the physician team was considering tracheosomy for them because of neurologic disease, our hemorrhagic patients, and lastly those with shocking trauma. One of the things that I do want to highlight is that these are among the sickest children we care for. So in RICU and in your ICU here, the mortality rate is between 1 to 2%. Among these children, our mortality rate is about 25%. And so these are the sickest children in our unit, the ones who require the most resources, and the ones who tend to have the team have more moral distress around care and from them, especially around some of these really hard decisions. These children also stay in our ICU significantly longer compared to our general population where our length of stay is around two days. These children are in our ICU for 50 and 60 days. If you want to see who was present during these family conference, it's really interdisciplinary to be enrolled in the study and have to have at least an ICU position. So that's the only reason we're probably 100% in those conferences. But we also have a pretty large group of other consultants who are equally important in navigating this decision making process with our families, including our bedside providers, our nurses, our social workers, chaplains, and so on. So the first question we ask is, what are the benefits that we actually describe to families around this decision? And we found from these 19 transcripts, there were 300 statements that we can actually classify either as a list or as a benefit. All those more than 3.4 of them were described as benefits and the rest were described as risks. So 217 of the 300 statements we described as benefits. And when we look at how we describe the benefits, they go into three particular areas of large areas. The first was that, you know what, this trick, you ask me, can actually limit your time in the ICU. So it could actually limit the impact. And we say it to families to say, you can get out of the ICU faster, quicker to rehab. You can have a more stable airway, so you don't have to worry about us taking the two out and putting it back in, or that you can reduce the needs of situation for your child. These were by far the most common comments that were made that were when you would describe and benefit to the families. The two other categories of benefits that were less common, what's still present, were that, you know, if you get the tricky ass mail, benefit your child because they can overcome outcome. They'll be able to speak again. They'll have a normal life. I mean, we really said they really can do what anybody else can do. They just freeze from a different point. We also tell them that it can normalize or optimize their respiratory health, right? That they can have improved airway clearance or reduced ventilator needs. When we looked at the benefits that were 217, there were 83 statements that were described as risks or burdens. And those felt we felt it's two categories. Either that boy, this is a really big commitment. There's going to be extensive medical support that you're going to need. Your child may have some functional limitations. Your child may not be able to speak again. And your child may not be able to eat and they may need long term ventilator dependence. We also mentioned the complications that exist immediately around the procedure, such as the airway risk or that this is an invasive procedure. And there are those risks that inherit to that. And when we sort of take a deeper look at the granularity of what we're saying, that we really categorize it as either the tracheosomy is the next step. It might be something to consider or it's an opportunity to gain some better health. And when we summarize it, it's that we overemphasize the benefits by and reduce the risk when we're describing them. So we're not giving equal weight to the heavy decision. Also, we found that we can describe some of the things that we describe as benefits, can also be described as risks. And most commonly, we tend to talk about the benefits that are mutually beneficial to both us and the families. And those are the things that limit ICU impact. It's really hard for a family to disagree or for a physician to disagree that we both want less time for you being the ICU. We both want you to have a stable airways. You don't have the risk of us putting it back in and out, especially during an emergency. And we all want your child to not be on set in this for long term. And so we tend to stay in a place that's safe. We talk about the benefits that benefit us, that benefit the family, but also ones that we have agreement on. And we are shining away from the ones that have conflict. We're shining away from the ones that can be described as a risk and benefit. Where there's more ambiguity. Where we're talking about whether or not your child may be able to speak, whether or not your child may be the ventilator for long term, what this impact is going to be like on your family. And so this led us to say, this is what we're doing in our ICU. We're spending more time talking about the benefits that only focusing on the benefits that are easier for us to talk about. What is it that families want to know? Isn't it that these other benefits or risks that we're spending less time talking about our things that they want to know? We should probably figure that out. So we then embarked on a study where we decided to look prospectively at families and ask them about what factors they consider when they're thinking about a tricky out. And for this study, we enrolled families from all of our ICU's because that's where the majority of tricky out-to-means decision making happens in our inpatient setting. There are patients who come to the clinic who have a go straight to the operating room, but that was such a small portion that we didn't include those patients. So we enrolled in our neonatal ICU, our pediatric ICU, and our cardiac ICU for families who were facing this decision. And we followed them at three time points. The first was at the time that they were making decision. And this was important for us to make sure that the team had talked to them about it before we brought it up. So we only enrolled them after they had a documented family conference where they were talking about tricky out-to-means decision making. At that point, we asked them about what conflict they have around making that decision. We then interviewed those families that two weeks after the decision was made. And we chose that time period because that's usually when families have already been consented for the trick if they opted for it. And the tricky out-to-me happened and they were at the bedside and sort of starting to get involved in the care of their child. At that point, we asked them about decision over grit and we also asked them about quality of life. We really focused on the parent's quality of life if they opted for or against the tricky out-to-meat for their child. We then followed them again at three months because in our institution, at three months, most of our patients are formed if they opted for the tricky out-to-me. And if they opted against it, they are also not no longer in our ideal. We asked them again at that point about decision over grit and quality of life. We also did a qualitative interview with them to ask them not only using these serving materials, but tell us a little bit more about your decision making process, about what you're thinking, and what would have been most helpful for you at the time that you will make the decision. We screened 67 parents of which we did not enroll our English non-English speaking parents for this particular study because a couple of our measures were had not been validated in the non-English speaking population, which they have been now. So we're thinking about that for future studies. Four families were unavailable to contact during multiple attempts. So that left us with 44 families who were eligible of which five decline participation left us with 39. Of the 39 families who enrolled in the study, we had some loss to follow up with patients and we also had some bad. So 11 of those patients died leaving us with 25. We have full complete data for all three time points. I show the demographics to show you that they are all pretty similar to what we've seen from all of our other studies and children's demographics that are in our ICU. The majority of those parents who enrolled in the study were mothers. They mostly had an education that graduated high school at least. We're in their mid-30s employed and a 50-50 division between those who had Medicaid and those who had private insurance. Our demographics are as I put here. Most of our patients were from the pediatric ICU followed by the NICU and then last from the CICU. If you look at disposition, our mortality rate in this population really just mirrors what we've been seeing and a lot of our studies where we're talking about families making these complicated decisions. Somewhere around 28%. The first question we asked, which was an interesting one for me, was whether or not this was the first time someone discussed trick you asked me. Is this the first time that the team had a sit down meeting with you around this position? 50% of those families said that they did and a 50% said they did not. What was shocking to us is how often families described people were coming to them to talk about this. Among those, he said this was not their first time that they had multiple discussions. Majority discussions were two at a time. There were some families who said that it was discussed greater than 10 times. Those were mostly our families who were in the NICU and there was one mom in particular who said she just cast it by saying it was like anybody who came into my childhood asked us if we wanted it. It was like the guy who was cleaning out the trash was like, do you want to try to be decided yet? She was just like, it just became that almost like a living joke between them that this is clearly what the team wants. And so we have to be sort of careful of how much we're trying to sell a procedure to families sometimes when there's definitely some pushback. The other question that was interesting for us is that at this time, this is at time one, this is at at the time that they're making decision. Remember there were 39 families, all those 39, 31 of them opted for the trade. Yet when we asked them, was this something that you really, how do you feel? You feel good about it and was this something that you wanted? Only 45% of those actually said yes, we're fully in, this is the decision that we're making. 37% said that they still didn't want the trade yet, they still opted for it. The first question is that we asked them were decisional conflicts. The decisional conflicts is a scale that is converted to a scoring system of 0 to 100, which 0 is no conflict, 100 is a high conflict. Mid-miles conflicts is somewhere around 25 and then a lot, the scale just goes up. And 89% of families said they had some conflict around the time they were making the decision. Now I don't know if that's bad or good. I mean, I think it's a really witty decision, so I wouldn't be surprised if folks have some conflicts around it. The question is what is it that is the source of their conflict? That's what we're really interested in. And so we did a qualitative interview asking them about the sources of their conflict, and there were 16s that came up. The first being, and this was the most common, was that they felt like they had an interest. If I knew there was any other option, I would have taken it. We chose the tracheostomy as a last resort to save our baby boy. And then there were families who told us that why they were conflicted was that they were trying to maintain hope in a place where they thought hope was being taken away. The doctors would not give me a full spectrum of his possible prognosis. Only the worst case scenario. When asked about the best case, they avoided the question. Not because best case scenarios may not exist, but because even talking about best case scenarios might mean that we, the parents, would ignore the other end of the spectrum. And as a result, any decision I made would not be. They also told us that they felt pressured. And we saw this in our families who said that their team constantly kept bringing up to them about tracheostomy. And this is a quote from one of the families who said the doctors had already made the decision, right? All discussions and answers were designed to convince me to agree with their decision. The other themes that came out and they were not as common was that family still were telling us they felt uninforms. They just felt like they needed some more information. And when we asked what was this information, it was about what life was going to look like. What's the long-term picture and look like? What is it like? Do I get to, can we go to the pool? Are we able to go to school? How is this going to fit into my community? Families also were conflicted about trying to balance putting their child's needs to their own personal needs and weighing their options without judgment. This last quote I'll put up here is that this was apparent in the NICU and she said, you know, I changed my decision between Friday and Monday from trache to no-trache and I felt judged by the new nurse. She treated me like I hadn't thought at all about it, which is clearly not the case. I prayed, paced, and cried about the decision. So it set me into orbit that she thought I could be so careless. And I can guarantee you that that nurse is a caring, loving nurse who did not intend to have this impact on the family. It's just a reminder to us of how careful we need to be with our life rush. So that was all about the conflict. The next question that we asked then were about your grit. Do you have regret about this decision? And how have this decision impacted your fault until we asked those questions at two time points. And what we found with regret was that about 58 percent of families reported some regret at the two-week month. That number rose to 79 percent at the three months mark. And we looked at regret among those who opted for the trache and who opted against the trache. Remember, there were 31 families who opted for and eight families who opted against the trache. Of those who opted against the trache, none of them have regret. And that's not surprising, right? Because those who opted against the trache were either making it in the white decision for their child. It was really hard to have regret around that decision when you actually were participating in that. Or their child got better and they didn't need the trache. So they were pretty happy that that that worked out that way. When we looked at the themes of decision or regret, we found that the most common was that families felt uninformed. And so this was common in that it was a thread that we saw in the families around why they were conflicted about decision. But also why they were having regret was that they still felt like they just didn't have all the information that they needed. Some families also regretted the timing of the decision. Some saying, gosh, I wish we had waited longer to give him one more time to see if he can do it without trade. And somewhere, oh my god, our life is so much better. Now that we have it, I wish that we had actually consented earlier. And then families also were saying this is all among those who opted for the trache that they regret how complicated their medical care was. And that they lacked a lot of support in terms of support out in the community and support in terms of nursing and respiratory therapists who were meant helping to co-manage them. The last thing that we asked them about was their quality of life. And we found this fell into four major themes. The first being that the major impact on the parental quality of life after they made this decision was the sexual social help. Families reported depression, anxiety. They also reported just feeling incredibly helpless. And so there's a lot of, there's a lot of data on post-Ice use syndrome that is impacted here. Now these questions were asked at around three months, which is where, right at the point when you have to decide between acute stress versus PTSD or chronic stress experience. So we get that the data might be a little bit muddled in terms of picking out that diagnosis. The other things that families reported was the financial burden was high, the medical fragility. I mean, it's not the role of the caregiver that's frustrating. It's the fragility of the prognosis. It's that I hold my breath all day long waiting for the next issue, positive or negative. It's completely unsettling. And then we heard from families about how overwhelming the medical care is. And you know, these quotes were so visceral when parents were describing them. I will tell you, so I live in the Washington DC area, so there's Washington DC and then there's Maryland and surrounded by Virginia. We have Montgomery counties, a pretty wealthy county of Maryland, and then PG County is a less wealthy community. And I found about, found out about this underground network essentially of how families navigate the home nursing environment has really just made me so sad. In Washington DC, you're paid about $45 an hours for home nursing. We're at in Maryland, it's $25 an hour. And because Montgomery County is a relatively wealthy county, they can actually supplement it. So they supplement those home nurses to actually meet the DC wages. And so what we find is that there's a huge inequity. Our families who live in PG County are much less likely to have dedicated, consistent, regular, high-quality nursing care, just because of these bleached problems. And then families will tell us, well, we also pay onto the table. So if you want the same home nurse, consistently, you supplement. You give them an additional $10 an hour and you can have consistent care. And so the inequity is even more magnified by those families who live in a county where they don't have it supplemented by the government. And then on top of that, those are families who may not have the resources to then get consistent nursing care. And this is a theme we saw over and over again with some of our families saying that they just felt like they just didn't have all the resources out in the community to support their child. So there's a lot of work to do. And we've been spending some time at children trying to advocate for some of those things in the county. So the things that we've sort of looked at from these two bottoms of work is that this is a really hard decision. It's hard for us to have this discussion. It's equally hard or more difficult, I would say, for families to really grapple with it. And then it's a very emotionally weighted, heavy decisions for families. Families are constantly reporting that they feel uninformed and ultimately they want to do what's in their best interests of their child. And so the next place where we were thinking is how can we support our parents? How can we get them to a place where they aren't having as much conflict around decision, or they're not having regret, or that they're at a place where they feel more empowered, more informed, and actually participate in the decision. And some of the things that we've done, right? Is teaching doctors how to have these types of high stakes conversations around end-of-life care, or around this really heavy decision? And the continued electric series is an example of exactly that, where this workshop was a full day for teaching some core skills. I see James Fultke in the audience, too, who is a leader in the field in Vital Talk, which is another wonderful program that I have actually had the opportunity to be part of, but also spend time trying to make sure that we bring emotion in the room because we know emotions are part of this decision. And that we sit in the emotion and we support families through this emotion. And it's important for us to understand their values and their preferences around this decision so that we can make recommendations that are based on those values. The other thing that I wanted to show you, some of the other things that we're doing at children, the one of the things that's been brought up, and so we applied for a grant where I'm going to just show you. Just realize that our son's health was declining rapidly. As parents, with having a child that got sick so quickly, we weren't a state of shock, that we were even faced with having to make this decision. I was very concerned that my son would lose his voice, his ability to communicate with us, and just him being hooked up to 24-7. I didn't want this to change the dynamics of our life and his quality of life. My biggest fear was that I had no idea what the end result was going to be. My daughter was asleep and I was very concerned that she would not be able to be a part of this decision. It was heartbreaking for us. When it was suggested, it made us realize that we may need permanent breathing support to keep him alive. My son, being nine years old, who was thriving, playing on a football team, active, that this had happened so quickly for him, and we didn't want him to fall into depression as a result of him having to get the tracheostomy. And we were kind of concerned as parents, make sure that we were making the right decision that we had to wear with all to even deal with what it meant for him to have a tracheostomy. The trache was not our only option. We had other non-invasive treatments that had been done for him. There was another option. The option was that she would be excavated in the OR. Far from the alternative to the tracheostomy, using the bi-pop breathing machine, we asked a lot of questions. We consulted the doctors and friends. We had a family member that had in fact had the procedure done. And we looked at social media. We were very fortunate. We were able to take part in a collaborative process with our son, Specialis, with the Panda Care team, as well as his picky doctors. We thoroughly went over the trache procedure, what a home care plan would look like. We were even fortunate enough to have conversations with other families that have gone through the process themselves. Ultimately, we were given the information, the space, and the time that we needed to make the best choice for our son. We just knew whatever decision that we made, it would be our decision alone, and that it would be the right decision because it was our decision that we arrived at. I believe that we made the right decision. It was the best choice for our family. And Han said I think I made the very best decision for our family. Hi, I'm Gail. I'm one of the social workers in the PICU. I hope the information shared was helpful. Please consider the options discussed with you by your PICU team. There is no right or wrong decision. The best decision is the one that is right for your child and your family. On your first home with the tracheostomy, you have this group of parents who are willing to come out and help you along with your home nursing and your other resources that are in the community. 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So today is the first day of Tricky Ospy Awareness Week, and since I get so many questions about Hannah's trick and stuff, I thought I would do a video every day this week just to learn over things to do with tricks. I want to explain what a trick is, this is what today's video is, and you tell you what a trick is, and why she has a trick. And then I'm also going to do a video on suctioning. I'm also going to do a video on her emergency bag that we have to take everywhere with her. I'm going to do a Passie Miraval video, explain to you how Passie Miraval works, and I am going to be doing a Q&A strictly on trick related stuff. So any questions that are asked on it, I thought that was a wonderful topic. I will answer it Q&A, I'm not really sure if I'm going to post the Q&A on Sunday or Monday maybe. Any questions that you ask will be answered in a video. I'm also probably going to talk about the ventilator, what's going to happen now, and how that affects me. Those are two separate videos, the how it affects me and what happens now. I'll get started on Tuesday's video. The real trick is what they want to get you to read a poll in the front of your neck, if you're a windpipe, which is your trick yet, and the procedure is called a trickie auto. So I think some people think it's really a question about what a trickie auto is. So the procedure is a trickie auto. But this is what a trickie auto is. You watch any of my other videos, you will have already seen this. And pretty much they all look like. So there's many different reasons, so why we'll have trickie auto. I know five other kids on the island who all have trickie auto beings, and we all have trickie auto beings for different reasons. I know one has trickie auto because he is paralyzed vocal cords. So you need vocal cords to breathe. So if your vocal cords are paralyzed and their paralyzed shut, you won't be able to breathe anything through that because it's shut. So you can't breathe in or out. Sometimes if it's only partly open, then you can have enough airflow, but it still might not be enough. So if you have paralyzed vocal cords, the chances are that you might have a trick for life if you have one in the beginning, unless if your vocal cords start working, which they don't usually become unparallized after their paralyzed. Another reason that you could have a trick is every time you go in for surgery, they have to put a breathing tube in your throat. And every time you put in the breathing tube in your throat, it ear hits your throat a little bit. And when you take out the breathing tube, there's a chance that your windpipe will have swelled up, and now it's unbreathypable. So this is part of the reason that they thought Hannah needed a trick. But this does happen for other kids, and this is the only reason you have healthy lungs, and now you just can't breathe through. Your windpipe, that's just temporary. Your throat will eventually go back to how it used to be, and you'll be able to breathe, but you will need a temporary trickiosity. Some people that get paralyzed might need a trickiosity, because to be able to breathe, you need to be able to pull your diaphragm. So if you say you're paralyzed from, I don't know, your down, most people can still breathe. If somehow, if your diaphragm is paralyzed, then you won't be able to breathe on your own, and you need a need to breathe. Other reasons are like throat cancers, or any kind of head, or throat trauma. You might need a trickiosity. Not only about the reason that Hannah needed a trick, because she needed a lot of her mentalizations. So we're on many different hands of mentalizations before this. She was on, she was intubated, she was on CPAP, she was on low flow, she was on BIPAP, and she was intubated into BIPAP. And the BIPAP wasn't cutting it anymore, and she couldn't live intubated. That's what it's breathing to, being in your throat. So they had to give her a trick, because that's pretty much the, it was the exact same as a trick, except that it's not in your mouth and it's in your throat. So that means that you can get up and move around, and eat, and be normal with a trick. So that's the reason that Hannah has a trick. Mostly, I was also told that she has partial vocal cord paralysis. They weren't sure if it was, they said it's definitely sluggish. So every time that breathing tube went in and out of her throat, it goes across the vocal cords, which can make your vocal cords get paralyzed. Also, they weren't sure if when you have your PDA ligated, I'm half in their back, they go in from like a vein or something, and they somehow come across the vocal cords. And I don't know how it is, but some kids end up having vocal cord paralysis just from having their PDA ligated. So they weren't sure if that was the reason, or if it was from all the breathing tubes, or what, or clearly not have childrens anymore. So these doctors are saying completely different things than what children are so saying. So I don't really know who was right or not, but right now they think that the only reason she needs a trick is to be ventilated. So now that she's on the ventilator anymore, she doesn't need the trick. So that's good news. Anyway, if I hope I explained why Hannah has a trick good enough, if you have any questions don't hesitate to ask, and yes, see you tomorrow's video. Bye. Also, the word sure is when you have your PDA ligated, ligated, ligated. Several months out. And if you re-sample the parents, now of course this is from the perspective of a surrogate caregiver, and not the end of the day. Hi guys, it's Christy. Welcome back to my channel. Today I thought I'd do an NG tube video, basically, how I insert mine, how I have learned to make the process more smooth, easier, quicker, less painful. I'm basically now able to put my NG tube in just a minute or two. So I just thought I'd share the sort of things that I've learned throughout my time wearing the NG tube, and hopefully it will be useful to anyone who is inserting an NG tube themselves or a movie to any medical staff who want to see tips and tricks on how to make the process more comfortable for patients. So I really hope you enjoy the video and find a useful and we'll just get stuck in. So I have my NG tube. This is just prescribed by the hospital, and it is a chlorophyll fine-bore feeding tube. And I have my syringe, which I'll use after I insert the tube just to check that it's in my stomach rather than my lung. I have my pH strips, which I'll also use to check that it's in my stomach and not my lungs. I have a dual-derm extra thin spots, and I'll use this to secure the NG tube to my face. And just before I put on the dual-derm spot, I'll use an alcohol wipe just to make sure it adheres properly. So the skin then there's no oil underneath it that will make the dressing not stay properly. And then I finally have some optylube, which is a lubricant for the NG tube, which will make it go down easier. And finally I have some tissues, just because NG tube insertion can make your eyes water and your new drums, so that's useful. And I also have a drink here, just to help with the process, you'll see how I use that during the insertion. And then just before I get started, I'm just going to open up everything because once I have the tube in, I'm going to want to adhere it to my skin quickly, rather than leaving it hanging there. So I'll just open up my dual-derm dressing. All the other things that I have already. And then I'll just use my alcohol wipe just to wipe where I'm going to be placing the dressing. And this will just take off any of the oils or say makeup underneath the dressing. And that will just make sure it really sticks to the skin. And then I'll just have a tissue out and ready. In case my nose runs or my eyes water during the process, and I'll have my drinking nearby. So my NG tube comes with a little metal guide, so it's a little metal rod that goes inside the tube and this helps to keep the tube more rigid for insertion. And then once it's inserted, you take out the metal rod and then the tube goes more flexible. So what I do first is I just open up the optic loop, but what we know for stick this in sort of twizzle around with it. Just you want the end just covered with some of the lubricant. So basically I tried different techniques to insert it. And to be honest, it was painful. It would kind of like go off and then it would get stuck like right back in here. And it almost like hit like a narrowing where my nose narrowed. It would like just get stuck and I'd really be like push and push and push and push and there would be a lot of resistance and then if I made it go down, but it would just be really, really sensitive and really kind of sore. And so I'd really done enjoy the process. It actually took me a really long time to get in. And so say I was putting it in before work or whatever. I'd have to like factor in the time that it would take to put it in because it did take so long to put in. So I figured out the best way to put it in the least painful on the quickest way. And this is just from playing with different techniques and practice as well. So it will take practice to get it right. I mean, I think following the techniques that I'm going to talk about will help with the process, but also you just need to factor in that practice will also make it easier as well and you'll learn the three and one makes the less painful. But I'll show you what I do. So basically what I do is I am going to put it in my left nostril. What I do is I just grab this bit and I pull it down really, really tight so that I can fill my teeth with my fingers. So I pull it down. And I think what this does is it takes the sensitive part of your nose and sort of pulls it away from where the tube is going to be going in. But I find just whenever I do it my nose is that sensitive. So I feel it right down. And then the temptation whenever you're putting in the tube is to just go like up. And then sort of as you feel you're getting to the top sort of grind and then try to push it down your throat. But that definitely is where it used to sort of get stuck. I used to face those irresistence. So what I do now is I um literally put it in like this. And I let she aim it as if I'm going to the back of my head right here. I let you just go in at that 90 degree angle. And it works so much better. So I'm going to do both of these now. So I can feel it hitting the back of my throat. So what I'm going to do is I'm going to try to swallow it down. So I take a massive gulp. And what I do is I swallow. And as I feel the liquid going down I just naturally let the tube there. I think it will down with it. We would I would hope that we would also find out my Asian training. Whole face water are improving these outcomes. Have you guys sort of broad it? So see the way that sort of sucked it down. And then I'll do it again. One of the models that I have found is instrument. And then once you've passed that sort of initial phase where it like this stuck right in the back of your throat. And you sort of swallowed it down a bit. You can sort of work comfortably push it down yourself. So my doctor has measured this out for me. I think anyone who's putting an injured tube should have been measured by their doctors. So I'm not going to show you how I measure it. But I basically know that there's little markers on mine and once I get to it is 54 I know that that should be where my nostril is. So I basically just hold it here and then bring it up and round. And I'm not crying because it's painful and just crying because it's like when you sneeze or something. Just make your eyes water. So the importance of them when they weigh the disease. And then what I do is I just hold it where I want to fit the dressing. So now I'm ready to put on my dressing. So it's for families. This is an end. I just, if Russ has been doing it for a fight in time. And I will say that as a field, we tend to pretend that this isn't a skill that's worth. That this is something that you're really good. And then once I have my dressing on I kind of do hold it down because I have the metal rod still in the tube. It will try to sort of pull the tube away from your face. So what I do is I generally check whether the tube is in my stomach rather than my lung at this point. And then once I've verified that it is actually in my stomach I pull the rod out because I don't want to pull the rod out. I realize that it's actually in my lung. And then I have to restart the process a little again. Taking the tube out. I'm trying to cut it back in but this time it doesn't have a rod in it. You could always keep the rod and then if that does happen, put the rod back into the tube and then try to re-insert it. But it's actually just easier while the rod is in. Check it's in your stomach and then once you're certain, then you can take the rod out. But I'm just going to take the rod out now because it keeps trying to pull this off my face when it's a bit awkward. I will then, our pediatric ICU fellows will spend... So my dressing has the stuff on very well because I do have a little bit of makeup on underneath this. I usually put my anti-tube in. I'll put the dressing on before I do my makeup but the time there is a tiny bit of makeup on underneath it so it isn't sticking very well but you kind of get where I'm going. Then once I'm done, I'll use my syringe and try to aspirate some stomach contents and then I'll put it onto my... I paint hit strip on it that turns... I think that's less than 4.5. It's kind of... it's not something that you speak to but it has a pH of... I usually go for like four or less on a house a little color code to show you. I'm just thinking... I think I'm sort of... I've got those colors then. It means that you've aspirated stomach contents that is actually in your stomach so it's all good. It must be clear. The best way to insert it is literally pull down on your... pull it really tough-tought and literally go in right as if you're going towards the back of your head and that will make a go in really, really smooth. And then just whenever it hits the back of your throat, swallow it down. Let your natural swallow reflex pull the tube down and then once it's in slightly, you can then start to feed it down. So usually I'm quicker putting it in but it's just with having to sort of talk through it and stuff it to take a bit longer but I can let you do this in like a minute so it's... I find it a good technique and hopefully it'll help others. Anyway, I hope you find this video useful and informative. Please give me a thumbs up if you did and please subscribe to my channel. Thanks so much for watching and I'll see you next time. Bye! So a frequent concomitant of Trakeosomy is gastrostomy and as surgeons, good morning guys. Welcome to a day in my life with chronic illness. There's a lot for a day out of time. So I filmed this video like three times and each time something comes up and I end up deleting the video. So today I'm going to film a day in my life and just show bits and pieces of my day to kind of give you guys an idea of what it's like to be me. So I didn't film when I first woke up just because I never feel good in the morning. It's like when I first wake up and so I didn't show that but when I first wake up I have to put all of my joints back into place like whatever's out. So both my hips, my ankles, my elbows, then like occasionally ribs or wrists or fingers or toes even like it just it varies but today it was my hips, my left knee, both my ankles and both my elbows and of course the shoulder but that's always that's always out. So that's pretty much what I didn't film and then I got ready for the day but I haven't really done any of my medical things so I will show you guys that. But first we need to feed the puppy. Okay let's get some food. All right Macy's been fed. Now I'm going to take my medications. I did it. Oh good work thanks Mom. I gotta get some of this.