Dreams and Dilemmas Parents and the Practice of Neonatal Care

Transcription

1 58 Minute Version ion done by Barbara Hillinger Outcomes of pregnancy are steadily improving in the era of modern neonatal care. But neonatal medicine also demands difficult decisions from parents and caregivers as they struggle with medical and ethical uncertainty. This film shows the experience of one couple in the neonatal intensive care unit (NICU). Gayle and Tom learn early in pregnancy that the twins she is carrying are in jeopardy. They ask the doctors to fight for the twins' survival. At 24 weeks, the neonatal team recommends delivery. Dreams and Dilemmas Parents and the Practice of Neonatal Care Well, we've got the problem of prematurity, but on top of that, we've got the special problems that the twins, each one has a different problem which unfortunately is on top of being only 25 weeks. But I think we are going to have a pretty hard time of it with both of the twins. Even if we are able to stabilize them, we still have the concerns of the smaller baby, who may have been injured in the process of going through this. I am not sure how quickly we will be able to tell with certainty what is going on there. Just from the standpoint of how their lungs and hearts are working, may be more than we are able to support. I just don't know...

2 Gayle (mother): So there is going to be pretty much activity going on for the first 10 or 15 minutes around both of them. But as soon as we are able to let you know whether we are able to stabilize them right after delivery, we will come and talk with you. OK NICU Staff: Grandmother: [Off Camera]: Grandmother:...We'll bag him. Heart rate's OK. Good job Identical twin boys. Does she have names picked out yet? Thomas and Travis. But I don't know which is which. Are we going to get a weight before we or give surfactant first? A weight won't be accurate. OK, Tom, come in. This one is baby B. This is the one that has some fluid on board. He is moving around. As you can see, he is nice and bright red. He's oxygenating well. We are breathing for him, with the tube that we talked about, but he is very active. His brother is behind you. Tom (father): We are helping both of them breathe. They are both stable. They are pink. Their heart rate is fine. The next step is we are going to give the surfactant material down in the lungs. But so far everything is going really pretty well. Particularly, we were more concerned about the larger guy here... because of the fluid... whether we were going to have to remove fluid in order to stabilize him. You can see he just peed. See that? Now does he have fluid on the brain as well or what...? Well, it is the smaller one that there is a question of fluid on the brain. We won't really be able to tell that until we do an ultrasound and look at him. I examined him, and his head doesn't feel full or anything to Page 2

3 me. I don't see anything by physically examining him, that suggests it, but I can't really tell that much. This one has fluid, but mostly in the skin. But so far, so good. Ready to give the surfactant? Yup. [4:05 Begin Scene 1 for Study Guide] Grandfather: [Off Camera]: Family: Sister: (to grandparents) We didn't have to do as much as I was afraid we were going to have to do to stabilize the two of them. They both came out vigorous and screaming. We did put tubes in both of their airways, which we had planned to do from the outset. Really to make the transition as smooth as possible, we control their breathing right after they are born, including giving them some medicine in their lungs for immature lungs. So that's all been done. Both of them have tolerated it well. The complications that they were talking about before... the water on the brain?... the water on the brain of the smaller one? The only thing I can tell you, from examining him, his head size does not appear to be larger than normal and doesn't feel like there is any fluid pressure by examining him. But there is really a limit of what I can tell by just feeling his head. But you seem pleased? I am very pleased. Oh good! Great! Wonderful! So far so good. (off camera) I told you they'd be good How's Mom doing? Page 3

4 Grandfather: Grandmother: Grandmother: Good. You sure have a bunch of family out there with you to hear the news. Yeah, yeah, we all stick together. One pound, 4 ounces, and two pounds 5 ounces. Good job. Doctor sounds pretty optimistic though. Yeah, yeah. We're not through with the crisis, but he sounds optimistic. TRAVIS Tuesday We've got good family support. I'd say everyone from the family was up yesterday. One doc, Doc Edwards, mentioned the problems with the brain. It is easier hearing it from a doctor, telling your parents. But today, today s the day we find a little bit more... Take it from there. Like I said to Gayle, he is here and we just don't do nothing for him. Radiologist: Knowing what we know about the clinical situation, the baby probably was just not perfusing the brain well enough and suffered a very bad injury to the brain and the brain essentially stopped... stopped growing and in fact probably began to atrophy. The brain just has not developed up to what a 26-week brain should have developed to. It looks pretty awful to me. In terms of degree of involvement, it's both sides. It is really extensive throughout. Page 4

5 The question is going to come up of... is the brain severely damaged enough so that it doesn't... the baby shouldn't... it is an option for limiting the amount of support that we do. Radiologist: Right. I think that maybe it might be a reason to go ahead and do something else. But I think the prognosis is really going to be pretty grim. [7:50 Begin Scene 2 for Study Guide] Priest: It s a real worrisome sign that his brain circumference is below the 10th percentile in the face of growth retardation, when it should be actually up to the 50th percentile or so. So that s in keeping with the observation that this was a disruptive event that took place with his brain a number of weeks prior. This brain basically was stopped in its growth. It's been destroyed and basically fluid is filling up the available space. So it all sort of fits with the theme of severe, pretty long-standing brain destruction. Last night at the bedside, I think it was the father that made the comment that they brought these boys into the world and they were meant to be here, both of them. Well, what they said to me was, that they had been told that the baby's brain damage was probably severe, but that they were their children and they will take care of them. So they didn't specifically say what they thought that meant. You have to know that I would be able to support a decision, if the parents reached it with us, to limit support on this child; and we need to be sure that we reach a consensus as a team as well, if the parents come to that conclusion. I am not planning on directing them to that Do I understand you to say that you will leave the parents free to say well what you are saying is our determination is to cease and desist the support... and let him go. If they were to say that to you, you would agree? I would agree to that. Page 5

6 Priest: But is it not more compassionate, if indeed your prognosis is clear, that... I'm not saying that I would not reach the point of directing them. I want to sort of see where their thought process is right now. Priest: I just think that directing people, recommending with medical expertise, is the necessary information they need to make the decision. And that s what the compassionate thing to do is. [10:05 Begin Scene 3 for Study Guide] I've told you some pretty heavy news and I just need to sort of hear how you've thought about it over the night. I think what we understood is that we would have a severely brain damaged child, with cerebral palsy. Do you have friends, do you know any kids who have handicaps from brain damage? Yeah. What are they like? We know a little girl that has cerebral palsy, and she is I guess there are different stages of it. This girl, she walks, she's a normal... but she does have it and she's been progressing better and better. A lot of people's image of what we are talking about is affected by what their personal experience has been. Kids in school, kids of family members. So if you have any personal family contacts, it is helpful for us to know what your experience has been. My father drives a handicap school bus, children on there, so I see. OK... Well, let me be clear about what I think is going on. We went over it again with Dr. Sargent today, with the films, and reviewed it. We are pretty solid about what we think it shows. It shows that there is really Page 6

7 very, very severe damage on both sides of the brain. And it looks like, just from that, things aren't quite as definite in the ultrasound that the brain really is smooth and hasn't continued to develop normally, so we think he had really very serious injury that is undoubtedly from the stress of pumping blood to his brother rather than circulating his own body. Now, what does that mean in terms of what his potential is long-term? I'm not able to predict the future. The best I can tell you is from my experience in taking care of kids with similar degrees of injury and with similar situations, and from knowledge of what other people have reported about kids with similar sorts of problems. What Travis has is very severe. And the most likely scenario would be that he would not be able to develop to be a self-sufficient child, meaning, being able to take care of himself. The type of damage that Travis has is associated with his intellectual abilities as well, not just to his muscle problems. And so the chances of him learning to communicate, learn skills, grow and develop and be a child who reacts and learns normally is very, very poor... virtually nonexistent, from the amount of injury that is there. That's pretty much the conclusion that Dr. Sargent and I agreed on when we reviewed the film this morning. It's really not fair. With this severe amount of brain injury, some parents feel that this is a life that, for their child, that they would not want -- they don't feel the child would want, if they are not able to have a normal, functioning life. And some parents feel that that outcome is worse than the child dying. Other parents feel very strongly, sometimes for religious reasons, sometimes other reasons, that life is important regardless of the degree of handicap. And different situations lead to different decisions about what's best to do. Travis's injury is severe enough that we would raise the question of whether it is the best thing for him to do all the support for an indefinite time. Page 7

8 Now, having said that, let me just tell you where we are right now. I don't know what will happen if we were, for instance, if we were to take him off the ventilator. If he would pick up and breathe on his own, for instance. Right now we are supporting him with IVs. He is not being fed. And those are all things, even without the brain problems, those are hurdles he will have to get through to make it through this to be ready to go home. So we have a lot of problems that are still ahead of us. We are not going to make any decisions right now. I don't want to and don't expect to. I think what we really need is to talk about is what the possibilities, what possible decisions there are to make. We haven't changed anything about how we are taking care of him, OK? He is still a special baby. Wednesday [16:35 Begin Scene 4 for Study Guide] Now, if he pulls out of being early, his prematurity, what are we, I mean, is he going to be able to breathe on his own, as far as that stuff goes? I guess that's what I am asking... The likely outcome is that he will not be able to learn how to walk. It is very unlikely that he will learn to voluntarily feed himself. I think that he would probably be able to learn to suck and swallow, but that may take a long, long time. I think that the ability for him to learn to talk and communicate is pretty doubtful. I think the chances that he could learn to take care of himself or be other than dependent on someone to administer to him is pretty unlikely. OK. [18:30 Begin Scene 5 for Study Guide] How far can we go, say, if something more happens you know, with not just the brain on Travis, but something, he gets some more Page 8

9 problems, more troubles. How far can we go before we say enough is enough? I think that is a decision we can make at any point. I just don't want to get to a point when you say it is too late. I understand what you are saying. Even doing all the things that we are doing to treat them, I think we've got a lot of problems ahead of us still. I think the biggest question is his kidneys, not his heart or his lungs or other things. Because he is not requiring a whole lot of support on the ventilator; he is not on actually hardly any oxygen. And I think one of the things that we probably should clarify today is, if something like that did happen, if he were to have an arrest, if his heart stopped beating, or if something beyond what we are doing right now were to happen, I would really not recommend that we do CPR and go through a whole code and all of that. If we make that decision, if he were to reach a point when he would need, in order to survive, to go through a code, that is something that I can just put as a clear order in the chart that we will not do that. But that is something I need your understanding that it is something that we wouldn't intervene if he had a problem like that. It doesn't mean that we would change anything else in our approach to caring for him. And I think that's something I absolutely think that it is the right thing. I can't... you mentioned... was there a point that we've gone too far, and that means that, you know, we haven't allowed God, or what's right, to take a hand, and decide that it's not right for him to survive. Take your time, to understand what is going on and to sort out your feelings and get over the initial shock of all you've been through, is a good thing. And I don't think we are at a point where your concern that we ve gone beyond the point where we have done more than we should have. OK? I just want to be sure that I understand that you are OK with me writing an order that if he has an arrest, we won't go through a code. I am OK with that. Yes. Page 9

10 Thursday [23:20 Begin Scene 6 for Study Guide] [Gayle said] Yes, if we could just if they would just tell me... a wheelchair doesn't bother me so much, it's the other stuff. And I said well, what would you... obviously you want him to be home playing baseball, that would be the ultimate thing... but what kind of quality of life, what would you consider to be a quality life? She said, I guess as long as he could say hi to Mom & Dad, eat, and, you know, if he didn't walk, but he had to be in a wheelchair, that would be OK. And I said, well, you know I don't have a crystal ball, but how would you feel if, what if in 20 years he was in a bed. He couldn't speak. He couldn't see. He was being fed by a tube. I said, How would that be? He said, That would absolutely be awful. He said, That's no life for him. That's no life for us. So, and then he said. It's kind of hard, because Gayle is Catholic and I'm not, and she has a much stronger faith than I do. I feel like... she feels like God is going to intervene in some way and give us a sign to go a certain way. But, he says, I just don't feel that way. I just can't believe that I have to make this decision and I can't imagine being able to live with myself if we made the wrong one. Friday [25:05 Begin Scene 7 for Study Guide] This family s struggling with a decision about whether to continue support or not, and I think the real question is... we're not going to try to reach a consensus or decide what's right to do. What I am interested in is hearing from people primarily involved in the care, what do you think you would do, if it were your decision to make, what would you do with this child? All of you have been here. All of you have been on rounds. You know the amount of brain injury, you know the whole scenario: a growth retarded, extremely small baby. Just what I'd like Page 10

11 to hear from each of you is what is your own feeling of what is right to do for him? Nurse Practitioner: I think we are close to missing our window of opportunity almost. He's getting down on the ventilator? I think he's probably going to spite us. Meaning he might survive in spite of stopping the ventilator? Yes. OK. I understand where the parents are at. I think it is hard for parents to give up hope, but I would stop. And I agree with you and with Pam, I'm not sure that stopping, as we have stopped in the past, is necessarily going to mean that he's not going to breathe and not going to struggle for a while. We often don't think about what life is like later on for these kids and the families. We think about now, we don't think about later. We don't think about development, and school and life-long issues. And if he is a 25-week, growth-retarded baby with Swiss cheese for a brain, why should we keep him alive? I think it would be better for him not to survive. I think it would be overwhelming for his parents and it would affect his family for the rest of his life. I think it is in Travis's best interest and his family's in the long run to let him die. That's pretty much what I expected that everyone would reach the same opinion that it was appropriate and in Travis's best interest to stop. The reason why I wanted to ask you this is because I think there is a real chance that the parents will decide not to stop. And so the real question, that I'm not going to ask right now, but I wanted you to answer without me telling you why I was asking, is how you would deal with the situation if the parents say they want us to continue and have him come through and survive? Page 11

12 Saturday morning, Travis developed an infection. He was treated with antibiotics but his condition did not improve. A decision was made not to intervene further. He died in his parents' arms. THOMAS Following the death of Travis, Gayle and Tom focus their attention on his brother. You know... they are in good hands So, we had a good five days with Travis. At least we had that with him. Still need to go down and pick out his stone for him. That's the hard part. It's just so final, but it's got to be done. The longer we put it off, the tougher it is... You never think it happens to you, you know? [29:15 Begin Scene 8 for Study Guide] Radiologist: Radiologist: Yeah, I think we should give the baby the benefit of the doubt, too. But, having said that, I think it's more than... smoother than it should be. Well it's not... this is not good. I think that is pretty definitely predictive that the kid will have sequelae. It is unlikely that the bilateral infarcts in this area will end up without any neuro-developmental sequelae, but it doesn't necessarily predict a 100% really awful outcome, in contrast to the other twin who had the small head and big cystic areas. Right. Page 12

13 [30:10 Begin Scene 9 for Study Guide] Gayle, One of the things we were looking for was whether the fluid, the ventricle in the fluid space, might, with the blood there, start building up. And also whether that area where there was whiteness might turn into the cysts like we saw in Travis. I don't see that, actually, and those bright areas, back there, are not bright anymore. It doesn't mean there's not still a potential problem there Right. But, it certainly is not as bad as it might be, there's not big holes that are forming there in that area that we looked at. So that's good. That's good. That s good. April Neonatologist-2: Cardiologist: Neonatologist-2: He's having a real problem with his respiratory right now: wheezing, pulmonary fluid, rales, and Does he still have metabolic acidosis? Oh, he still has metabolic acidosis, he's had that all along. Primary He's kind of had an unstable afternoon. He's keeping me busy. His oxygen is around 53% right now, which is kind of where it's been for the last 24-hours or so. But earlier this afternoon, he was even higher. Cardiologist: Neonatologist-2: There's a lot of reasons why his heart could be thick and overfunctioning. None of them are very common, and none of them are very easy to prove, as far as I can tell. So really, its a lot of unknowns. Even though there are several findings on the heart, I don't think that is necessarily what is causing him trouble right now. I think that it s more Page 13

14 of a lung problem. He has some fluid in his lungs, some scarring of the lungs because he needed so much support early on. I never thought having children would be this difficult, to be honest with you. I have two perfectly healthy ones there Yes, that's Christa and Patrick. Oh, wow! How old are they? Two, and five. May As weeks become months, a social worker discusses the family's situation with other caregivers. Neonatologist-3: Primary Neonatologist-3: When I talked to Mom, which was about a week ago, was that her feeling was that Dad was burying himself in work, that he was finding reasons not to come up here, that he was kind of resenting her wish to be up here more, and that there was really a strain there, they were really finding that they were coping in really different ways. I think that, first of all, maybe he realizes that there is nothing that we are going to be able to do to change what the outcome is, and it doesn't really help anybody to sit there and keep talking about it when there is really nothing we can do. We are just going to have to take what comes, and in the meantime, let s get on with things. Do you have any idea of what kind of outcome he will have? It's not going to be good. But, depending on how they are, I am not sure how I would put it to them. I'm not I don't know enough about it there is not enough data and time to say for sure what's going to happen, but I think he is clearly going to have some problems. I just don't know what they are going to be. Page 14

15 June [34:35 Begin Scene 10 for Study Guide] Head The nurses were concerned and expressing their concern about when Mom comes in to visit, that she wants to hold him, no matter what. And that sometimes, he's not very stable. And that in any other situation, perhaps this would be a baby where the nurse would make the decision that the baby wasn't stable enough, or wasn't doing well enough at the time to come out and be held. And so, we were talking this morning about, that maybe that is all she has, maybe that is all she has to look forward to is to come in here and holding him. And if that's the way she can cope with it, because that's the only pleasure, or good thing she has going for her in this situation, then maybe we need to go with it, and we need to help her. How's Dad? Does anybody know? I haven't seen him for weeks. I just hear that they are coping differently. That he is working very hard. Well, I'll call her again. [36:00 Begin Scene 11 for Study Guide] Sounds like you re but, tell me if I am putting words in your mouth, that you re feeling like you're just trying to to make ends meet and? Money's not the aspect. I just... coming up here, and with Travis I deal with it differently. She feels the need to be up here five, seven days a week, I don't have a problem with that. Some days, you know it is very emotional. They don't say yes, it looks good. Nobody knows. Travis took a lot out of me. And I told her, when Travis passed away, I told her, a lot of things are going to change. Page 15

16 For two weeks, straight, he was... ugly. The whole entire... I think he just gets so over-tired and every little thing just sets him off and, you know, there is just a point of Have you talked about Travis much? No, not really. I think now we are just so involved with him. Actually... the first week, when they were born, Thomas was, kind of like, on the side-lines in a sense, because we were trying emotionally to get set.. Because Travis was so sick right away... Right, so now... after, it was like, now we've got to get to know this one, and figure out what's going on with him. I think the problem is, things look good, and then you get knocked down. And now with his heart, its an iffy... it's hard to tell if its an obstruction from the muscle being so thick or an obstruction from the valve not... He's just so little... Then it's something, when we ask the doctor, how we are looking for an outcome, he can't tell you, it is too soon. How do you go home and set up a room... how do you do that? You leave here with a lot of ifs. Limbo. Yup. I just look at it at stuff different than she does. When Travis had his problems, Gayle had her decision already made. When the doctors spoke to us, Gayle said OK, she accepted the decision. And I think her family did as well. Which was...? Which was... Travis is time to take him off his supports. I don't he made his own decision but I still re But I am not going to take my son off supports because he's got a problem. I won't do it. If it comes to a point when he makes a decision, that's one thing. Her side of the family, as well as her, make judgments without including me. I'm getting the sense too that, Tom, you feel like Gayle might look to them for support too. I have no problem looking to them for support. But don't take their answer over our discussion of what we decide. It's me and her, it's our Page 16

17 children. This is Gayle, she tells her mother everything. I don't believe in that. What our problems are, is our problems. Our problems don't go to her mother. Our financial problems don't go to her parents. Her father stays out of it. Her mother knows almost everything in our lives. But my parents have also dished out quite a bit of money since this has gone on... Not the point. Your parents do not need to know our financial problems, our life, anything else, and that's the problem I have. She goes and tell her parents everything. I mean, come on, this is our personal life, our personal business. I told her I'd be surprised if this marriage lasts through what we are going through. Because it's just the small stuff I ask to have done. And I guarantee you, after this is done, she'll be right over to her mother's That's exactly the way it runs. He thinks of me, losing Travis, and I've just gone on. That's that. That's not what I hear Tom saying. No, but that's what her and her family are saying. What? What I heard you say is that it's because of Travis' loss, that it is hard to keep on coming. It is. You know, I drive by that cemetery every night of the week. Every night. I stop there quite a bit. This is part of me, part of us. This is like you see something happening to somebody else. She deals with it different. Well, the thing is, to me, family is more important than material things, no matter what. And Tom doesn't always see it that way. In order to have a family, to have material things, you need to be able to work, and when the work is there, I'm going to take the work. I mean, you can't keep everything built up. The only free time I get away from the kids, is usually when I come here. That's it. Page 17

18 Well, then maybe we shouldn't have any more children? But no, you're against me going to see a doctor because I am too young. Well, that's a difficult decision to be making right now, I think. Not in my point! I'll be honest with you, I'm not having any more children. If it ever gets driven to me to have more children, I'll leave. I'm not having more children. This has taken enough out of me. I have two perfectly healthy ones at home He comes home healthy, thank God. I'm not going to go through this again, it's not worth the headache, it's not worth it. Why? Three children's enough. I don't want a big family. When she got pregnant, I wasn't game for it I wasn't happy. I told her I remember that We talked about that when we first met. Well you're too young blah blah. It's my decision. I'm not having any more kids! No. None. Zip. That's it, I'm done. She'd love to have five, six kids. I didn't say that Not after this! Neonatologist-4: I think this is an extraordinarily difficult time. Because you can live with good news, and you can live with bad news, but uncertain news is the most difficult with which to cope. And they are in a period of being uncertain virtually about everything his metabolic status, his cardiac status, his pulmonary status, and it is very, very difficult to sort that out. Maybe, when we do have some answers, we will be able to Things will be easier for them. [44:15 Begin Scene 12 for Study Guide] Grandmother: Primary Grandmother: Is this the worst scenario, or is it not the worst scenario? Do you know what I am saying? Nobody knows You just wish you knew somebody in the same boat, so you could kind of compare, OK, you know...? Page 18

19 Primary Physician: Sometimes it's good to talk to other parents, sometimes it is very helpful. But sometimes it can also be detrimental, because you start to compare babies, and then, you know, one baby gets better quicker than your baby at the same gestational age or size and you start wondering what's wrong with my baby? They are very concerned about his heart condition. And for that reason, we are going to try and push to get an echo done two weeks after the previous echo. Because the family really wants to know if it is getting worse or not. July [45:15 Begin Scene 13 for Study Guide] Head We 're assuming that if he has an arrest we should treat him. And my question is, when is the time for us to talk to the parents? Tom wanted no part in talking about taking Travis off, and Gayle said to us, He doesn't have to take care of him. He will not be the one who is there, day in and day out, taking care of all the other kids and this severely handicapped child as well. I can see that Tom may not be able to withdraw support, but I don't know what he would say He agreed to the Do Not Resuscitate with Travis. He and she agreed to it simultaneously, in the course of the discussion with Bill. And I guess that's what I am suggesting. I m not suggesting that we actively withdraw support at this point in time. [46:05 Begin Scene 14 for Study Guide] Neonatologist-5: It seems to me, in situations like this, the big issue is, how do you feel about the baby? How do you think he is doing? Is he making progress, is he not making progress? He's gaining weight, he always seems to bounce back from everything that has happened to him. I'd like to see him come off the ventilator. Page 19

20 Neonatologist-5: Neonatologist-5: Primary How do you feel about him? I have good feelings. You have good feelings? I have good feelings about him. I think that he will come off the vent and surprise everyone. And that doesn't go on any... I mean, I m not working on any diagnostic or anything, that's just how I feel about him. [46:45 Begin Scene 15 for Study Guide] I only know what you've been told via what the other attendings have talked with me about, so it would actually help me a little bit if you tell me sort of what you understand about Thomas's problems right now. You know I think it is a lot of the unknowns, there's no definite answer. Like I told you when I met you... I need the answers, I mean, it's tough! It feels like we have no control. We're parents in a way, but when we're not here, or when we are visiting He's my son, yes, but it doesn't feel You can't take him somewhere, you can't show him off, you can't... What worries you the most? His heart. His heart worries me the most. And Travis. It's still tough. She handles it a lot better than I do. That's part of me. Like I said, after Travis passed away OK, now we have to get to know Thomas, and what's going on with him. He was there, but we had concentrated on Travis. But, it's hard to keep coming, to come up and Do you ever talk about Travis at home? No, not really. What do you talk about? How close do you get, and then get blown away what happens. Five days? Five days was a lot! Page 20

21 It must be hard not to be able to hear that everything s OK, everything is going to be OK. That you don't have to worry about this anymore, it's not going to happen. It must be hard, and I wish we could tell you that. Do you want me to tell you how I think he's doing? Sure. I'm pleased with how he's doing, compared to when I was covering last, which was about a week ago. [49:45 Begin Scene 16 for Study Guide] Nurses: (off camera) Heart rate? I know I'm getting air through that OG tube there. I'm not sure he is intubated? He's definitely intubated. Respiratory Therapist: Have you checked the airway? Nurses: He's really got a leak. What size tube? It's 3-0. Nurses: Go ahead and bag him. OK. Get the other tube ready. As soon as it's ready, I'm going to re-intubate him. Do you have the other tube? Give me the tube. OK, bag him. Stethoscope. That s really tight. All of you remember this lesson. Whenever a baby is not responding, think of the airway. I don't care what you hear, what you see. Anything else. If a baby doesn't respond, think of the airway. You could have a tube in the esophagus and think you are moving the chest, you can think you hear good breath sounds. But until you are sure the tube is in, if the baby is not responding, that's your first priority. OK, Thomas. Page 21

22 August Developmental Pediatrician: I think the general thing is that people are just impressed by how far he's come and how well he is doing. But I think part of it was trying to make a good discharge care plan for when home and to help with the transition for nursing care. I think it's just nursing issues and vendor issues. Physically, I think he needs an echo done before he goes. Tom and Gayle look forward to bringing Thomas home. But the cardiologists recommend widening a faulty heart valve. [51:55 Begin Scene 17 for Study Guide] I'm just surprised that they didn't look at this sooner and say, Hey! Now we're in October. No. Everyone was excited about Sept. 4th... now it's October. Now it's just a big pain in the ass. (to Gayle) What do you say... it doesn't matter. He needs to have it done... What they're saying is the risk of him having an adverse event at home is tremendously lessened by relieving the obstruction. If we send him home before that, then you're incurring a bigger risk that he'll do something at home. Do you know why this didn't come up a couple of weeks ago, when we started talking about discharge? I don't I don't know why. I'm at the end of my rope... It' been a long, long year. And now we're Now it feels like we are starting over! Now we've got another Page 22

23 problem, now we've got to deal with this problem. Now we re back to re-intubating Why are they rushing just to get him home? Because, him staying here You rush it, you'll fuck up Him staying here for two more months is not helping him I realize that Exactly, but for him to rush it to get him home and screw up doing the procedure But honey, they're not rushing the procedure, they are just pushing the date up. They are not going to say OK, instead of an hour that we need, we are only be able to do a half hour They did an echo a month ago. They didn't say 'boy, we should consider in a month maybe doing this?' I don't think they knew that he was going home this early. It was not an issue to do, whether he came home or not. You see, you don't understand the anesthesia thing. The doctor on hernias did not want to use general anesthesia, because of his size. and having to intubate him. Exactly, but the heart doctor doesn't mind doing it. His heart is a major issue. Tom, his hernias are not a life-threatening problem to him, but the anesthesia could be a life-threatening problem to him. OK? The heart is a life-threatening problem, but the heart So what I'm saying is we are going to use two life-threatening issues to fix his pulmonary valve now to get him home. But what they said, waiting six months I m not saying six months Page 23

24 doesn't reduce the risks of the anesthesia. I have problems with this. Well, that's fine. And if you want to override my decision, that's up to you, but I'm not going to have someone operating on my son that has a bunch of ifs when I can go get a second opinion. And I may still get ifs, but at least I'll have a second opinion. That's fine, then, fine. After getting a second opinion, Thomas' parents agree to the procedure. Resident: And from that standpoint, he's ready to go home. So... I think he's ready to go home! Neonatologist-5: [Off Camera]: Neonatologist-5: Resident: Home Care Neonatologist-5: Resident: You didn't want us to find any more excuses to keep him here? Oh no, no! All righty! Are you ready? He has a lot of follow-up appointments that need to be arranged. Nursing can go into the home today. They had planned on it, so they can be there and these guys are ready. The respiratory therapist will be at the house with the rest of the equipment. Well, I can't disappoint all those people. All right, let's do it. Ophthalmology, general surgery, BPV clinic to start with Where's Tom? Page 24

25 [Off Camera]: Working. Working! Where else would Tom be? Geez, he's missing this big But he'll be home to receive him Yup! Great. Everything went smoothly, I heard, on Friday? No problems? Great. Tom feel any more relieved now that its over? I think so. I'm glad this phase is over. Finally. Hopefully it s all uphill from here. I hope so Five and a half months after his birth, Thomas was discharged home. For additional information about this program contact: Fanlight Productions (800) Page 25

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