Dreams and Dilemmas (40 minute version)

[00:00:06.50] Sort of see a face right in here.

[00:00:08.50] Yeah.

[00:00:09.50] [LULLABY PLAYING]

[00:00:23.00] See if I can get a profile here. It's moving its mouth there.

[00:00:34.50] Yeah, yep.

[00:01:00.50] OK, you're all set.

[00:01:01.88] Mm-hmm.

[00:01:04.34] Hey, Tom, come on in. This is baby B. This is the one that had some fluid on board.

[00:01:14.05] OK.

[00:01:14.86] And he's moving around, as you can see. He's nice and bright red. He's oxygenating well. We're breathing for him with the tube that we talked about. But he's very active, and his brother is behind you.

[00:01:28.32] We're helping both of them breathe. They're both stable. They're pink. Their heart rate is fine. The next step is we're going to give the surfactant material down in the lungs. But so far, everything is going really pretty well.

[00:01:42.87] 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, and we did put tubes in both of their airways, which we planned to do from the outset really to make this transition as smooth as possible. We control their breathing right after they're born, including giving them some medicine in their lungs for immature lungs. So that's all been done both. Both of them tolerated it well.

[00:02:13.33] How's Mom doing?

[00:02:14.23] Good.

[00:02:16.48] You sure have a bunch of family out there waiting to hear news.

[00:02:19.06] Yeah, yeah, we all stick together. That's the good part.

[00:02:23.74] That's great.

[00:02:25.62] One pound, four ounces and two pounds, five ounces.

[00:02:28.11] Yeah.

[00:02:29.04] Yay.

[00:02:29.89] Good job.

[00:02:30.73] Doctor sounds pretty optimistic, though.

[00:02:32.62] Yeah.

[00:02:33.08] We're not through the crisis, but he sounds optimistic.

[00:02:54.73] Yeah, we had good family support, I've got to say. Everybody from the family was up yesterday. So Doc Edwards, you know, mentioned the problem with the brain. And it's easier hearing it from a doctor tell your parents than it is from--

[00:03:11.17] Mm-hmm.

[00:03:13.64] But today's the day we find out a little bit more, and take it from there. Like I said to Gail, you know, he's here. We don't-- we just don't do nothing for him.

[00:03:36.79] 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 growing and, in fact, probably began to atrophy. And the brain has not developed up to what a 26 week brain should have developed to.

[00:04:06.13] It looks pretty awful to me in terms of degree of involvement. It's both sides. It's really extensive throughout. The question is going to come up of is this brain severely damaged enough that there doesn't-- the baby shouldn't-- there's an option for limiting the amount of support that we do.

[00:04:28.87] Great. So it would be good to--

[00:04:31.08] Or maybe removing the baby from support.

[00:04:32.28] Right, I think that maybe might be a reason to go ahead and do something else. But I think the prognosis is really going to be pretty grim.

[00:04:54.00] Yeah, it's a really worrisome sign that his head circumference is below the 10th percentile in the face of growth retardation, when it should be actually up to the fiftieth percentile or so. So that is in keeping with the observation that this is a destructive event that took place to the brain a number of weeks prior. The brain basically was either stopped in its growth or has been destroyed and basically fluid filling up the available space. So it all sort of fits with this being a severe, pretty longstanding brain destruction.

[00:05:33.87] Last night at the bed side, I think it was the father made the comment that they brought these boys into the world, and they were meant to be here, both of them.

[00:05:43.90] You need 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 decision though.

[00:06:05.76] So I understand you to say that you would leave the parents free to say, well, what you're saying, our determination is to cease and desist on support and let him go? If they were to say that to you, you would agree?

[00:06:16.91] I would agree to that.

[00:06:19.23] Well, isn't that more compassionate if, indeed, your prognosis is clear?

[00:06:24.05] I'm not saying I wouldn't reach that point of directing them. I want to sort of see where their thought process is right now.

[00:06:33.12] I just 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.

[00:06:42.58] I told you some pretty heavy news, and I just need to sort of hear how you've thought about it over the night.

[00:06:47.78] I think what we understood is that we would have a severely brain-damaged child with cerebral palsy.

[00:06:57.36] Do you have friends, do you know any kids who have handicaps from brain problems?

[00:07:03.37] Well, we know some people.

[00:07:04.51] Yeah.

[00:07:05.05] And what are they like?

[00:07:06.59] Uh, we know one little girl that had cerebral palsy, but she's-- I guess there's different stages of it. This girl, she walks, and she's a normal, you know-- but she does have it. And she's been progressing better and better.

[00:07:23.99] A lot of people's sort of image of what we're talking about is affected by what their personal experience has been. You know, kids in the school or kids of family members or-- so I wanted to, if you have any personal family sort of contacts, it's helpful for us to know what your experience has been.

[00:07:44.55] My father drives a handicap school bus with children on there.

[00:07:48.88] I see. Well, um, let me just be clear about what I think is going on. We went over it again with Dr. Sergeant today, with the films, and reviewed it. And we're pretty solid about what we think it shows. It shows that there's really very, very severe damage on both sides of the brain. And it looks like just from things that aren't quite as definite on the ultrasound that the brain really is smooth and hasn't really continued to develop normally.

[00:08:31.52] So we think he had really a 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? 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.

[00:09:10.90] The type of damage that Travis has is associated with damage to his intellectual ability as well, not just to his muscle problems. And so the chances of him learning to communicate, you know, learn skills, grow and develop, and be a child who reacts and learns normally is very, very poor. I'd say virtually nonexistent, from the amount of injury that's there.

[00:09:49.40] That's pretty much the conclusion that Dr. Sergeant and I agreed on when we reviewed the films this morning.

[00:10:00.35] That's really--

[00:10:02.62] It's not fair. With this severe amount of brain injury, some parents feel that this is a life that, for their child, is not one that they would want, they don't feel their child would want, if they're not able to have a normal functioning life. And some parents feel that that outcome is worse than the child dying.

[00:10:42.04] Mm-hmm.

[00:10:45.63] Other parents feel very strongly for, 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's the best thing for him to do all the support for an indefinite time.

[00:11:26.08] So we have a lot of problems that are still ahead of us, and we don't need-- we're not going to make any decision right now. And I don't want to and don't expect to. I think what we really need to talk about is what possible decisions there are to make. And we haven't changed anything at all about how we're taking care of him, OK? He's still a special baby.

[00:12:26.36] You know, if they could just tell me. The wheelchair doesn't bother me so much, it's just the other stuff. And I said, well, what would you, you know, I said, obviously you want him to be home playing baseball. That would be your ultimate thing, but what kind of quality of life, what would you consider to be a quality life? He said, I guess as long as he could say hi to mom and dad and eat. If he didn't walk but he had be in a wheelchair, that would be OK.

[00:13:03.41] And I said, well, I said, again, I don't have a crystal ball. But how would you feel-- I said, 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? And he said, that would absolutely be awful. He said, that's no life for him. That's no life for us.

[00:13:31.15] So and then he said, you know, it's kind of hard because Gail is Catholic, and I'm not. And she has much stronger faith than I do, and I feel like she feels like God is going to intervene some way and give us a sign to go a certain way. But he says, I don't feel that way. And he says, 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.

[00:14:10.21] Now, if he pulls out of being early, at least his prematurity, what are we, you know-- I mean he's going to be able to breathe on his own as far as that stuff goes? I guess that's what I'm asking.

[00:14:27.07] The likely outcome is that he would not be able to learn to walk. It's very unlikely that he would learn to voluntarily feed himself. I think he would probably be able to learn to suck and swallow, but that may take a long, long time. I think 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-- pretty unlikely.

[00:15:27.71] OK. How far can we go? Say, if something more happens. You know, with not just the brain on Travis but something-- he gets more problems, more troubles. How far can we go before we say, enough is enough?

[00:16:24.69] I think that's a decision we can make at any point.

[00:16:31.77] I just don't want to get to a point where you say it's too late.

[00:16:53.33] I understand what you're saying. Even doing all the things that we're 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's not requiring a whole lot of support on the ventilator. He's not on actually hardly any oxygen.

[00:17:24.36] And I think one of the things that we probably should clarify today is if something like that did happen, like, if he were to have an arrest, if his heart stopped beating, or something beyond what we're 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 that if he were to reach a point where he would need in order to survive to go through a code, that's something that I can put as a clear order on the chart that we will not do that. But I need your understanding that that's something the we wouldn't intervene if he had a problem like that.

[00:18:29.26] It doesn't mean that we would change anything else in our approach to caring for him.

[00:18:47.05] [WHISPERING]

[00:18:58.01] I think taking time to understand what's going on and sort out your feelings and, um, for you to get over the initial shock of all you've been through is a good thing. And I don't think we're at a point where you're concerned that we've gone beyond the point where we've done more than we should have. OK? I just want to be sure that I understand that you're OK with me writing an order that if he has an arrest, then we won't go through a code.

[00:19:49.76] I'm OK with that.

[00:19:51.26] Yes.

[00:19:51.75] OK.

[00:20:13.25] This family is 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 sort of decide what's right to do. What I'm interested in is hearing from people primarily involved in the care of what do you think you would do? If it were your decision to make, what would you do with this child?

[00:20:39.39] All of you've been here. All of you've been around. You know the amount of brain injury. You know the whole scenario. It's a growth-retarded, extremely small baby. Just what I'd like to hear from each of you, what's your own feeling of what's right to do for him?

[00:20:57.51] I think we're close to missing our window of opportunity almost. He's getting down on his ventilator. I feel like he's probably going to spite us and--

[00:21:07.74] Maybe he might survive in spite of stopping the ventilator.

[00:21:12.06] Yeah.

[00:21:12.44] OK.

[00:21:13.89] I understand where the parents are at. I think it's hard for parents to give up hope, but I would stop. But 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.

[00:21:30.35] We often don't think about what life is like later on for these kids and the families. And 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's a 25-week, growth-retarded baby with a Swiss cheese for a brain, why should we keep him alive?

[00:21:58.53] Because I think that it would be better for him not to survive. I think that it would be overwhelming for his parents, and it would affect his family for the rest of his life.

[00:22:13.04] This is pretty much what I expected, that everyone would reach the same opinion that it was appropriate in Travis's best interest to stop. The reason I wanted to ask this is because I think there's 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 that they want us to continue and have him come through and survive.

[00:23:23.37] Yeah, I think we should give the baby the benefit of the doubt, too, but having said that, I think it's very likely that it's more than--

[00:23:31.52] Smoother than it should be.

[00:23:32.49] That it's smoother than it should be.

[00:23:42.27] Well, see, now this is not good. I think that's pretty definitely predictive that the kid will have sequelae. It's unlikely that bilateral infarcts in this area will end up without any sort of neurodevelopmental sequelae, but it doesn't necessarily predict 100% really awful outcome, in contrast to the other twin.

[00:24:08.48] Right.

[00:24:09.27] It has the small head and the big cystic areas.

[00:24:14.15] One of the things we were looking for was whether the fluid, the ventricle, 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.

[00:24:42.32] It doesn't mean that there's not still a potential problem there, but it's certainly not as bad as it might be. There's not big holes that are forming there in that area that we looked at. So--

[00:25:02.33] Well, that's good.

[00:25:03.02] --that's good. That's good. That's good.

[00:25:17.94] There's a lot of reasons why his heart could be thick and over functioning. None of them are very common, and none of them are very easy to prove as far as I can tell. So it's really a lot of unknowns.

[00:25:37.71] Even though there were several findings on the heart, I don't think that's necessarily what's causing him trouble right now. I think that's more a lung problem.

[00:25:46.72] Right, [INAUDIBLE].

[00:25:47.77] And, yeah, some fluid in his lungs, some scarring of the lungs, because he needed so much support early on.

[00:25:53.88] I never thought having children would be this difficult, to be honest with you. I mean, I got two perfectly healthy ones there, you know?

[00:26:01.22] Yeah, those are the others, huh?

[00:26:02.68] Yeah, that's Custer and Patrick.

[00:26:06.14] Oh, wow. How old are they?

[00:26:09.55] Two and five.

[00:26:11.38] They're just adorable.

[00:26:25.03] 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, that they were really finding that they were coping in different ways.

[00:26:52.03] I think, first of all, maybe he realizes that there's nothing we're going to be able to do to change what the outcome is. And it doesn't help anybody to sit there and keep talking about it when there's really nothing we can do. We're just going to have to take what comes.

[00:27:26.88] It sounds like, but tell me if I'm putting words in your mouth, that you're feeling like you're just trying to make ends meet and--

[00:27:38.78] Oh, money's not the-- I just, coming up here and with Travis, I deal with it differently. I just, you know, 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, I mean, it's 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 says, I'm changing. There's a lot of things that are going to change, you know?

[00:28:14.40] I mean, for two weeks straight he was ugly the whole entire-- you know, I think he just gets so over tired. And every little thing just sets him off, and it's just a point of--

[00:28:33.10] Have you talked about Travis much?

[00:28:36.89] No, not really, I think now we're just so involved with him. I said it's actually-- the first week when they were born, Thomas was kind of, like, on the sidelines in a sense because we were trying to emotionally get things with him.

[00:28:53.39] Right, because Travis was so sick right away.

[00:28:55.13] Right, and then it's, like, so now we've got to get to know this one and figure out what's going on with him. You know, and I think the problem is that just things look good, and you get knocked down. And now with his heart, it's an iffy.

[00:29:15.35] It's tough when you ask the doctor, how are we looking for an outcome, and he can't tell you. It's too soon. How do you go home and set up a room? You know, how do you do that? You leave here with a lot of ifs.

[00:29:34.25] Limbo.

[00:29:35.19] Yeah. I just look at that stuff different than she does. When Travis had his problems, Gail had a decision already made. When the doctor's spoke to us about him, Gail said, OK. She accepted the decision. And I think her family did as well.

[00:29:58.74] Which was?

[00:30:00.12] Which was Travis's time to take him off his supports. He made his own decision, yeah, and I still re-- you know, but I'm 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 where he makes a decision, that's one thing.

[00:30:29.98] It's me and her. It's our children. This is Gail. She tells her mother everything. I don't believe in that.

[00:30:35.53] What our problems are, it's 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 life.

[00:30:45.65] But my parents have also dished out quite a bit of money since this has gone on.

[00:30:50.33] Not the point, your parents do not need to know our financial problems, our life, anything else. And that's a problem I have. She goes and tells her parents everything. I mean, come on. This is our personal life. This is our personal business. I told her, I'd be surprised if this marriage lasts through what we're going through. And I guarantee you, after this is done, she'll be right over at mother's, exactly the way it runs.

[00:31:24.05] He thinks we'll be losing Travis, and I've just gone on. That's that.

[00:31:30.21] That's not what I hear Tom saying. He's saying--

[00:31:34.80] No, but that's what her and her family are saying.

[00:31:37.38] What I heard you say was because of Travis's loss, it's very hard to keep on coming.

[00:31:43.15] It is. I drive by that cemetery every night of the week, every night. I stop there quite a bit. This is part of us. This isn't like you see happen to somebody else. She deals with it different.

[00:32:04.20] I mean, you can't keep everything built up. The only free time that I get away from the kids is usually when I come here. That's it.

[00:33:01.93] 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 of talking about taking Travis off, and Gail 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.

[00:33:27.58] I can see that Tom might not be able to withdraw support. I have no idea what he would say.

[00:33:33.10] He agreed to the do not resuscitate with Travis.

[00:33:36.50] He and she agreed to it simultaneously in the course of the discussion with Bill. And I guess that's what I'm suggesting. I'm not suggesting that we actively withdraw support at this point in time.

[00:33:51.44] It would actually help me a little bit if you told me sort of what you understand about Thomas's problems right now.

[00:33:59.43] I don't know. I think it's a lot of the unknowns. It feels like we have no control. We're parents in a way, but when we're not here or when we're visiting, I don't know. It 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.

[00:34:32.28] What worries you the most about him, I guess?

[00:34:34.03] His heart.

[00:34:34.54] How about that?

[00:34:35.04] His heart-- his heart worries me the most.

[00:34:39.20] It must be hard to not be able to hear everything's OK. Everything's going to be OK. You don't have to worry about this anymore. It's not going to happen.

[00:34:48.73] Right, exactly.

[00:34:50.02] 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?

[00:34:57.02] Sure.

[00:35:03.61] I'm pleased with how he's doing compared to when I was covering last.

[00:35:10.68] I know I'm getting air through that OG tube there.

[00:35:13.84] I'm not sure he's intubated.

[00:35:15.93] Get the other tube ready. As soon as you're ready, I'll just reintubate him.

[00:35:19.38] Here you go.

[00:35:19.88] We're [INAUDIBLE] [? going to have difficulty tagging him. ?]

[00:35:21.85] You got the other tube?

[00:35:22.84] And pull the other one out.

[00:35:23.83] [INTERPOSING VOICES]

[00:35:26.79] Go ahead. Let me just reintubate him. Give me the tube. Bag him.

[00:35:36.67] That's really tight.

[00:35:39.14] Stethoscope.

[00:35:40.13] [INTERPOSING VOICES]

[00:35:46.55] OK, I want all of you to remember this lesson. When a baby doesn't respond, think of the airway. You can have a tube in the esophagus and think you're moving the chest. You can think you're hearing good breath sounds, but until you're sure that that tube is in, if the baby's not responding, that's your first priority. OK, Thomas.

[00:36:16.01] And I think the general thing is that people are just impressed with how far he's come and how well he's doing. But I think part of it was trying to really make a good discharge care plan for when he goes home and to help with the transition with nursing care.

[00:36:32.31] I think it's just nursing issues and vendor issues. I mean, physically, I think he needs an echo done before he goes.

[00:36:47.86] I'm just surprised that they didn't look at this sooner and say, hey. Now, we're October. Everybody's excited. It's September 4th. Now, it's October. Now, it's just a big pain in the ass.

[00:37:06.81] Do you know why this didn't come up, like, a couple weeks ago when we started talking about discharge?

[00:37:13.32] I don't. Um, I don't know why.

[00:37:23.96] I'm at the end of my rope. It's been a long, long year, and now we're at this. It feels like we're starting over. Now, we've got another problem. We've got to deal with this problem. Now, we're back to reintubating. Now--

[00:37:35.83] Why is he rushing just to get him home?

[00:37:38.31] Because him stay--

[00:37:39.25] You rush, you fuck up. Listen.

[00:37:41.06] No, you rush, you fuck up.

[00:37:41.68] Him staying here for two more months is not helping him.

[00:37:46.19] Exactly, but him to rush it to get him home and screw up during the procedure--

[00:37:50.84] But, honey, they're not rushing the procedure. They're just pushing the date up. They're not going to say, OK, instead of an hour that we need, we're only going to be able to do a half hour.

[00:37:59.10] They did an echo a month ago. They didn't say, boy, we should consider in a month maybe doing this?

[00:38:06.77] I don't think they knew that he was going home this early.

[00:38:25.58] Where's Tom?

[00:38:27.06] Working.

[00:38:27.83] Working. Jeez, he's been--

[00:38:29.87] Where else would Tom be?

[00:38:30.24] He's missing this big-- well, he'll be home this evening.

[00:38:32.26] I know, yep.

[00:38:34.92] I'm glad this phase is over.

[00:38:37.63] Oh, finally.

[00:38:41.23] Hopefully, it's all uphill from here, huh?

[00:38:43.63] I hope so.