Dreams and Dilemmas

[00:00:03.47] I can sort of see the face right here.

[00:00:05.45] Yeah.

[00:00:20.30] Let's see if we can get a profile here. See look at his mouth.

[00:00:31.68] Yeah.

[00:00:32.18] Look at his mouth.

[00:00:32.67]

[00:00:51.02] Well, we've got the problems of prematurity. But on top of that, we've got the special problems of both the twins. Each one has a different problem, which unfortunately is on top of being only 25 weeks.

[00:01:07.84] But I think we're going to have a pretty hard time of it with both of the twins. Even if we're 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'm not sure how quickly we'll be able to tell with certainty what's going on there.

[00:01:34.53] Just from the standpoint of how their lungs and hearts are working, it may be more than we're able to support. I just don't know. So there's going to be pretty much activity going on for the first 10 or 15 minutes around both of them. But as soon as we're able to let you know whether we're able to stabilize them right after delivery, we'll come and talk with you.

[00:01:58.05] OK.

[00:02:01.42] Guide the baby in the first 10 minutes [INAUDIBLE].

[00:02:07.07] Let me watch the test movement baggie.

[00:02:10.59] Heart rate's OK. Good job.

[00:02:15.05] Identical twin boys?

[00:02:16.53] Yes.

[00:02:18.20] Does she have names picked out yet?

[00:02:19.93] Yes.

[00:02:20.20] Thomas and Travis. This one's Thomas and Travis, but I don't know which is which.

[00:02:24.04] [LAUGHTER]

[00:02:27.76] We'll get a weight before we-- or give [INAUDIBLE] first. Those weights are going to be--

[00:02:33.91] Accurate.

[00:02:34.86] --accurate.

[00:02:35.82] OK, you're all set?

[00:02:36.86] Uh huh.

[00:02:39.60] Hey, Tom. Come on in. This is Baby B. This is the one who had some fluid on born.

[00:02:49.27] OK.

[00:02:50.22] 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.

[00:02:59.32] Yeah.

[00:03:00.10] But he's very active, and his brother's behind you.

[00:03:03.53] We're helping both of them breath. They're both stable. They're pink. Their heart rate's fine. The next step is we're going to give the surfactant material down in the lungs.

[00:03:13.94] OK.

[00:03:14.52] But so far everything's going really pretty well. Particularly, we're 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?

[00:03:29.35] Yeah. And does he have fluid on the brain as well?

[00:03:33.96] It's the smaller one that there's a question about fluid on the brain.

[00:03:37.57] OK.

[00:03:38.34] And 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 me. I don't see anything by physically examining them. It's a guess, but I can't really tell that much until we assess. This one has fluid mostly in the skin, but so far, so good.

[00:04:07.70] Ready to give [INAUDIBLE]?

[00:04:08.51] Yep.

[00:04:09.72] 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'd planned to do from the outset to really make this transition as smooth as possible. We controlled their breathing right after they were born, including giving them some medicine in their lungs for immature lungs. So that's all been done. Both of them tolerated it well.

[00:04:40.17] The complications that they were talking about before was the water--

[00:04:44.43] On the brain of the--

[00:04:45.05] The water on the brain of the smaller one.

[00:04:47.03] Yeah.

[00:04:48.28] The only thing I can tell you is by examining him, his head size doesn't appear to be larger than normal and doesn't feel like there's any fluid pressure by examining him. But there's really a limit of what I could tell by just feeling his head.

[00:05:03.03] So you seem pleased.

[00:05:04.87] I'm very pleased right now.

[00:05:06.09] Oh great. Wonderful.

[00:05:08.02] So far, so good.

[00:05:10.06] I told you they'd be good. How's mom doing?

[00:05:14.87] Good.

[00:05:17.37] You sure have a bunch of family out there with you to hear news.

[00:05:20.11] Yeah. We all stick together. That's a good part.

[00:05:24.66] That's great.

[00:05:26.55] One pound, four ounces and two pound, five ounces.

[00:05:30.03] Yay.

[00:05:30.37] Good job.

[00:05:31.50] Doctor sounds pretty optimistic though.

[00:05:33.20] Yeah.

[00:05:34.66] We're not through the crisis, but he sounds optimistic.

[00:05:55.26] And we had good family support, I got to say. Everybody from the family was up here to see us. But Dr. Edwards mentioned the problem with the brain and it's easier hearing it from a doctor to tell your parents. But today's the day we find out a little bit more and take it from there. Like I said to Gayle, he's here, you just don't do nothing for him.

[00:06:39.46] 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.

[00:07:08.81] It looks pretty awful to me in terms of degree of involvement, as both sides, it's really extensive throughout.

[00:07:17.26] But the question is going to come up of is his brain severely damaged enough that the baby shouldn't-- as an option for limiting the amount of support that we do?

[00:07:31.47] Great. It's when we--

[00:07:33.07] Remove that baby from support.

[00:07:34.20] Right. I think that's maybe a reason to go ahead and do something else. But I think the prognosis is really going to be pretty grim.

[00:07:56.78] It's a real 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 50th percentile or so. So that is in keeping with the observation that this is a disruptive event that took place to the brain a number of weeks prior. That the brain basically was either stopped in its growth or has been destroyed, and basically fluid filling up the available space. So it all fits with this being a severe, pretty longstanding brain destruction.

[00:08:36.58] Last night at the bedside, I think it was the father made the comment that they'd brought these boys into the world and they were meant to be here-- both of them.

[00:08:46.81] Well, what they said to me was that they'd been told that the baby's brain damage was probably severe but they're their children and they'll take care of them. So they didn't specifically say what they thought that meant.

[00:09:08.70] I think 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.

[00:09:31.31] So I understand you'd said 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?

[00:09:42.08] I would agree on that.

[00:09:43.98] But isn't that more compassionate if indeed your prognosis is clear?

[00:09:49.44] I'm not saying that I wouldn't reach that point of directing them. I want to see where their thought process is right now.

[00:09:58.75] I just think 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.

[00:10:08.23] I told you some pretty heavy news and I just need to hear how you've thought about it over the night.

[00:10:13.43] I think what we understood is that we would have a severely brain damaged child with cerebral palsy.

[00:10:22.59] Do you have friends? Do you know any kids who have handicaps from brain problems?

[00:10:29.01] Well, we know of some people.

[00:10:30.24] Yeah.

[00:10:30.61] And what are they like?

[00:10:32.60] We know one little girl that had cerebral palsy, but I guess there's different stages of it. This girl, she walks and she's normal. But she does have it, and she's been progressing better and better.

[00:10:49.63] A lot of people's image of what we're talking about is affected by what their personal experience has been-- kids in the school, or kids of family members. So if you have any personal family contacts, it's helpful for us to know what your experience has been.

[00:11:10.18] My father drove a handicapped school bus with children on there.

[00:11:13.81] I see.

[00:11:16.06] Well, let me just be clear about what I think is going on. We went over it again with Dr. Sargent 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. 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.

[00:12:10.20] 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, 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.

[00:12:53.95] 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, learn skills, and 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. 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.

[00:14:00.54] 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. 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' injury is severe enough that we would raise the question of whether it's the best thing for him to do all of the support for an indefinite time.

[00:15:10.53] Now, having said that, let me just tell you where we are right now. I don't know what would happen if, for instance, we were to take him off the ventilator-- if he would pick up and breathe on his own, for instance. Right now we're supporting him with IVs; he's not being fed. And even without the brain problem, those are hurdles that he would have to get through to make it through this to be ready to go home.

[00:15:43.36] So we have a lot of problems that are still ahead of us. And we're not going to make a decision right now-- 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. We haven't changed anything at all about how we're taking care of him, OK? It's still a special baby.

[00:16:45.31] Now, if he pulls out of being early, obviously his prematurity, he's going to be able to breathe on his own as far that stuff goes? I guess that's what I'm asking.

[00:17:01.39] 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 unlikely.

[00:18:02.40] OK.

[00:18:14.37] [SOBBING]

[00:18:36.83] How far can we go? Let's say if something more happens with, not just the brain on Travis, but he gets more problems, more troubles. How far can we go before we say enough's enough?

[00:19:01.09] I think that's a decision we can make at any point.

[00:19:06.85] I just don't want to get to a point-- what did he say? It's too late?

[00:19:28.44] 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 hardly any oxygen.

[00:19:59.47] 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, 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 in the chart that we will not do that. But that's something I need your understanding that that's something that we wouldn't intervene if we had a problem like that.

[00:21:04.36] It doesn't mean that we would change anything else in our approach to caring for him, and I absolutely think that's the right thing. You mentioned was there a point that we've gone too far and it means that we haven't allowed God or what's right to take a hand and decide that it's not right for him to survive.

[00:22:12.82] You take your time to understand what's going on and sort out your feelings and try 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 the word that if he has an arrest that we won't go through a code.

[00:23:04.87] I'm OK with that.

[00:23:05.87] Yeah, OK.

[00:23:28.74] If they could just tell me the wheelchair doesn't bother me so much, it's just the other stuff. And 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?

[00:23:49.19] He said, as long as he could say hi to mom and dad and eat. And if he didn't walk but he had to be in a wheelchair, that would be OK. And I said, well, I don't have a crystal ball, but how would you feel 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.

[00:24:28.90] He said, that's no life for him. That's no life for us. And then he said, it's kind of hard because Gayle is Catholic and I'm not. And she has much stronger faith than I do, and she feels like God is going to intervene some way and give us a sign to go a certain way.

[00:24:54.62] 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.

[00:25:15.36] 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 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?

[00:25:41.51] All of you have 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 is from each of you what your own feeling of what's right to do for him.

[00:25:59.63] 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.

[00:26:09.86] Maybe he might survive in spite of stopping the ventilator?

[00:26:14.17] Yeah.

[00:26:14.60] OK.

[00:26:15.90] 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.

[00:26:32.50] 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 lifelong issues. And if he's a 25-week, growth retarded baby with a Swiss cheese for a brain, why should we keep him alive?

[00:27:00.56] Because I don't 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.

[00:27:15.05] I think it's in Travis's best interest, and his family's in the long run, to let him die.

[00:27:21.40] This is 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 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.

[00:28:36.30] You know, they're in good hands. We only had a good five days with Travis, which at least we had that with him.

[00:28:49.47] I still need to go down, pick out a stone for him. That's a hard part. It's just so final, but it's got to get done. The longer we put it off the tougher it is. You never think it happens to you though.

[00:29:23.93] I think we should give the baby the benefit of the doubt, too. But having said that, I think it's very likely to think it's--

[00:29:32.07] Smoother than it should be.

[00:29:33.07] It's smoother than it should be.

[00:29:44.26] This is not good. I think that's pretty definitely predicting that the kid will have sequelae. It's unlikely that bilateral infarcts in this area will end up without any neurodevelopmental sequelae. But it doesn't necessarily predict a 100% really awful outcome in contrast to the other twin.

[00:30:08.98] Right.

[00:30:09.36] That has the small head and the big cystic areas.

[00:30:14.66] One of the things we were looking for was whether the ventricle in the fluid space was like, with the blood there, start building up. And also whether that area where there was whiteness might turn into the cysts like we saw on Travis. I don't see that, actually.

[00:30:36.10] And those bright areas back there are not bright anymore. It doesn't mean that there's not 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.

[00:31:02.85] Well, that's good.

[00:31:03.58] That's good. That's good.

[00:31:13.80] He's having a new problem with his respiratory right now-- wheezing, a problem with pulmonary fluid, [INAUDIBLE].

[00:31:20.54] And still metabolic acidosis?

[00:31:22.53] Oh, he still has metabolic acidosis. He's had that all along.

[00:31:27.62] So he's coming in at a unstable afternoon. He's been keeping me busy. His oxygen is around 53% right now, which is kind of where he's been for the last 24 hours or so, but earlier this afternoon he was even higher.

[00:31:44.05] 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 it's really a lot of unknowns.

[00:32:04.24] Even though there's 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. Yeah, some fluid in his lungs, some scarring of the lungs because he needed so much support early on.

[00:32:20.40] I never thought having children would be this difficult, to be honest with you. I got two perfectly healthy ones, you know?

[00:32:27.13] Yeah.

[00:32:27.49] Those are the others, huh?

[00:32:29.00] Yeah, that's [INAUDIBLE] and Patrick.

[00:32:32.28] Oh, wow.

[00:32:33.09] Yeah.

[00:32:34.53] How old are they?

[00:32:35.68] Two and five.

[00:32:37.54] Well, they're just adorable.

[00:33:11.90] 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 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.

[00:33:38.89] 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, and in the meantime, let's get on with things.

[00:33:56.81] Do you have any idea what kind of outcome he'll have?

[00:34:01.19] It's not going to be good. But depending on how they are, I'm not sure how I would put it to them. I don't know enough about it and there's not enough data and time to say for sure what's going to happen. But I thing he's clearly going to have some problems, I just don't know what they're going to be.

[00:34:40.60] 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 in any other situation, perhaps this would be a baby where the nurse would make a decision that the baby wasn't stable enough or wasn't doing well enough at the time to come out and be held.

[00:35:12.28] And so we were talking this morning about maybe that is all she has. That is all that she has to look forward to is to coming here and holding him. And if that's the way that she can cope with it because that's the only pleasure or good thing that she has going for her in this situation, then maybe we need to go with it and we need to help her.

[00:35:39.88] How's dad? Anybody know?

[00:35:43.14] I haven't seen him for weeks.

[00:35:47.30] I just hear that they're coping differently and that he's working very hard and--

[00:35:52.78] Well, I'll call him again.

[00:36:09.77] 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--

[00:36:20.76] Eh, money's not the aspect. Just coming up here and with Travis it's-- 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, it's very emotional.

[00:36:44.03] It's harder to be here.

[00:36:45.30] 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, there's a lot of things that are going to change, you know?

[00:36:56.79] I mean, for two weeks straight, he was ugly. I think he just gets so over-tired and every little thing just sets him off. And it's just the point of--

[00:37:15.02] Have you talked about Travis much?

[00:37:19.24] No, not really. I think now we're just so involved with him. The first week when they were born, Thomas was kind of on the sidelines in a sense because we were trying to emotionally get things with him--

[00:37:35.79] Travis was so sick right away.

[00:37:41.15] After, it was like, OK, now we got to get to know this one and figure out what's going on with him. And I think the problem is just things look good and then you get knocked down. And now his heart, it's iffy. It's hard to tell if it's an obstruction from the muscle being so thick, or an obstruction from the valve not-- I mean, he's just so little. A bean.

[00:38:11.16] And 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? How do you do that? You leave here with a lot of "ifs."

[00:38:30.27] Limbo.

[00:38:31.21] Yeah. I just look at stuff different than she does. When Travis had his problems, Gayle had a decision already made. When the doctors spoke to us about him, Gayle said, OK. She accepted the decision, and I think her family did as well.

[00:38:54.78] Which was?

[00:38:55.69] Which was, Travis is-- time to take him off his supports. He his own decision, yeah, and I still re-- 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 the decision, that's one thing. Her side of the family, as well as her, make judgments without including me.

[00:39:35.15] I'm getting the sense, too, that Tom, you're feeling like Gayle may look to them for support, too.

[00:39:43.92] Well, I'm fine 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 children.

[00:39:56.28] This is Gayle, she tells her mother everything. I don't believe in that. 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 up, and her mother knows almost everything in our life.

[00:40:09.38] But my parents have also dished out quite a bit of money since this has gone around.

[00:40:14.44] 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 tells her parents everything.

[00:40:24.08] 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 because it's just small stuff I ask to have done. And I guarantee you, after this is done she'll be right over at her mother's-- exactly the way it runs.

[00:40:52.64] He thinks that me losing Travis and I've just gone on and that's that.

[00:40:58.80] That's not what I hear Tom saying. He's saying--

[00:41:04.01] No, but that's what her and her family are saying.

[00:41:06.46] What I heard--

[00:41:06.83] What?

[00:41:07.31] --I heard you say was because of Travis's loss, it's very hard to keep on coming.

[00:41:12.23] It is. I drive by that cemetery every night of the week-- every night. I stop there quite a bit.

[00:41:22.20] This is part of us. This isn't like you see something happen to somebody else. She deals with it different.

[00:41:30.32] 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.

[00:41:41.64] In order to have a family, have material things, you need to be able to work. And when the work is there, I'm going to take the work.

[00:41:53.94] 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.

[00:42:33.92] Well, maybe we shouldn't have anymore children. But no, you're against me going to see a doctor because I'm too young.

[00:42:46.71] That's a difficult decision to be making right now, I think.

[00:42:51.50] Not in my point. I'll be honest with you, I'm not having anymore children. And if it gets driven to me to have more children, I'll leave. I'm not having anymore children.

[00:43:02.85] This has taken enough out of me. I got two perfectly healthy ones at home. He comes home healthy, thank God.

[00:43:10.51] I'm not going to go through this again. It's not worth the headache. It's not worth it.

[00:43:16.42] Three children's enough. I don't want a big family. When she got pregnant, I wasn't game for it.

[00:43:24.63] I remember.

[00:43:25.20] I wasn't happy. I told her.

[00:43:29.26] We talked about that when we first met.

[00:43:31.02] Oh, you're too young, blah, blah. It's my decision. I'm not having anymore kids. No, none, zip, that's it. I'm done. She'd love to have five, six kids.

[00:43:42.03] You'd say that. Not after this.

[00:43:51.51] 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's very, very difficult to sort that out. Maybe when we do have some answers things will be easier for them.

[00:44:22.14] Is this the worst scenario, or is it not the worst scenario? You know what I'm saying?

[00:44:26.84] Nobody knows.

[00:44:27.83] Yeah. You just wish you knew somebody in the same boat so you could compare.

[00:44:38.67] Sometimes it's good to talk to a parent. Sometimes it's really helpful. But sometimes it can also be detrimental because you start comparing babies. If one baby gets better a lot quicker than your baby and they're the same gestational age or size, then you start wondering, well, what's wrong with my baby?

[00:44:57.43] They're very concerned about his heart condition. And for that reason, we're going to try and push to get an echo done two weeks after the previous echo, because the family really wants to know is this getting worse or not.

[00:45:21.68] 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 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 the severely handicapped child as well.

[00:45:47.33] I can see that Tom might not be able to withdraw support. I have no idea what he would say.

[00:45:52.57] He agreed to 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'm suggesting. I'm not suggesting that we actively withdraw support at this point in time.

[00:46:08.88] Seems to me in situations like this the big issue is, how do you feel about the baby? How do you think he's doing? Is he making progress? Is he not making progress?

[00:46:16.40] He's gaining weight. He always seems to bounce back from everything that has happened to him. I would like to see him off the ventilator.

[00:46:27.88] How do you feel about him?

[00:46:29.38] I have good feelings.

[00:46:30.88] You have good feelings?

[00:46:32.38] I have good feelings about him. I think that he'll come off the vent and surprise everyone. And I'm not working on any diagnostic thing, it's just how I feel about him.

[00:46:52.67] I only know what you've been told via what the other attendings have talked with me about. So you would actually help me a little bit if you told me what you understand about Thomas's problems right now.

[00:47:06.76] I think it's a lot of the unknowns. There's no definite answers. Like I told you when I met you, I need the answers. It's tough.

[00:47:22.94] Yeah, it's hard to--

[00:47:24.30] I mean, it feels like we have no control. We're parents in a way, but when we're not here or when we're visiting, it doesn't-- 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--

[00:47:57.09] What worries you the most about him, I guess?

[00:47:58.99] His heart. His heart. His heart worries me the most.

[00:48:02.86] His heart?

[00:48:03.57] Right. And Travis, he's-- it's still tough. She--

[00:48:12.61] She told me.

[00:48:13.62] Oh, yeah. She handles it a lot better than I do. That's part of me.

[00:48:20.66] Yeah.

[00:48:26.32] Well, like I said, after Travis passed away it was like, OK, now we have to get to know Thomas and what was going on with him. He was there, but we just kind of concentrated on Travis. It's hard to keep coming, to come up.

[00:48:50.94] Do you ever talk about Travis at home?

[00:48:57.34] Not really. What do you talk about? How close do you get and then get blown away by what happens? Five days-- five days was a lot.

[00:49:17.49] It must be hard to not be able to hear everything's going to be OK. You don't have to worry about this anymore. It's not going to happen.

[00:49:27.05] Exactly.

[00:49:28.32] 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?

[00:49:34.91] Sure.

[00:49:41.91] I'm pleased with how he's doing compared to when I was covering last which was about a week ago.

[00:49:47.70] Heart rate? I know I'm getting air through that OG tube there. I'm not sure he's intubated.

[00:50:01.45] He's definitely intubated is my guess.

[00:50:05.34] You got the airways? OK, Thomas, work quickly.

[00:50:09.74] He's really got a leak that's turning around.

[00:50:13.02] What size tubing?

[00:50:14.51] It's 3.0.

[00:50:15.99] Go ahead and bag him.

[00:50:19.46] This bag is too small.

[00:50:21.44] Get the other tube ready. As soon as you're ready I'm going to reintubate him because you'll probably have difficulty bagging him. You got the other tube?

[00:50:28.86] We pull the other one out?

[00:50:29.85] Just give me the tube. Give me the tube. Go ahead. Let me get it in. Give me the tube. Bag him.

[00:50:42.23] The air looks really tight on the stethoscope.

[00:50:45.69] How do you feel? I want all of you to remember this lesson. Whenever a baby's not responding, think of the airway. I don't care what you hear, what you see, anything else. When a baby doesn't respond, think of the airway.

[00:51:10.11] 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 down, if the baby's not responding, that's your first priority. OK, Thomas.

[00:51:32.92] 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.

[00:51:49.22] I think it's just nursing issues and vendor issues. Physically, I think he needs an echo done before he goes.

[00:52:04.60] 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. [INAUDIBLE]. It doesn't matter.

[00:52:31.89] He needs to have it done.

[00:52:36.46] What he's saying is that the risk of 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.

[00:52:53.83] Do you know why this didn't come up a couple weeks ago when we started talking about discharge?

[00:53:00.47] I don't. I don't know why.

[00:53:10.87] 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 got another problem. We got to deal with this problem. Now we're back to reintubating.

[00:53:22.64] Why's he rushing it just to get him home?

[00:53:24.98] Because, him--

[00:53:26.20] You rush, you fuck up. No--

[00:53:27.55] Listen--

[00:53:27.87] You rush, you fuck up.

[00:53:28.76] --him staying here for two more months--

[00:53:31.51] I realize that.

[00:53:32.03] --is not helping him.

[00:53:33.32] Exactly. But him to rush it to get him home and screw up during the procedure--

[00:53:37.99] 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.

[00:53:46.38] They did an echo a month ago. They didn't say, boy, we should consider in a month maybe doing this.

[00:53:53.55] I don't think they knew that he was going home this early.

[00:53:55.61] It was not an issue to do whether he came home or not. See, you don't understand the anesthesia thing. The doctor on hernias did not want to use general anesthesia because of his size.

[00:54:11.43] And having to intubate him.

[00:54:12.55] Exactly. But the heart doctor doesn't mind doing it.

[00:54:18.12] 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. The heart is a life-threatening problem. But the heart--

[00:54:39.36] So what I'm saying to you is we're going to use two life-threatening issues to fix his pulmonary valve now to get him home.

[00:54:44.68] But like he said, waiting for six months--

[00:54:47.97] I'm not saying wait six months.

[00:54:49.30] --but doesn't reduce the risks of the anesthesia.

[00:54:54.00] I have no confidence in them.

[00:54:56.45] Well, that's fine.

[00:54:58.41] And if you want to override my decision, that's up to you. But I'm not having somebody operate on my son that has a bunch of "ifs" when I can go and get a second opinion. And I may still get "ifs," but at least I get a second opinion.

[00:55:09.28] That's fine then, fine.

[00:55:19.76] And from his standpoint he's ready to go home, so I think he's ready to go home.

[00:55:25.29] You didn't want us to find any more excuses to keep him here?

[00:55:27.50] Oh, no, no.

[00:55:28.39] [LAUGHTER]

[00:55:29.74] All righty. And so far as--

[00:55:32.72] We're ready?

[00:55:33.49] You're ready?

[00:55:34.33] Yeah.

[00:55:35.18] He has a lot of followup appointments--

[00:55:38.36] I'll bet.

[00:55:39.62] --that need to be arranged. Nursing can go into the home today-- they planned on it, so they can be there. And these guys are ready, and the respiratory therapist will be at the house with the rest of the equipment.

[00:55:53.61] I can't disappoint all those people.

[00:55:55.03] No, you can't.

[00:55:56.07] All right, let's do it.

[00:55:56.91] He even left his [INAUDIBLE].

[00:55:58.29] [LAUGHTER]

[00:56:00.13] Radiology, ophthalmology, general surgery, BPD clinic to start with.

[00:56:12.62] To keep him on his toes.

[00:56:15.05] Where's Tom?

[00:56:16.62] Working.

[00:56:17.38] Working. Jeez--

[00:56:18.95] Where else would Tom be?

[00:56:19.83] --he's missing this big-- well, he'll be home to receive him.

[00:56:22.89] Yep.

[00:56:24.22] Great. Everything went smoothly, I heard, on Friday.

[00:56:27.62] Yeah, he did very well.

[00:56:28.14] No problems?

[00:56:28.62] No. No.

[00:56:30.78] Great.

[00:56:31.10] He did very well.

[00:56:31.86] Does Tom feel any more relieved now that it's over with?

[00:56:34.74] I think so. Yeah, I think so.

[00:56:37.45] I'm glad this phase is over.

[00:56:40.42] Ah, finally.

[00:56:43.72] Hopefully it's all uphill from here, huh?

[00:56:46.72] I hope so. Hope so.