Jen Lyman:
Hello and welcome to Cerebral Palsy Health. I'm your host, Jen Lyman. And on today's episode, we have orthopedic surgeons, Dr. Hank Chambers and Dr. Verina Schreiber on to talk about all the things that families need to know as they're preparing for orthopedic surgery for their child, mostly for children with complex cerebral palsy, kids who are non-ambulatory, who might be undergoing pretty complex surgeries, scoliosis surgeries, hip surgeries. And we really review all of the different things that families should be talking about with their primary care providers and coordinating in advance of the surgery so that things can go as smoothly as possible and have a successful outcome. Dr. Hank Chambers is a retired pediatric orthopedic surgeon and former director of the Southern Family Center for Cerebral Palsy at Rady Children's Hospital in San Diego. He also served as chief of staff there among many leadership roles.
He is a professor of clinical orthopedic surgery emeritus at the University of California, San Diego. He remains active in national organizations, including the American Academy of Orthopedic Surgeons, the Pediatric Orthopedic Society of North America, and the American Academy of Pediatrics. He's also the past president of the American Academy for Cerebral Palsy and Developmental Medicine. And since 2010, he's been an associate editor of developmental medicine and child neurology, and he serves on the board and on the Scientific Advisory Council for the Cerebral Palsy Foundation. Dr. Chambers has authored over 180 publications, more than 40 book chapters, and has been a visiting professor at over a hundred institutions worldwide. He's been recognized for decades among San Diego's top doctors. He's been named a best doctor in America and who's who in the world, among many other accolades. And Dr. Verina Schreiber is an associate professor with the Department of Orthopedic Surgery at Cincinnati Children's Hospital Medical Center.
She specializes in caring for children with neuromuscular disorders, including cerebral palsy, as well as those who have experienced orthopedic injuries and trauma. In her clinical role, she feels privileged to support children and their families during times when they need care, guidance, and reassurance the most. Beyond her clinical practice, she is passionate about teaching, mentoring the next generation of surgeons. She enjoys contributing to research and has published studies, written textbook chapters, and presented at a national and international meetings. She serves on committees and professional organizations such as the Pediatric Orthopedic Society of North America, the American Academy for Cerebral Palsy and Developmental Medicine, and the American Academy of Orthopedic Surgeons, working to improve education, communication, and care standards for children worldwide. Both of these experts are incredible, and I hope you find that this is a conversation that counts with experts who care.
Jen Lyman:
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics and try to shed light on how best to maximize and optimize health, participation, and quality of life for those with cerebral palsy.
Jen Lyman:
I want to welcome Verena Schreiber and Hank Chambers to Cerebral Palsy Health Today. Conversations that Count with Experts Who Care. I know these two are experts who definitely care, and I'm really excited to talk to them today about this new article that came out preparing for orthopedic surgery for a child with cerebral palsy and really related to complex cerebral palsy. And I guess first, I'd love for you guys to introduce yourselves and welcome to the show.
Verena, I don't know you as well as I know Hank. Would you mind introducing yourself, maybe tell me where you are, where you live, and why did you decide to become an orthopedic surgeon? What makes you tick?
Verena Schreiber:
Yeah, thank you for having me, number one. This is great. My name is Verena Schreiber. I'm a pediatric orthopedic surgeon at Cincinnati Children's Hospital. And my big specialty here is our neuromuscular population. And I chose this field because I do like the relationships you're building with families, with patients, and also the really multidisciplinary approach to it. None of us are an island, and I feel this is a field where collaboration is so important. The shared decision-making with parents and patients is so important. And I think that's what really attracted me to this field.
Jen Lyman:
Yeah, I can see that. I hadn't really thought about that from an orthopedic surgery perspective. I would think about it from a physiatry perspective that, yeah, you're so right. You really do get to interact with everybody there and create that web of care for everybody. Where are you from originally? You've got this accent. I'm curious.
Verena Schreiber:
I'm originally from Germany. There you go. Yes, yes. I came to the States in 2008 and after medical school and ended up doing my training in the states at the University of Pittsburgh for residency and did my fellowship at Cincinnati Children's and came back to Cincinnati last year and it was just a great opportunity.
Jen Lyman:
Wonderful.
Verena Schreiber:
Yeah, I'm back.
Jen Lyman:
Wonderful. Yeah. Well, it's a great program over there for sure. And Hank, I do know you well, but I'd love for you to tell everybody on my show who you are and what makes you tick, why you got into this field.
Hank Chambers:
Yeah, so I'm Hank Chambers. I'm actually a retired pediatric orthopedic surgeon from Rady Children's Hospital in San Diego and the University of California, San Diego. I retired last June. I got into orthopedics. I always wanted to go into orthopedics. I got injured in high school, and of course we're all a bunch of old jocks. Many of us are old jocks in orthopedics. And when I was in medical school, I was really interested in pediatrics, and I didn't even know there's such a thing as pediatric orthopedics. And when I got into orthopedics, I go, "Wow, this is perfect. This is what I want to do. " And so that was my plan. And while I was an intern, unfortunately, my son was born with cerebral palsy. And so that was probably the thing that really pushed me along. But I had some great mentors along the way.
I worked with a doctor named Dr. Kay Wilkins, who was really a big person in our field. He was one of my first mentors. And then when I did my fellowship in San Diego, I was with Dr. David Sutherland, Scott Mubarick and Dennis Winger. And David Sutherland was the father of gait analysis.
Jen Lyman:
Oh,
Hank Chambers:
Wow. Yeah. So I was able to get this great field. And then my partners knew that I was interested in cerebral palsy. So I got interested in cerebral palsy. I've been doing it now for 40 years. And I've been the president of the American Academy for Cerebral Palsy, and I'm currently a board member of the Cerebral Palsy Foundation.
Jen Lyman:
Yeah, you've been really helping us out a lot with the orthopedic standards. I think we're making a lot of progress on that front, I guess, with your leadership, and we're tremendously grateful to have you retired so that you can focus on it now, for sure. I always wonder what you do with your time. And I think we've definitely taken up quite a bit of it for sure, and we're very grateful for that. Also, just full disclosure for everybody who listens to this podcast, Hank was my son's surgeon, and we had incredible care with you, and we were very fortunate to be able to go out there and see you at action. And really, I mean, we had exceptional care. So I'll bring it up more throughout this podcast because there's definitely a few things that you went over with us, but I think about I wouldn't have known, and it's really nice that this paper is out there now.
And I guess getting back to that, y'all wrote this paper. It was for clinicians and for families. I've read it. And what I really appreciated was that I understood most of it. I only had to look up a few words, and they were all pretty easy words to remember once I looked them up. And it really made me think about all of the things that we need to consider before you have a major orthopedic surgery. And so for me, it was eye-opening. We go through this, we've had so many surgeries with my son, and I don't think we've gone through this whole checklist of things for everyone. And maybe it's done behind the scenes sometimes, but I thought it was really, really helpful to say, okay, you know what? When I'm going back to my pediatrician, I guess now we have a PCP, a general practitioner, not a pediatrician anymore, but when we go back, these are the things that we need to make sure that we're looking at before we have another major surgery.
So I guess for y'all, what made y'all decide to write this paper? I guess, Farina, how about you answer that?
Verena Schreiber:
So this paper was actually really good collaboration. So a few years ago, the Pediatric Orthopedic Society of North America had asked us to form a QSVI subcommittee on neuromuscular, which had not existed. We had it for other subspecialties. And Hank and I were on this committee, and then also our co-authors, Ben Shore, Jill Larson, Grant Hoak and Maricar Metopolis. And we had thought about what can we actually do as part of this committee to bring something out there that is on the one hand for clinicians, also for clinicians in particular who might not have all the resources available that Hank and I have at our centers, which we consider really fortunate, but also for the physician who does work with children that have special needs and they just need a little bit of a guideline. And then also, as you had mentioned, Jennifer, from a parent side, we wanted to bring something out there that's just a little bit more easier to understand.
And so that's how it was actually first born. It was the idea of, let's do something, let's start basically a serious, let's start with a preoperative evaluation. What is important? What are the things we have to look out for? And that's how this all came along.
Jen Lyman:
That's really cool. Yeah.
Hank Chambers:
Verina, could you tell us what the QSBI stands for?
Jen Lyman (00:11:34):
I was just going to ask that question.
Verena Schreiber:
So it stands for the Quality Safety and Value Initiative, which is basically part of quality improvement. And PASNA has been very big on this over the past few years. It also goes hand in hand with our PASNA Safe Surgery Program, and that's how this all came together.
Jen Lyman:
Okay. And POSNA is the Pediatric Orthopedic Surgery Association.
Verena Schreiber:
Society of North America. Yes, exactly. Exactly.
Jen Lyman:
And so when you talk to ... I guess maybe even stepping back further and looking at y'all developing this, I guess maybe even stepping back and looking at how do you even talk to families about your child needs this orthopedic surgery. This paper did seem to me to be focused more on the more complex types of patients with cerebral palsy, the GMFCS-4s and 5s that are not ambulatory and might have other complex needs. So when you're adding something to this mess of things that we have going on, and when things come up, I know in our case when we saw that Bower's hips were coming out and they needed to be fixed and straight, of course, we're freaking out and we don't know if it's something that needs to be done urgently. We don't know if it's something that we can just wait until the summer and when he's off school.
And when you guys are doing hip surveillance and when you're doing spine surveillance and these things start to come up, how do you even start to talk to families about these are things that are going to happen and help shape our expectations and also our goals. Because I know for us, having Hank do an amazing hip osteotomy for our son isn't going to mean that he's going to walk and it's going to mean that he's going to be more comfortable. It's going to mean that he's going to be able to stand in his stand or use his gait trainer maybe a little bit easier and it's definitely going to help with comfort and caregiving, but it's not a cure. It's not. So how do you all ... I know it's kind of a little bit digress from the thing, but I feel like even before you get to the process of going through the pre-evaluations and everything, you've got to make these decisions with the families.
And Hank, maybe you go first with that one.
Hank Chambers (00:14:13):
Yeah, I think the first, as you said, we mentioned, you talked about looking at surveilling the hips, making sure they stay, how they're progressing, same thing with the spine. But once we get to the point where we're making a decision for surgery, we have to make sure we're setting goals and the goals have to be realistic and they have to be consensus. So like you said, if we have a patient that has their hips coming out and the family's goal is for us to cure cerebral palsy with the surgery, that's not going to happen. But if our goal is for exactly, like you said, to sit better, to be more comfortable, to be able to do other rehab things, and then we get the goals right. And I think that's one of the first things that are important. And then once we decide that we're going to do the surgery, we have to go through what this paper's about.
What are the other things that are going on with this child? And as orthopedic surgeons, we may not know that. And we rely on the pediatrician, the primary care physician, and of course, all the specialists that the patient's already seeing, but there are also maybe a lot of specialists they haven't seen that we think are very important. And that's where our experience and why this ... I think that's one of the things this paper addresses. Did you think about the fact that they might have a hematologic, a blood problem that you didn't even know about? Yeah.
Jen Lyman:
That was actually my next question was, how did you determine what these critical elements were? So we have neuro, respiratory, GI, nutrition, skin. You have a whole list that we're going to go through, but broadly, I guess, how did y'all determine what were the things that needed to be addressed? Because I feel like there's more that could be addressed, but these seem to be the critical areas. Rena?
Verena Schreiber:
I think when we looked at everything that comes up the most, I think those were the specialties that pretty much a lot of our kids are involved with. I think we talk about GI, a lot of our children have feeding tubes, G-tubes. A lot of times we have these nutritional issues. We have children who need surgery or would benefit from hip reconstruction, but nutrition-wise are just not there yet.
Hank Chambers:
And
Verena Schreiber:
Putting them through a big hip reconstruction, which actually would be not in their best interest. And I think that all in all, we really talked about this for a long time and we thought this is really where it's at. And you are right, there are specialties that we did not include that we thought at that point might not be really the number one on the list, but we did in a paper, I put them in the miscellaneous one, not that they're miscellaneous, but we gave them a little bit of priority. And I think that's where we focus a little bit more on neurology, on respiratory GI and these bigger specialties.
Jen Lyman:
Yeah. Yeah. I was ... Go ahead.
Hank Chambers:
Yeah, I'd like to say something, Verina just brought this up about the nutrition. A lot of physicians don't know much about nutrition. Exactly. And certainly orthopedic surgeons don't know much at all. But I trained in San Antonio, Texas, and I don't want to say anything bad about that because it was a long, long time ago, but many of our patients were undernourished. They didn't have G-tubes. We only had one or two pediatric general surgeons. They didn't address the problem. And I would say 20% of our patients had femur fractures after they had surgery.
Jen Lyman:
And
Hank Chambers:
Then when I moved to San Diego, we had some very aggressive, I don't use the word, but they were in tune to their nutrition. And they treated them very making sure they had a G-tube, make sure they had the right nutrition. And I probably would see one or two a year of these. And those are kids who are really severely ... Even though they looked okay, they were malnourished. And I think that's something that we have become more aware of and not only for children with cerebral palsy, but adults. And it sometimes gets harder for the adults when their parents aren't feeding them every day. They get whatever they get.
Jen Lyman:
Yeah. I mean, I think that's sort of what happened to us recently. I mean, my son had been boarding at a school during the week and he had been losing weight and we were actually tracking it because it was freaking me out that he was losing some weight. And I had them weighing him every week. We had him in the double plate club at school is what they were calling it. And he just wasn't eating what he was eating when he was living at home with us. And my husband loves to cook more than anything, so he was making him these elaborate meals. And so we never had issues. And then we got to school and all of a sudden he started dropping weight and dropping more weight. And so he ended up having a surgery over the summer. And after that surgery came out and was having major issues and that continued through the summer.
But anyway, it ended up being because of his weight and because he had lost weight prior to that surgery and that surgery just set it over the top and then he ended up with a horrible fall as a result. So yeah, we learned the hard way and I thought it was really important that you guys address that in this paper as well. And I was looking at blood work and I didn't even realize that there was blood work that you could do to monitor malnutrition. And it seems like a pretty simple thing that somebody could do before a surgery just to make sure, or months before a surgery to make sure and then get themselves up and running.
Hank Chambers:
And the other thing goes along with nutrition is dental care. And the fact that once again, as you become adults, your parents aren't brushing your teeth and no one's taking care of you when you're an adult, and then that affects the outcomes as well.
Jen Lyman:
Yeah, for sure, for sure. Well, I guess getting back to what the expectations are, what the guidance is that you're providing in this paper, I guess first of all, you all mentioned that the pediatrician would be the person to do this or maybe a complex care physician, but not everybody's going to be at a big institution like Radio or Cincinnati. Maybe they've got a family practice physician. Is that the person? Is it a physiatrist? Who's supposed to organize this comprehensive evaluation that you guys are recommending before a big orthopedic surgery like this?
Verena Schreiber:
Maybe I can answer that because the hospital I worked for before did not have the setup that I have right now. And my partner and I were wearing all kinds of hats
Hank Chambers:
And
Verena Schreiber:
You bring up a really good point. I think that's where you are the person who is reaching out to the specialties that the ... So usually how we did it was I would know which specialties the child is already seeing and we would refer the kids to those specialties so that they're being covered. We would get them cleared months in advance to make sure that they're being seen, that they're being optimized. And then I would loop in the pediatrician as well, because obviously they're kind of the captain of the ship when it comes to that, but it was much more hands-on from an orthopedic surgeon
Hank Chambers:
Perspective
Verena Schreiber :
Versus at Cincinnati, I have a complex care clinic, I have a CP clinic, and everybody's already involved and we have a fantastic workup preoperatively where everybody knows already what these kids need and what we're looking out for. But I think that was really the thing that if you don't have that available, this shouldn't deter you from taking care of our kids if you have the right resources to make sure it's safe for them. So coming from both sides, I know how both sides work a little bit and it's doable, but I think a USD orthopedic surgeon just have to take on a little bit more responsibility.
Jen Lyman:
Yeah. I think with us, Hank, we were flying out to Rady from New Orleans to have a surgery with you. And so you're kind of an outsider from the system that we were in. So I felt like, at least with us, I know that you were doing a comprehensive evaluation there and some of the stuff we were able to do right before we got there, but I know other stuff was more placed back on me to make sure that I was talking to the doctor to organize that and make sure that we were optimizing what we needed to optimize before coming out there.
Hank Chambers:
Yeah. I think what Verina said is so important that this doesn't happen in two days. No. This is something that you have to plan months and advance. And we know that all of the surgeons, all doctors have long waiting lists. And to get in to see the pulmonologist or the neurologist or whoever you need to see really takes some planning at my hospital, my physician's assistant, Allison Dickinson, you probably
Jen Lyman (00:23:47):
Know. I know Allison, yeah.
Hank Chambers:
Yeah. So Allison is now, that's her job for our hospital. She works with the physiatrist and she works with us and the neurosurgeons and tries to get all these ... That's part of her job to do that. So it doesn't have to be the surgeon. You can have people that are ... And like Verena said, having critical care doctors are important, but they can get overwhelmed pretty quickly. If we're doing 10 surgeries a week, they can't handle 10 surgeries a week. So really, there's a lot of work put on the families, but to have somebody that can coordinate this, whether it's a nurse or a physician's assistant or somebody, I think is really a nurse practitioner, really important.
Jen Lyman:
The other thing that I thought was kind of ... So these things aren't urgent. So orthopedic surgery isn't something ... I mean, I'm thinking of a broken arm or something like that that might need to be fixed. But in our complex kids, it's not like they have to be done tomorrow. When your orthopedic surgeon says to you, "Hey, we need to do a hip derotation or we need to do a scoliosis surgery." When you're telling the families that you're giving them time, it's not like it's tomorrow that needs to be done.
Verena Schreiber:
Yeah, I think that's a big one because when we get our kids referred from rehab medicine, for instance, when I know that someone will need hip reconstruction, I always joke with the families and say, I usually don't propose surgery at the first meeting. It's like proposing marriage at the first date. It's just a big undertaking. I plant the seed and I go over everything and I said, "This is likely in the future." And then I have a quite close follow-up. So let's say instead of seeing them back in six months, I'll see families back in three months.
Hank Chambers:
So
Verena Schreiber:
That the seed was planted, they can think about it. And when we reconvene and we have gotten to known each other a little bit more and I know where this kid is from a health standpoint, it's much easier, I feel personally then to talk about a big operation at that three-month mark and it doesn't seem as overwhelming. That's just my experience. Hank, I don't know what your experience is with that because you've been doing this a little bit longer than I have, but I feel like just to get to know the families and establishing that basis of trust, I think that's a big, big thing.
Hank Chambers:
I totally agree with that. I think there are some things where someone comes out and the hip is 90% dislocated where we're going to have to move along a little quicker than this. But I think families, by that point, someone just pointed that out to them usually, but sometimes they come and don't even know their hips are dislocated or they have a huge scoliosis that no one has ever noticed before. And that brings up something that's been something that's been bothering me for years is that a lot of with the new telemedicine and people that don't know how to examine people, that we don't get the kids out of their wheelchairs, we don't do good examinations. I hate to say we, but a lot of people don't do them. And so as a parent, you should and kind of insist just because my child's in a wheelchair doesn't mean you need to examine them out of the chair and whatever that takes.
Sometimes that's hard to do, but whatever that takes. And so that's how we get a really good idea, and that really is missed on telemedicine.
Jen Lyman:
That's been a soapbox of mine. I don't know if you listen to my podcast, but I definitely have ... That exact topic has been something that has bugged me for a while because I expect somebody to ... If I go to the doctor, I expect an examination and I have to get on a table and they're giving me a full examination and I'll take Bower to the doctor and nothing. Look at him, maybe listen to his chest. And I'm thinking, what? That's not an exam. And telehealth is even worse. But yeah, I 100% agree with you and I do shout that and I hope the families that listen to this podcast are hearing you, I might-
Hank Chambers:
But also not talking to Bower, not talking to the patient. They talk to the parents, and I think that's a big mistake that we make.
Jen Lyman:
Yeah. Yeah, absolutely.
Verena Schreiber:
I have found an advantage. So the only time I really use telehealth is when I know I have a family already signed up for surgery and it is really like they come in for their six-week appointment, but then there's nothing in between. I usually offer families a telehealth visit a week before the surgery. And this is really just to go over last questions, anything that they still wanted to ask that they had maybe forgot about something where we just go over everything again in detail just to reinforce everything. And that way you don't have to bring your child to clinic because we're not changing anything at this point, but I feel like it's just to having that report again. I think I found that quite helpful and the families have been actually using this. And in addition, we have been also hosting webinars for families with our nurse practitioners.
That goes back to what Hank said. It's nice when you have a point of care person, like a PA or an NP. Our NP, Sarah Dirsing is the one who really sets that up and the families can sign up. So it's just another way of what is the expectation after surgery and doing surgery. And that helps actually quite a bit as well.
Jen Lyman:
Yeah. And that kind of brings up ... I'm sorry, Hank, go ahead.
Hank Chambers:
Well, and going back to the checklist, a lot of times the specialists aren't in your system, so they might go see a pulmonologist in another system or neurologist in another system. We may not have those notes from that doctor. So when we do a telehealth or contact the patient before surgery, we go, "Did you ever get that consult? Because I don't have that. " So that's really helpful for the families to keep track or let us know through ... Many of us have electronic medical records now, whether it's Epic with MyChart, or I don't know the other names of the other portals, but But to get back to your doctor and communicate with them, because we don't always know if you've had your MRI, if had a different system, for example.
Jen Lyman:
Right, right. And if they have care everywhere and if it's all linked up, right? Yeah. But going back to the telehealth and also thinking about preparation for after surgery and how's feeling. I was talking to a physiatrist one day who said they love telehealth because they get to see the family's house and where they live and how they live, and they can see how the kid functions in their house as well. And so thinking about when a child is coming home from surgery and how the family's going to cope and preparing them for that, I can see where a telehealth appointment a week before would be really, really helpful because you could actually look at the house and see, "Hey, wait a minute, you're going to need a Hoyer lift. There's some things that might need to be adjusted around here to help you cope when all of this is happening." I'm just kind of thinking about that now.
Hank Chambers:
But also looking at the incision after the surgery or to get a family who's post-op after a big spine surgery or hip surgery to have them get in a car- It's a lot. ... drive to the hospital and we go, "Oh, everything looks great." And just a picture, we can go, "Everything looks great. You're not having any problems." That saves hours of time for-
Jen Lyman:
Exactly.
Hank Chambers:
... and pain too, getting in there.
Jen Lyman:
Exactly. Yeah. So what are some of the things that y'all help families think about when they are thinking about after surgery and what they should have at home or what they might need to consider for after the fact when their kid comes home?
Hank Chambers:
I mean, we think that's part of the pre-op checklist is to find out what kind of equipment they would need afterwards, whether that's a reclining wheelchair after the surgery, a pillow that goes between their legs to keep the legs apart. If you have to have dressing changes, what bed pans, a bedside commode, because a lot of people can't get into their bathrooms at home. Whether a lift is something that you want to use or can use, those are very hard to get sometimes. And then if we're thinking about the whole post-op period, is setting up, make sure the therapy's set up. That's a
Jen Lyman:
Really good point.
Hank Chambers :
Therapy needs to be set up before the surgery's done, or it could take weeks to get them. And then of course, transportation. So those aren't set up ahead of time. The family, after a big surgery, it's going to be a struggle for them.
Jen Lyman:
Yeah. And with these families, I guess thinking about the therapies after the fact, but I know with adults or ourselves, we'll do things like prehab and get strong before surgeries. Do we do that or do you do that with these more complex kids and more complex patients get them pumped up and beefed up and ready for surgery?
Verena Schreiber:
I mean, the majority of our kids are already in therapy, and so usually the majority of our therapists are within the system, so they already know if a child is scheduled to have surgery and they check in with them prior to surgery as well. I don't know if they really go for a true prehab just to change it quite a bit, but I think the expectation is already there and they guide the parents too and the children what to expect afterwards when they resume rehab. And I think that's really an important point that you work with a therapist and you have that communication because they're the ones who will see the children much more often than we do because we get our check-in points, but the therapist is the lifeline because they see the kids all the time. And so I think setting the expectations in the beginning, letting the therapist know, "Hey, this is what the plan is." I think that really helps.
Jen Lyman:
Yeah.
Hank Chambers:
Yeah, I totally agree with Verina. I think the therapists are the key to this because they know the kids much better than we do. We might see them one or two times a year and they see them every week. And so they know not only the physical things, but the social, they know what's going on in the house, they know other kids. And I think they're the key to this for us to have a successful surgery. We can do the surgery. We all do surgery pretty well, but it's the therapy that can decide it if it's a successful surgery.
Jen Lyman:
Yeah. And I saw that y'all recommend a functional assessment in advance, which I'm thinking about the GMFCS and the ... Is that something that you do as the orthopedic surgeon, you're going to do the functional assessment or would the therapist do that?
Verena Schreiber:
It's the therapist where we're at.
Jen Lyman:
Okay.
Hank Chambers:
Yeah. Some of them are pretty simple. The GMFCS test is pretty simple, but others take 20 minutes to do and we don't have the time or the expertise really to do that in clinic.
Jen Lyman:
Right, right. So let's get into the checklist and the things that you guys are talking about in here as the important considerations and y'all begin with the anesthesia. And you mentioned making sure that the providers are aware of all the different needs and that the providers are all talking with each other. What are some of the top things that need to be taken into consideration when it comes to anesthesia? And I guess also thinking about parents, and I don't know if anesthesia is the right thing, but the kids might have anxiety about and be nervous about going into surgery. And I'm not sure if that's more of even more before you talk about anesthesia, but maybe anesthesia can help with that. So what are some of the top things, I guess first, thinking about the anesthesia, some of the top things that need to be considered?
And then let's talk a little bit about preparing the child.
Hank Chambers:
At our place, if we think there's going to be any problems, we consult our anesthesiologists. Our anesthesiologists are great, so I don't feel bad about them showing up. But for some kids that either have had prior problems with prior anesthesia or do have anxiety, the families, either we know them or the families tell us that, we kind of prep the anesthesiologist so they can give them something when they come in. At our hospital, if the family wants, they can take a tour of the operating room before.
Jen Lyman:
They
Hank Chambers:
Can go come in and one of the nurses will take them on a tour of the, this is the PACU, this is the intake, this is the PACU, this is where you'll be afterwards. And sometimes that may sometimes raise the anxiety, but it gives them the opportunity. We do it when there's nobody in there in the afternoon, and that's been very helpful. But for kids who might have a difficult airway, that would require some special techniques for the anesthesiologist, we would do that. And our anesthesiologists are really great. They go over the old records and make sure that they didn't have problems at the last trip, but I think they're obviously a key part of the surgery.
Jen Lyman:
Yeah. And then thinking about waking up after surgery and helping bring them back, I know that that's when we've, as a family, that's been the scariest time to me. Worried about nausea and worried about waking up and just being disoriented and scared or ... So what are some of the things that can mitigate that kind of-
Verena Schreiber:
I think from a anesthesia standpoint, our kids are all ... We have the pain service consulate for all the kids. So when you're worried about the post-op nausea and things like that, they have a pretty good protocol in what do the kids need right after surgery. So that has been working quite well to ease that. And I think just to add on to Hank too, I think the other thing is too, it's really great to have services like Child Life because I do think for a lot of kids, it really takes a lot of that anxiety, that stress away, and it's an easy thing to do, but it helps. I feel like it helps the parents too, because it's just a great way to communicate. But yeah, I think that comes back to really this multidisciplinary approach. I think everybody is trying to work together there, but I think the protocol we have in place right now works actually quite well for us.
And yeah, Hank, I'm also curious how it works for you.
Hank Chambers:
Yeah, but I think what you said about the pain management, I think that's probably the biggest anxiety for parents.
For any of us who've had surgery, am I going to wake up in pain? And so the fact that we use a lot of what are called epidural catheters with pain relief in it, we do what are called nerve blocks where we inject local anesthesia around the incision or even around this big nerves that come down to the area of surgery, and we use other medications that help with the nausea and all those things. So that is something that our pain team and our anesthesiology team work together. And once you can tell families that there's a really good chance, like 99% chance that your kid's not going to have any pain for two or three days, that takes away almost everything.
Jen Lyman:
And
Hank Chambers:
As part of anesthesia, some of the surgeries we do require blood loss and things in advance, whether you want to donate to your child or just make sure that we address the fact that it's safe to have blood products.
Jen Lyman:
And I remember you addressing that with us before that eight-hour or nine-hour surgery that you did, and that was something that we knew and we were aware of, but it was helpful to understand that. And back to the pain management, you're right, it seems like that post-op pain management is the scariest for the parents and to see your kid in pain is the worst. And especially if your child really can't communicate and when they're in pain, it's going to increase their spasticity, which is going to make all of this much worse. And I know we've had a bad experience coming out of surgery, not yours, a totally different one, one of the many. But where I remember they came out of surgery and they were placing the Baclofen pump. And this was the very first time when he was seven, and they didn't have any post-op pain management because they thought the Baclofen pump was going to do it for them.
That was it. And so that was a horrible, horrible experience. So I learned my lesson then about how to really advocate for good pain management and a plan. But I do have fears about opioids and things like that. And I don't know enough about what's used now or is it safe for the kids to have? What is safe? What is the best way to handle that?
Hank Chambers:
Yeah. So first of all, there are some people, I think Ben Shore is one of our co-authors, has his physiatrist increased the dose of the Baclofen pump prior to surgery.
Jen Lyman:
No, you had me do that prior to the surgery that you did with Bower. It worked great.
Hank Chambers:
As far as opioids, I think we've gone ... There's certainly a problem with opioids. There's no doubt that people can get addicted to them. However, in the post-op period, I think we've gone a little bit overboard saying that you shouldn't use opioids. I know one of the problems with opioids in our population with cerebral palsy is they have increased constipation, which is always a problem. And of course, we proactively treat that, make sure that they don't get stool softeners and things like that. But for the first two or three days, I have no problem with, even for the first week or so giving opioids. Our kids aren't going to get addicted because they're not going to go out and find drugs on the street or something like that. So I think we've gone too far. I know it's a huge thing in our field to have no opioids, but there are other medications that we use that are closer to high dose ... We use Tylenol, but also high dose anti-inflammatory drugs, which are good for pain relief, but they're not as good as the opioids in an immediate post-op period.
But the regional blocks that I was talking about with the nerves and also sometimes with kids with Baclofen pumps, we don't like to put epidural catheters in because of the risk. So we have to use other techniques for that.
Jen Lyman:
Yeah. Yeah. Verina, do you have anything to add?
Verena Schreiber:
No, I agree with Hank. I think we have to be conscious about it, but I think ... I mean, we are talking about really big operations and bones just hurt. And I think to really have the right combination, I think that's for really that multimodal pain regimen comes in. We're really grateful for our pain service partners because I think that this is really important. What can you do? We don't want to deprive them completely of the opioids, but we also don't want to overdo it. So I think it's a fine line, but I do agree with Hink. I think we should not say, oh, this is bad. Per se, they need some of that the first couple of days or after surgery.
Jen Lyman:
Yeah. Yeah. So the next topic that came up was neurologic or neurological and seizure control as being obviously a extremely important perioperative across the whole beginning, middle, and end of the surgical process, and making sure that families whose children have epilepsy are prepared. So what are some of the recommendations for those families that have seizures or children that have seizures?
Hank Chambers:
Well, first of all, you want to make sure that the seizures are under control. Interestingly, anesthesia lowers your seizure. So you have fewer seizures during anesthesia, but sometimes when you come out there with pain and other things that you might have more seizures.
Jen Lyman:
Interesting.
Hank Chambers:
We just want to make sure that our neurologists are aware that they're having surgery. There's one or two drugs that have increased blood loss. One of them is Depakote or valproic acid. And not that you need to particularly change the drug, you just need to be more aware that you might lose a little bit more blood afterwards, which sometimes surprises people. When I wrote that paper, I wrote a paper on that a long time ago, and it was mainly because I didn't know why these patients were losing more blood. Interesting. So we started looking at that problem. And once again, I don't change the drug, but I think just having the neurologist on board knowing that surgery's coming up is important.
Jen Lyman:
Yeah. Yeah. Verena, do you have anything else to add? From a neurological perspective, there was a lot that goes on. Obviously, we've got kids with CP, so there's more than just epilepsy to worry about.
Verena Schreiber:
No, and I think that's one thing. And also from a tone management standpoint, I think the majority of our kids are being managed by rehab medicine here. So I think it's really also important there to just make sure that rehab is on board and involved when it comes to, okay, what's going to happen surgery-wise? Do we have to change anything? As you said earlier, increasing the dose of the Baclofen pump before surgery. So I think really the communication between neuro and rehab and ortho, just to know and anesthesia and as well, obviously, to make sure that we're not having an issue. But I agree with Hink, I think we're not changing really anything significantly around before surgery, just that everybody needs to be aware. I think that's really the big thing.
Jen Lyman:
Is there ever a time when you would do a botulinum toxin or anything like that before surgery to, I don't know, just make sure that maybe if the legs are in a cast for a long time, it's not as painful or anything like that?
Verena Schreiber:
So I sometimes do actually, and I also talk to, again, rehab again because they usually want to do the Botox too. But when I'm taking a patient to the operating room, I usually talk to them prior and say like, "Hey, this is the plan. Is there anything you want me to do from a Botox standpoint?" Because we're already under anesthesia. It's much stressful for the child and the family. And usually they really have a schedule that's like they sent me a list. It's like a laundry list, I want this and this and this and this. That's perfect. If it doesn't interfere with anything surgically, I do. But yeah, we try to coordinate that. So it's really less often a stress creation for parents and for the patients. Yeah.
Hank Chambers:
Yeah. So Dr. Kerr Graham wrote a paper dozens of years ago about using botulinum toxin ahead of surgery in the adductor muscles, the muscles in your groin to decrease the pain afterwards. And I haven't done that, but there are people who suggest that. And like Verina said, I actually do my own Botox as well as our physiatrist, but often we'll do surgery of the lower extremity, but there'll be some muscles that we know are spastic and we'll inject those as well. Some things we aren't operating on, we inject those. And then we do upper extremity injections because we aren't operating on those, but it's a perfect time to do it. And it's like the easiest time when they're asleep.
Jen Lyman:
Exactly. It makes sense. But then while you were saying that, I started thinking, well, aren't you supposed to, after you've had your Botox, aren't you supposed to maybe strengthen the opposing muscles, take that opportunity to strengthen the opposing muscles. And if the kid is in a cast, how are you going to do that?
Hank Chambers:
Well, I use it because that gets rid of the opposing muscle of the surgery that I've done. There you go. For example, when I'm doing a tendon transfer, I might want to do the opposite muscles so it doesn't pull back on the surgery that I did.
Jen Lyman:
There you go. Okay. Well, what about respiratory considerations? So what are some of the conditions that should be screened and mitigated before a surgery? I think apneas and things like that were mentioned. What should parents be looking out for? Because when I was reading that part of the paper, I kind of felt like those questions I don't know have ever been asked of me. Does your child snore? Does your child have some kind of ... That's never been ... I don't know that that's been asked. What should we know? What should we know that we should be thinking about for-
Verena Schreiber:
I think that comes back again to ... Yeah, are there any respiratory issues we should be aware of? Obviously, if you have a tracheostomy, that changes our postoperative plan a little bit because we know that those children will go to the pulmonary floor and not to the ortho floor just because of a respiratory management. And then have there been issues with anesthesia before from a respiratory standpoint? Obviously, and this is something I learned again the hard way coming back from Florida to the Midwest that a lot of surgeries have to be canceled the day off because everybody gets sick. Everybody gets sick. And so that's obviously a big thing, but we didn't see that often in Florida. But I think in general, just to be aware of, is there anything that happened in the past with other surgeries that could actually lead to a prolonged intubation afterwards?
Can my child be safely extubated right after surgery? Or do we already know what? We're going to not extubate right after. We're going to give this child a day on a vent and then basically extubate safely the next day. I think that's really a big thing
That we wanted to point out with that. And even the snoring question comes in because obviously the sleep apnea can be also with something that can throw us a little bit of a curveball afterwards. So yeah.
Hank Chambers:
And also history of pneumonia, a lot of the kids with FTS5 and five have had prior pneumonias. If there's anything like that, we'd want to get at least a chest x-ray as well as evaluation by a pulmonologist. And I'll have to say in my career, I've had several pulmonologists say, "This child is not safe to have surgery ever."
Jen Lyman:
Wow.
Hank Chambers:
And then you have that conversation with the family that this is really ... Or if you do the surgery, there's a really good chance he'll have to have a tracheostomy, a tube that's put in the throat for the rest of their lives. And then you have a conversation with the family and go, "His hips may be coming out, but I don't know. That seems like a big thing in your life." So those conversations happen once or twice a year.
Jen Lyman:
I can imagine. Wow. So moving on to the GI, we've talked a little bit about GI considerations, optimizing nutrition before the surgery, making sure that nutritional status has been assessed and maybe do some of that blood work to look at that to make sure somebody's not malnourished. But I was thinking about respiratory, but what about reflux? If a child's got reflux and they're waking up after surgery, I can think that that might actually be a post-op issue that might need to be prepared for in advance. And then again, G-tubes and motility, how do you prep parents for those things? Verina, you first.
Verena Schreiber:
I think so when it comes to, especially the motility afterwards, I think that's the big thing because as we had mentioned before, we're giving opioids and they will slow you down. I think also in general, the clearance changes a little bit. I think what we have done is primarily, if someone is on feeds, we start them very slowly
Hank Chambers:
Because
Verena Schreiber :
It's really the biggest concern is that we're starting this too quickly and then someone will aspirate and get pneumonia or something like that. And that obviously would prolong the hospital course. And so I think that has worked well for us. We're not depriving our kids of food, but I think just that first day after surgery has really decreased the risk of that.
And yeah, I think that's our biggest thing, I would say, really what we do with the post-op nutrition. And I think for us, and having them, as Hank had mentioned prior, is too having them on the correct bowel regimen because it's really ... Some kids are just so sensitive to the opioids and that really might slow everything down. And then before you know it, you have that blockage in your belly and that just to overcome, then it's kind of everything backs up. So I think that's where I prefer to go a little bit slower just to make sure we're not having these issues.
Jen Lyman:
Yeah. Yeah. And is there medications or anything like that you recommend that families do? Should people start MiraLAX before a surgery to make sure that things are softened or whatever is there, but that doesn't really help with motility, that would just often things. Is there anything that you can do to increase motility after a surgery?
Hank Chambers:
Not really. I think one of the ... As far as pre-op, I do like to have them have the bowels cleared as much as possible. And that might be something like DULCALAX. I don't think many kids don't need enemas or something, but like a DULCALAX or Senecot, something to stimulate the bowel. And then the MiraLAX I think is important as well, and try to get that going ahead of time I think
Verena Schreiber:
Is important. But it's interesting too, because I think we don't ... If you look at it standardized, I don't think there's really a standardized protocol for the preoperative bowel regimen. I think everybody has a little bit on their own. And when we wrote this paper, we talked about the saying quite a bit too. It's like there's really no guidelines. What is the recommendation when it comes to preoperative bowel regimen? I think we got to look into that a little bit more.
Jen Lyman:
Yeah, I was going to say, that sounds like a ... Because I know that from the parent's perspective and a lot of the parent groups that I'm involved with, GI and motility and nutrition are topics that are constantly coming up. And I think about the post-op poop that we're always waiting for and making sure that things are moving. And if you've got motility issues to start with, the idea that it could make matters worse and it's hard. I guess the other part of it is caring for your child after surgery with CAST and with all this new stuff going on, that's also really hard. It's not easy to clean up and manage.
Hank Chambers:
Right. Yeah. The worst thing is you want to have is diarrhea in a spike case. In a
Jen Lyman:
Spike cast,
Hank Chambers:
Yes. Verena brought this up. When our committee wrote this paper, we wanted to make sure it was evidence-based, and there wasn't much evidence about what you do.
Jen Lyman:
And
Hank Chambers:
A lot of this is right now is some of my opinion and clinical experience, but no one's done the study of what you're supposed to do. So that's where we have some limits in our knowledge that maybe some of these things stimulate future research.
Jen Lyman:
I know a retired orthopedic surgeon who would be great thinking about this- To
Hank Chambers:
Look at.
Jen Lyman:
Well, what about skin considerations? Because I know this is another big one and skin breakdown and bedsores and things like that. And I feel like the hospital experience, experiencing days and days in a hospital, I do feel like that part is really well done in hospitals. They take bedsores very seriously, but your paper talks a little bit about making sure you do a pre-skin check to make sure there's not breakdown in advance. But then when the families are going home, what are some things that they should be doing on a regular basis after their child has had their surgery? Hank.
Hank Chambers:
Yeah, so regular rolling, moving your child from side to side, say they're in a body cast, a spika cast, we suggest ... We're using fewer and fewer spika cast and they used to- That's amazing.
Hank Chambers :
To do them for every child. But sometimes our decision to use a spica cast, if say the bone isn't very good quality, when we do the surgery, we go, boy, this is not going to do well without some immobilization, or we're doing some major surgery that we really want to keep it still for a couple of weeks. So we really cut down the length of the time people are in spicas. But one of the things is to make sure that they're lying on their stomach at some point. So you can look underneath that spika cast and see if there's any skin breakdown. And a lot of that comes from the diarrhea or just regular poop going up underneath there. And so those are the things that we do. And the same thing with cast that we put on for people on their heels, for example.
So if a child ... Sometimes these kids can't communicate, but if all of a sudden their spasticity's getting worse or they're kind of moan every time you touch them, that's really important for us to know because we'll change the cast. And last thing we want is to get a heel ulcer or some kind or an ulcer on the kneecap. My son, when in one of his surgeries, had a huge ulcer on the top of his kneecap
That my partners didn't notice, and he had some of those things that we just ignored. And even 30 Years later, you can see where the skin has broken down.
Jen Lyman:
Yeah. Yeah. Obviously as a parent, it's horrifying to think that he was going through that and he didn't realize that that's what was causing the issue. And so definitely thinking about ... Yeah, one of the areas that always catches me is the elbow area and thinking about how Bauer's elbows are hitting his armrest. And I'm always checking that because it doesn't seem like an area where you might get some skin breakdown. And then that's his little bony elbows is ... But with his spike cast, it was his tailbone that was always at risk, that bone just sticking right out and needing to have a little extra padding right there. I guess the last one that was on the list was vascular. And one thing I thought was interesting was that deep vein thrombosis was not a big issue in GMF CS4s and 5s because they're non-ambulatory, I guess is what y'all were saying.
Maybe I didn't understand it. Explain it to me, please.
Verena Schreiber:
Yeah, I don't think, knock on wood, I've ever had a problem with the deep vein thrombosis postoperatively. Knock on wood, now I just jinxed it, I think,
Hank Chambers:
But
Verena Schreiber:
It's just not something that we normally see. I think in the pediatric population in general, DBTs are not as high on a list as they are in adults, obviously. So it's not something that we usually come across. I think from a vascular or standpoint or a bleeding standpoint, we're all concerned sometimes about bleeding disorders that would just intraoperatively cause us more blood loss and we'd have to be a little bit more cognizant about that. But yeah, in terms of blood clots, yeah, I don't think it's really something that we regularly see.
Jen Lyman:
That's really good to
Hank Chambers:
Hear. I've had one patient, and that was a child that after we had the blood clot, we realized he had a really ... It's actually not that rare, but a condition called factor V-Leiden, which is a blood clotting, which actually is one of the causes of cerebral palsy. Interesting. Mother has factor five leiden, and then the child has ... And the reason I know that is that's how we lost one of our twins in utero because my wife has factor five leiden, which we found out 30 years later. Wow.
Hank Chambers:
A long story. Long story. But in retrospect, that's why our twin died. But the other thing though that we see is when you take a leg that's stuck like this, and you stretch it out with, you lengthen the tendons and stretch it out. The nerves that run back here get really stretched out. And then you can lose the blood supply to the foot, for example. And not only does it hurt the artery and then down there or the vein that comes back also stretches out the nerve. And so you can get numbness in the bottom of your feet, for example. So we're very careful about overstretching after a surgery.
Jen Lyman:
Oh, interesting. That's-
Hank Chambers:
And that's why families need to know if all of a sudden they look at the toes and they're white or they look at the hand and it's white after a surgery, or the child goes, "I can't feel my toes." We need to know that right away, if they can tell you that.
Jen Lyman:
Yeah, that's a really important point. And thank you for bringing that up. I think about even families after the surgery's healed and stretching their child, maybe they've got more range of motion than they did before. Is that something that they should be aware of then once they're getting back into moving and grooving?
Hank Chambers:
Yeah. I mean, usually a one-time stretch isn't going to do it, but a constant stretch in a cast can really cause a problem.
Jen Lyman:
Okay. Yeah. Well, thank you. That's really helpful to know. As far as the additional considerations, I know the urinary tract complex. I hadn't heard the word diabetes insipidus in a really long time. I saw that in there, but I know that Bowers had urinary retention after a surgery, and I don't know that we did anything about it. I think it eventually he just got back to normal, but that was definitely something that was concerning us for a little bit. Were there any other takeaways that you guys felt? I think we really didn't talk about one thing that I think is very, very important, and it's the psychiatric or psychological part of all of this for our kids and kids that can't express themselves and might have ... I mean, frankly, I know more adults with cerebral palsy who have PTSD from surgeries. I can think of two off the top of my head that call me every time they're getting ready to go have a surgery and really having a hard time.
And I just think about how we talk to our kids. And I know child life is really helpful, but the kids aren't always at the hospital. But as a pre-op plan, helping the child prepare themselves and prepare for a surgery, if you know something's going to be happening in the summertime and you're talking to your orthopedic surgeon six months in advance, and even if your kid's not a talker, they still know something's going on, you're planning for something big. And I would imagine that a lot of kids experience anxiety around this and behavioral problems and things. So I guess that would be a final question about, from your checklist, is there some things that besides child life that you would recommend families do to help their children prepare themselves for surgery? Hank?
Hank Chambers:
Well, I think it's very hard. My son has had 35 procedures, 35 surgeries. And when he was younger, at one point we realized we couldn't even tell him he was having surgery until we were in the hospital because he would just throw up and it was really bad. I mean, now that he's older, he still stresses him out, but at least we tell him. I find that's really hard. Anybody that's had surgery, any of us know that it's a stressful situation. And kids where they keep going back and back and back and back, it just kind of adds up. We have some child psychiatrists that help afterwards, but I wish we had something we could do preemptively. I don't know the answer to that. I don't know how you can do it other than what Verina said having child life and maybe, like I said, having tours of the hospital help a little bit, but I don't think there's any way you can completely eradicate that fear.
Jen Lyman:
Yeah. Yeah. I get it Verena, did you have anything else to add?
Verena Schreiber:
No, I'm with Hank on this one. I think the resources are a little bit better postoperatively, but the preparation, it's really ... I think we can do better and we need to do better. I think when you look at our population who gets fractures, there's so many videos out there like how you take a cast off and what to expect when you come to the hospital. And it kind of calms younger children, especially down a little bit. But I think for our complex kids, there's really not that much out there.
Hank Chambers:
And
Verena Schreiber:
I agree. I think that's also something we should look more into and see what can we actually offer as resources to make this easier on patients and to make it easier on parents as well, because it is a big deal, not only for the patients, but also for the parents. And I think this is something that's still an area that is not as well researched as other areas.
Jen Lyman:
Yeah. Well, again, I do know a retired orthopedic surgeon. I know a retired psychiatrist as well. I might have to go knock on his door. Yeah,
Hank Chambers:
You can talk to my wife about how much more stuff. One thing we didn't talk about, and I don't think we mentioned in our article, is the cultural aspects of surgery and just treatment from ... And also language and culture and how that affects outcomes and how we see people ahead of time. And I think we always have to keep that in the social determinants of care are really something that we're not experts in as orthopedic surgeons, but it's just something we have to be aware of that some people will respond differently to surgery. There are some people that will not trust you no matter what you are. And then other people go, "I don't even want to know, just do what you're going to do. " And I think not only is that individual, but I think there's some cultural aspects to that as well.
Jen Lyman:
I can see that for sure. Yeah. Did you guys have anything else, any key takeaways that y'all learned from creating this paper and that you feel it would be helpful for families to know as they're getting ready for a big orthopedic surgery? Verina, I'll have you go first.
Verena Schreiber:
I hope that this paper is really a little bit of a guide. I actually have to think, because this was such a labor of love and it took quite some time, I learned a lot too because it's like you get to collaborate with people like Hank, with Ben from other institutions. It's interesting for me also to see how are things being done at other institutions. And that was really the idea, we can bring this all together and then just have really a comprehensive guide for everybody. And yeah, I hope that everybody can use it a little bit.
Jen Lyman:
Yeah. Yeah. Hank, what about you?
Hank Chambers:
Well, first I want to thank Verina, who was the ringmaster of this committee, and she really pulled it all together and all the members of the committee because we all brought our different ideas and we all took time to look through the literature to see what the real answers were. And so I think there's a lot of science based on this. But I think one of the things we, as Verena said from the outset is to just let doctors who don't do this every day, surgeons that don't do this every day, and for families who of course don't do this every day, to have just something for them to look at and go, "Oh, that's right. I forgot. I didn't tell the doctor that my child had pneumonia three times in the last year."
Hank Chambers:
Yeah. "That we care about the entire body and not just the bones."
Jen Lyman:
Yeah. Thank you. I think that's a really important takeaway. And I'm looking forward to creating a checklist that families can download on CP Resource so that we can get it out there as well. I think, I mean, the paper itself is great because you could just take the paper to your doctor and be like, "Here, read this. " But I'm looking forward to having something tangible that a family can also say, "Okay, we're going to check these boxes and make sure that we're going and making sure that our child is ready and we're prepared." None of this is easy. And I know that as a recipient of your services, Hank, and I'm sure Verina, your families as well, I mean, we are so grateful. Families are so grateful to have you all on our court and on our team and caring for our kids. We know how much you care and that you guys have dedicated your lives to helping kids like ours is just tremendous.
I know I'm grateful. I do this because I'm grateful. I love it. And I love learning from you all about how you're improving the quality of life for kids with CP. And thank you. And thank you for being on the podcast. Really appreciate it.
Hank Chambers:
Thank you, Jen.
Jen Lyman:
Yeah, thank you both.
Jen Lyman:
Thanks for listening to the Cerebral Palsy Health Podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at jblyman@mac, that's M-A-C.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and/or any other medical concerns with their personal medical team