Journeys of Hope Podcast - Episode Nine

In this episode of Journeys of Hope, host Rebecca Solomon speaks with Jill Wegener, the Chief Nursing Officer at Blythedale Children's Hospital. They discuss the Parent Family Education Program (PFE), which aims to equip families of medically fragile children with the skills and knowledge needed to care for their children at home. Jill shares her experiences and insights on the challenges families face during the transition from hospital to home, the importance of tailored education, and the innovative use of simulation labs and technology in training. The conversation highlights the profound impact of hope and support in the lives of these families.

You can also listen to this episode on Apple Podcasts, Spotify, and YouTube.

Key Takeaways:

1. Parent Family Education (PFE) helps families care for their child in the Hospital and at home
2. Parents become confident caregivers through PFE
3. The journey of care is a partnership between families and healthcare providers

TRANSCRIPT

Rebecca Solomon (00:03)
Hello and welcome to Journeys of Hope, a podcast inspired by the strength, resilience, and unshakable spirit of medically fragile children.
In this episode, it's my honor to introduce you to Jill Wegener, the chief nursing officer at Blythedale Children's Hospital. Jill is a veteran in pediatric and neonatal critical care nursing, and she defines leading by example, and her staff and nursing leaders benefit so greatly from her work.
And you know who else benefits from Jill's actions and commitment to healthcare? Our families right here at Blythedale through our Parent Family Education Program, which is really a pillar
of the hospital. Jill, thank you so much for being with us on our podcast. Yeah, I know we have a lot to get into. mean, I just can't wait to hear what you have to say really about the PFE. You know a thing or two about this program. I mean, you were the mastermind behind PFE. Tell us a little bit about
Jill Wegener (00:46)
Thank you, Rebecca. Great to be here.
Rebecca Solomon (00:59)
why you wanted to bring PFE into Blythedale
Jill Wegener (01:03)
you think about, I would have to say, probably the ⁓ connection point that I have to...
the challenges families face in the home when they transition from hospital home with their medically complex child probably started back when I was a young PICU nurse and we had a mom who was taking home a very complex child with limited resources, private duty nursing resources in the community to care for him. So she enlisted some of the PICU nurses to sign on and pick up home care shifts caring for Jake. And it was an eye opener for me. Me with a PICU nurse
and years and years of experience, when I was suddenly in the home alone, without a respiratory therapist, without another nurse, without a physician to call upon, I really had to tap into my ICU skills. And I'll tell you something, at times at night, two o'clock in the morning, it's a little overwhelming when you're a party of one with nobody to consult on when there's a clinical change or deterioration in the child in front of you. So that always stuck with me. And I think as I continued on in my career,
The challenges and the lack of competent resources that parents have to care for their child in the community was a constant theme throughout my pediatric years of transitioning complex children from the hospital care-based team to the community care-based team.
Fast forward, I show up at ⁓ Blythedale and I'm here maybe a little less than a year. And we discharged home Bella, who was on our infant and toddler unit. And Bella had, transitioned her home to the home care community. She did have private duty nursing at home. And one night Bella had a medical emergency
that her private duty nurse didn't have the skill set or the competence to manage.
Bella ended up suffering a significant deterioration in her medical status because she went without oxygen for a prolonged period of time.
So here we sent home this thriving, developmentally intact little girl who had some respiratory issues, who now came back to us a neurologically devastated little girl. And Bella's story is not unique to us. As I talked to pediatric providers across the state, across the nations, the struggle that parents have nationally is finding the competence and skill set in the community care providers to manage these medically complex children.
Rebecca Solomon (03:22)
Right.
Jill Wegener (03:38)
So I back then appealed to our CEO Larry Levine and I really started planting the seeds of let one of our programs be one of our pillars of excellence is to really design a parent and family education team that trains our parents to the highest level, not only in the basic cares of their child, but managing everything from a simple task to a very complicated emergent
challenges we had learned or encountered over the years is when you leave education and training to a team of bedside nurses, everybody teaches a little bit differently. There's nobody really doing an education assessment of how do our parents learn best and tailoring the education to the family that's in front of you. So a lot of our simulation program
I wanted it to be a dedicated team of clinically proficient experts ⁓ to consistently train our parents. A team that goes in upon every admission and does an assessment of the parents and caregivers learning styles. How did they learn best? What are going to be some of the barriers to learning?
and design a educational plan that's customized for each and every family.
Rebecca Solomon (04:53)
so the fact that we now have this program available to help families and caregivers.
get on their way and move towards what the real world could look like in that healthier, safer atmosphere that's really
What would you say are some of those challenges that families face early on in this new medically fragile journey?
Jill Wegener (05:13)
So having lived my professional nursing life on both extremes, from the ICU setting to
I've seen the journey. So often our parents...
they're on the parenthood journey or a pathway and suddenly they're thrown in unexpected detail and they have, they're encountering a premature baby with medical complexities. Or maybe I had a healthy, thriving ⁓ child and suddenly a trauma or a medical condition.
severely impacted their health and their being. So often I say the ICUs are often a time of turmoil and the roller coaster of hope and stress and anxiety. And by the time they reach our doors at Blythedale, what I say is it's almost sometimes like reality hits.
But the uniqueness about Blythedale is...
help parents through those transitions.
It's partnering them with every step of the journey ⁓ from...
coming toward doors and having to learn a new care team and being overwhelmed and finally sometimes having the ability or the time to process what new journey they're on and the overwhelming outlook that sometimes that brings to them. Their lives have, I had one parent said I was traveling down the road and I took a sharp left and I was grateful I landed at Blythedale who helped me navigate that sharp left but get back on path.
I had been on, ⁓ but a new path with hope and expertise to be able to manage and care for not only their child, but their other children and kind of assimilate that into normalizing their home, their home family, their home life again.
Rebecca Solomon (06:47)
It is a new path.
How does this education program that is so unique to Blythedale, how does it give the families, including the parents and the caregivers, ⁓ those tools that they need for their
Jill Wegener (07:12)
So we've really invested in a dedicated team of clinical experts that assess every family and design a customized education plan for them, tailored to them. But it starts out, we have it in stages. So it starts out in a very low fidelity parent resource room where they start touching and manipulating some of the equipment that they're going to have to eventually use on their child in a low fidelity, low stress environment, getting them used to just
touching and ⁓ the feel and the touch and the texture of the equipment. The educators are partnering with them right here. So on low fidelity mannequins and dolls, they're practicing certain techniques. From there they graduate to our high technology, high fidelity simulation lab. Our simulation lab mirrors what they're going to see at their child's bedside. All of the same equipment that they're ⁓ encountering.
on a daily basis and the day in the life of caring for their child, they start to practice it in the sim lab. With, partnering with their educator, their education team, taking them through what starts out small, basic scenarios, and we gradually, as their competence and confidence increases, we start to elevate the level of experiential learning, simulated learning we put them through, all the way from basics cares to managing a full-blown emergency.
scenario that could happen in the home.
And then they graduate from the Sim Lab to the bedside. Again, their education team goes with them and we start doing the same thing. We simulate those basic cares, but that's not in a simulated environment anymore. Now it's actually on their child. So with the support of the education team, and all of this is reinforced with their primary bedside nurse as well. So it's really a team effort. ⁓ But the one consistent person who is really overseeing and assessing and
sometimes
reevaluating or recrafting the education plan based upon what's unfolding in front of them. And they become the masters of their...
their child's care. And it's amazing to see that journey of that nervous, kind of intimidated parent in the
to this really confident caregiver that there isn't anything I can't encounter. ⁓ Two years ago, one of the directors of nursing and I had the opportunity to participate in a fellowship, innovation fellowship through University of Pennsylvania. And this was actually our problem that we were really focusing on is this transition from hospital to home, the medically child from the
hospital care based team to the community care based team. And we interviewed parents that had been patients and families of Blythedale before we had our parent and family education program to the level that it is today with parents who have been through our parent and family education program. It was like night and day. you hear the experiences, one of our dads described it as he still has post-traumatic stress from when he transitioned home from hospital for a care team he was with for two and a half years to this home based care.
Rebecca Solomon (10:21)
Wow.
Jill Wegener (10:27)
team that was not skilled or competent or even enough of them to meet his child's needs in the community. To our now parents who say if we have an emergency at home and we call 911 it is strictly for transportation purposes. Those community providers don't know how to manage. We are the ones managing the emergency in the back of the ambulance.
They are strictly just providing us a mode of transportation to the hospital.
Rebecca Solomon (10:53)
That
is unbelievable. And in a way, through the PFE, the parent is naturally bonding with their child. They are, I don't want to use the word forced, but they really are organically bonding with their child in ways they probably never could imagine, right?
Jill Wegener (11:10)
in the hands and care of a clinically expert education team that is not only teaching them the educational content, but dealing with their fears and in lowering their anxieties and being their cheerleaders and their champions that come on, you can do this, we've got this and they add infused humor into it and it's just that personal connection that really sets up the bond for learning in a safe and
comfortable environment. think one of the other things that we've done with our PFA program is our clinical educators, it's our parents that taught us. So what we did is after our first few cases, Angela Larkin, who's been my brainchild and visionary of really elevating this program to what it is, she went into the home with our families and she said, what did we miss? What did we get right and what did we miss? And she would infuse that back into the program.
Our our parents have been our teachers along the way too. They have really helped us build and design this curriculum, this approach to parent and family education. So it's been an amazing partnership ⁓ throughout the entire
Rebecca Solomon (12:21)
we talk about the simulation
You see basically this room and there are beds there and mannequins laying on the bed. And when I first started at the hospital, I had no idea what this was.
Tell us a little bit about what the simulation lab is and really how
such a valuable tool for families.
Jill Wegener (12:36)
Yeah, so.
We use it for dual purposes. We also use it for team
So we have somebody literally, an educator, one of our educators behind a two-way mirror, a glass wall, kind of simulating various scenarios and changing it up based upon the team response or a parent's response or an intervention. So it is very high tech. We have the ability to also record scenarios and learn it, use it as
learning opportunity either for the parent or their care team. ⁓ But it can simulate everything from a seizure
cardiac arrest or respiratory arrest. So it can go from the basic to the most complicated ⁓ through technology, interacting and assessing how the team or how a parent is responding, doing a certain care or certain technique on the mannequin. And we can have the ability to
either continue
positive way or take it in as a more deterioration and then the team or the parent has to kind of redirect their efforts. ⁓ Yeah, it's an amazing place to simulate learning in a safe place. Sometimes you'll be walking by there and Dean, our respiratory educator, you'll hear bells and whistles with the ventilator going off and but along with it there's lots of laughter and he's making it a ⁓ you know, a simulated emergent experience but he's infusing some humor in it again to decrease
parents' anxiety so they can get into that learning space.
Rebecca Solomon (14:03)
as it should
be because this is the parent's new normal, right? Caring for their child, it's like any parent caring for a child, it just looks a little different. And you're giving them what they need to be prepared for that.
Jill Wegener (14:15)
It's interesting, I had a parent that once said to me, Jill, normal is a cycle on a washing machine. And that sticks with me because nothing about our PFE program is normal. What I love about it is everything is customized to the parent and the family and the child that is in front of you. There is no normal. ⁓ Every family brings its own.
strengths its own weaknesses and together our clinical education team partnering with them ⁓ figures out a training platform and pathway that for them is going to be successful. ⁓
Rebecca Solomon (14:54)
I'm
sure there's that technological aspect to it all as well. mean, especially in today's day and age, we have to turn to technology. Tell us a little bit how we're marrying technology to support the parent education and basic learning.
Jill Wegener (15:09)
So what we've done, what I like to say is we've married
we have a plethora here at Blythedale Children's Hospital is the clinical expertise. So we have married clinical expertise with high fidelity technology to create the perfect learning ⁓ environment for our families. And when you think about technology, so we have certain devices and technologies that we use in the hospital. What we don't have any control over is the technologies that the
medical equipment companies are going to push into these parents homes. That was another barrier we had. We learned very early on about transition. So what we actually did is we designed a home simulation lab. So it's, and again, this, we got this feedback from Angela going out and partnering with our parents and we designed a home, we mocked up a home based simulation lab, which incorporates the equipment they're going to see at the home, not in the hospital. So we have to start training them just before discharge now.
and a whole other layer of equipment before they get in the home. So our home environment, Angela and her team have mocked up to simulate how do you set up your bedroom, the child's bedroom at home for success. Because it's not only just the technical medical skills we teach them, they become, as I always say, they're CEO now of their home. They are financially responsible for often scheduling private duty nurses, ordering supplies and equipment, managing complicated medical appointments.
Sometimes they're dealing with four or five different pharmacies. So what we do in our home lab is teach them that final step as to how do you organize all the aspects of care, right down to designing how to set up your room and how to outlay ⁓ where your supplies and your emergency equipment that you need accessible at all times. So Angela has mocked up a room that can help organize parents with everything that they need immediately at their fingertips.
large calendars for organizing a day in the life of their complex ⁓ multifaceted child. So we have really taken technology and married it with our clinical expertise and our feedback from our families to design a really comprehensive program that at
end is producing really competent and confident families to manage all aspects of care of their child before they transition home.
Rebecca Solomon (17:37)
Well, then I think I know the answer to our next question because we have talked so much about this PFE and it's just so unbelievable how we're helping out our families and whether a patient is in Blythedale for a couple of weeks or several months, ultimately the goal is to get them home. And when a patient is gearing up for discharge,
What's going through their minds and how do parents brace for this big change of returning back home now knowing that they've been through PFE and maybe it's going to be okay.
Jill Wegener (18:10)
from grandparents to parents is really that competence. They're going home and they're teaching and training the private duty nurses that are coming into their communities.
another transition point which we would love to develop is partnerships. So what we've often heard from our parents is, sometimes when I got home,
Some of my friends and my old colleagues and ⁓ neighbors couldn't really appreciate all we were going through, what a day in our life was. So we'd love to create a mentorship program where parents, maybe I'm three years out and connect them with a new parent who's discharged home for the first time. So when it's two o'clock in the morning and you have a question or you're scared or something pops up, who's your mentor? Who's your phone or friend to call? Somebody who's walked in your shoes and traveled this journey before. We'd love to be able to set up
through our simulation lab you would ask about technology,
have the ability to record scenarios. So I would love to develop a learning library so we can film some of the educational or hands-on scenarios that we're teaching our parents and develop a library. So if I'm a private-duty nurse and I'm new to the case, where are my resources where I can say, I have to change the central line dressing tonight. I've never done that before. 
But I know that the feedback that we have gotten from our parents, as I said, the ones I interviewed pre-parent and family education and those had gone through it, it's night and day. Just the competence, ⁓ the readiness for discharge. ⁓
It's it's overwhelmingly evident in our families who have worked with Angela and her team ⁓ to get home.
Rebecca Solomon (20:02)
Beautiful. And my last question for you is a question that I'd like to ask all of our guests on our Journeys of Hope podcast. In a Blythedale family's journey, how would you describe the meaning of hope?
Jill Wegener (20:19)
⁓ Hope is endless here. ⁓ The walls are full of it. I think what, and if you were to watch any of our videos that we have on our our home site
sometimes the devastation, the medical ⁓ limitations that a child comes through our doors with. And when you see them months later, a year later, and they're walking out our door, they're talking, they've achieved amazing,
amazing outcomes. There's an intensity and expertise, just a positive passion here. This is all we do. This is all we do every single day is take really medically compromised or medically complex children and we walk them through this journey of hope, but it's not only hope.
It's a journey where we really are obtaining really positive outcomes. It's an open environment here. I always say When a When a child walks through our doors,
They're not looked at as a child with disabilities, but a child with possibilities. that That mantra, that outlook is consistent in every member of our care team. I always say we're all a piece of the puzzle. No one piece is any more important from the therapist to the nursing to the nursing assistant to our security officers to our environmental service workers. We're all part of that team and each of us makes an impact and an imprint on our families. But our families also make an impact
and
imprint and boost each other. So we have a very open environment. Our kids go to rec, our kids are in the pods and in the hallways, they go to school. When they walk through our doors, it's not just the medical plan of care. We're looking at your social plan of care, your development plan of care, your educational plan of care, as well as your medical and your educational ⁓ learning plan of care. So it's just an opportunity a child and family is looked at as a whole here. ⁓
and amazing outcomes happen here every single
⁓
Rebecca Solomon (22:31)
Really, the possibilities are endless for our children. Thank
you so much, Jill. I really love this conversation. We're so lucky to have you. And thank you for all you've done in health care, especially at Blythedale. We're so appreciative. And gosh, with everything that you've accomplished and your team has accomplished so far, can you imagine what the future holds? We're not done.
Jill Wegener (22:54)
Yeah, we're not done. We're not done.
We're always going to say we're going to continue to push the envelope. We're going to continue to advocate for our patients and families to make that community setting ⁓ more able to care and meet their needs. So we are we're championing this ⁓ this initiative. But thank you. It's been it's been an amazing journey here. It really has.
Rebecca Solomon (23:17)
wonderful.
Jill Wegener (23:17)
39
years as a pediatric nurse, always say this is my final and best chapter.
Rebecca Solomon (23:24)
We're
all happy to be a part of that ride with you. So thank you, Jill, so much.
want to know if you have any ideas for future topics. We would love to hear from you. If you want to send us an email, that would be great. Our email is podcast at blythedale.org. Thank you so much, and we hope to see you next time.