A time to be thankful for our life gifts

Did you know I’ve been a member of the same church for the last 46 years? At the Palm Sunday service, Mother Karin said something in her sermon that really struck me. She was referring to how angry all of the disciples were when they thought that Jesus was coming in to take control and push out all of those who hadn’t believed.

If you’re familiar with the story, that wasn't what He had in mind. Instead, He was going to “control” by demonstrating compassion and love, not by punishment.

Now, over a lifetime of Palm Sunday sermons I am not sure why this one struck me the way it did but that is the gift of sermons, they hit you when you least expect it.

This made me think of the work we do with our children and families. Our journey with them, whether it is following an injury or a diagnosis, is not about us as practitioners taking control of the situation, but by beginning the steps on the journey to help their child reach their maximum potential.

Frankly, that is the real difference between what we do compared to our acute care colleagues who specialize in surgical and interventional techniques.

The work that is done at our hospital day after day, sometimes year after year, is not easy. It isn’t about the quick hit or short win. It is about taking the time to attempt many techniques and skills to try and assist the child (and the family) in all sorts of ways.

It is about having the courage to walk alongside them, to support them and know that you will be with them for the journey. 

There are times we may have to face unsurmountable odds and sometimes pain, when the only thing we have to hold on to is hope – hope that with love, compassion, and in our case skilled clinicians, we will help that child reach their full potential. To know that you are never alone, and are truly loved.

In my case, my mistakes have been many and the only comfort that I have is to know that every day I start with my heart filled with positivity and try to do my best. I start my day with the comfort that I will be forgiven if I approach every experience as the servant and not with the goal of being in charge.

We are all on a journey—with the children and families we care for, as well as with each other.

This holiday it is my hope that you see the gifts you have and share them; knowing there will be more given to those who offer their gifts to others.

I’m a creature of routine – just ask my hairdresser

My mother has a love-hate relationship with her hairdressers. She loves to get her hair done, but sooner or later – usually within 2 years – she is unhappy with the work they do and then she is off to find another salon and another hairstylist.

                               

It’s not like she looks through the phonebook and goes through the list of salons in her area. She gets recommendations from everywhere she goes. While at church this past summer she saw someone in the congregation whose haircut she liked. So, she actually went up to the woman to ask her the name of the salon and hairstylist she went to.

I started going to my hairstylist, Lori at Salon Cusato in Hamilton, in 1990. I was married then, she was fresh out of cosmetology school, and we just really hit it off. I have followed her to four different salons since she started her career, and we sure have been through a lot together!

We have shared perms (which she told me not to do, but I insisted), long hair, short hair, my divorce, the loss of her Dad, her marriage, and birth of her son. You can see a few of my hair styles over the years in my “Celebrating My Anniversary” post from back in September. Lori is certainly someone I can rely on and has come to be a part of my rituals.

Rituals. That’s a funny term isn't it? A ritual is defined by Merriam Webster as “always done in a particular situation and in the same way each time.”

When I think about going to the same hairdresser for 25 years as a ritual, I wonder if I am so OCD that I have the same rituals for other things and can’t break out of them.

None of my friends would ever call me spontaneous – I definitely am a planner and like routine. When I was married to a police officer it used to make him crazy that I would do the same things each and every day at the same time. For example, during the week I would run the same route every morning. I think he thought it was boring.

Similarly, I go to the gym at the same time every day, use the same dry cleaner, I visit Bennie the shoe guy almost weekly, I bring in bagels for our Senior Leadership meeting every Wednesday from the same bagel shop, and my parents and I sit in the same seats every week at the same church service we have been attending for over 45 years.

There is so much of my work day and life in general that I have no control over. These routines that I have help me keep structure, and my sanity, in my busy world. They are the few things that I can actually control.

Do you have a routine that you follow consistently? Or do you like to experiment and try spice it up? I’d love to hear your thoughts in the comments below!

Never burn bridges, and other life lessons

I have been a member of the State Chamber of Commerce for the last nine years. In May of 2016, I will be assuming the Chair of the State Chamber – the first person ever from a non-profit organization and the second woman to serve. Deep breath. 

Every year the organization rents an Amtrak train, yes an entire train, where business leaders and elected officials travel to Washington, DC together and then attend a huge dinner.  It’s kind of a to-do in New Jersey politics and business leaders. 

Myself with Governor Chris Christie

The entire function is a chance for me to get face time with elected officials and for business people a chance to network. There are usually about 1,000 people at the dinner and at least 700 people on the train.

Beth Anne Dobosh (Dir. of Corporate Foundation Relations, Foundation) joined me this year for her first trip. I am very proud (and impressed) of her for walking all 13 cars of the train to introduce herself and talk about the amazing work we do at Children’s Specialized Hospital and the Foundation. As I made my way through the train, everyone kept saying to me “I just met your colleague.” It was great that she was working so hard to make the most out of the trip.

One funny thing Beth Anne said to me was, “I had no idea that so many people outside of your Children’s Specialized world feel the same way we do about you.” It is funny right – you are only seen in the world that people know or knew you.

The people you grow up with from a young child will always see you as that kid or teenager. The people you worked with early in your career still see you as a young staffer.

I always say that since I worked for Governor James Florio at the age of 20, he stills see me as the 20-year-old who worked for him in Washington, DC.

You may no longer be at those points in your life, but it is your entire life that brings you to where you are today – good, bad, or indifferent. Who you are today is a compilation of your experiences. They may not define you, but you will continue to take lessons from every experience you’ve had and change ever so slightly.

On the train trip I did a TV interview. Steve Adubato asked me about the lessons I learned throughout my career. 

Myself and Steve Adubato on the train.

I told him, “Never burn a bridge – you never know when your path will cross that individual again.” And it’s true; you just never know when you will need to have that relationship.

So what about you – are there lessons you learned from you work experience at Children’s Specialized or other places that you worked that you bring with you?

When you love what you do, it’s not just a job

When someone asks you “Why do you enjoy going to work at Children’s Specialized Hospital every day,” how would you answer? Just think about it for a minute.

I wanted to share this story with you guys to share an example from Gina Freeman about why she enjoys working at Children’s Specialized. 

Gina Freeman (Occupational Therapy Supervisor, Toms River 94 Stevens Rd) recently shared with me that her team had an outstanding in-service training on ribcage breath support, positioning for feeding, and oral motor facilitation for feeding. The training was informative, and well received by the team, but it was even more special due what was going on in the environment DURING this training.

They were able to prepare the in-service training in the midst of very busy schedules and the UltiPro roll out!

Trish West-Low (Physical Therapy, Toms River 94 Stevens), Jen Kus (Speech, Toms River 94 Stevens), Cara Melmid (Speech, Toms River 94 Stevens), Megan Lafontaine (Occupational Therapy, Toms River 94 Stevens), Dalthea Beavers (Physical Therapy, Toms River 94 Stevens), and Melissa Smith (Speech Clinical Lead, New Brunswick) presented a patient demonstration and clinical discussion that was useful across all disciplines and programs. 

Then they were lucky enough to have the clinical leads present for the in-service and continued the discussion. Problem solving and brainstorming continued for the rest of the afternoon in the gym and in the staff office.

This example is exactly what comes to my mind when I think about what makes working at Children’s Specialized so special. When colleagues can get together and share their knowledge, help one another, and improve the great work they do it’s a true testament to wanting each other to succeed and wanting to provide the best care for our children.

Why do I love coming to work every day at Children’s Specialized?

For me there isn't just one thing I love about Children's Specialized – it is about how all the parts work together.

Your selfless dedication to the children we care for, their families, as well as to each other. When the chips are down, you all have stepped up – whether it is giving your free time, sacrificing your TOP days, donating to the crisis fund, or simply showing love. There is no end to how you extend yourselves.

Also, the kids. You know I didn't get to have children of my own, but the children whose lives I have been able to come in contact with have deep meaning in my heart. I appreciate I feel vulnerable enough to cry with a family when that is what is needed and strong enough to be their rock when the situation requires.

All of these things we get to do each and every day. It is a pretty special place that lets that all happen each and every day.

Now tell me in the comments, Why do YOU enjoy coming to work at Children’s Specialized every day?

Inpatient Pain Program – helping kids live a life without pain

Our Inpatient Pain Program treats children without traumatic injuries or without a formal diagnosis who are experiencing chronic, excruciating pain.

At first I was confused. I just couldn’t understand how a child could experience such debilitating pain without having some sort of injury or disability.

Our Pain Management Program is a specialized inpatient program for children and adolescents, 9-21 years of age, afflicted by Reflex Neurovascular Dystrophy (RND). RND is a very painful condition. It usually affects the limb (a foot or leg more commonly than a hand or arm), but can cause pain anywhere on the body.

Some children have pain all over while a few have intermittent attacks of pain. The pain these children experience, however, is much more intense than one would normally expect because the pain signal is amplified.

RND is also known as reflex sympathetic dystrophy (RSD), amplified musculoskeletal pain syndrome (AMPS), childhood fibromyalgia, and complex regional pain syndrome (CRPS). Diagnosing RND can be difficult because while many children do not have any underlying illness to explain the pain, many of the symptoms are physical in nature.

Over the last two years I have seen kids who can barely walk, have trouble getting into or get out of bed enter our hospital. After their stay with us and intense therapy they are fully functioning, but more importantly they are confident that they can tackle their pain.

As with so many of our programs, it is the combination of teamwork that brings the greatest success. While the physical therapists are leading much of the efforts in the Inpatient Pain Program, the combination of the multi-disciplinary team is critical in the success of these children. In addition, we thank Dr. Katherine Bentley for her leadership, the AMAZING team of therapists who give so much to these children, and the Inpatient Admissions Team for identifying children in need of this service.

What’s even more exciting is these kids are coming from all over the country to be part of this program because they are looking for relief and hope and their families are confident that we can provide for them better than any other children’s hospital. 

Last month, when one of our inpatients was discharged, her Mom told me that she never could have imagined that her daughter would experience joy and freedom from the burden of the pain she was experiencing. That is truly life altering.

We will continue to reach outside of “typical” rehabilitation to meet the needs of the children who need us and it will continue to be an honor to do so.

Confession: I’m obsessed with tracking my steps

You may have already heard that I am hooked on my Fitbit – an activity tracker that you wear to track your steps, count your calories, and even help you see how well you sleep.

I’m VERY serious about making sure I hit my goal in steps each day. I park farther away from the front door of wherever I’m headed and take the stairs whenever possible.

If I haven’t completed my goal of 12,500 (you can set your goal to whatever you want) at the end of the night, I stand by my bed and march in place to get the steps in. See? I told you I’m serious about it! Some might say obsessed… but it’s for a good reason. 

Since I have got my Fitbit in March, there have only been 5 days that I missed my goal. The Fitbit is such an easy way to say “wait, this is important for me to do.” Plus, it’s fun to watch the step counter go up as you climb to your goal!

I don’t think my goal of 12,500 steps is going to change the course of my life but it is one thing that I do each and every day that is just for me. No one else cares whether I do it or not, but to me it is the time I carve out for myself and because of that it’s important to me. Plus, I feel a sense of accomplishment as soon as I reach that goal!

There are times when I can’t make it to the gym because of my schedule or the snow has sucked the life out of me and I just can’t slug through. I’m sure I’m not the only one feeling the effects of the weather! But I always have my trusty Fitbit on my wrist saying “Don’t forget me; you’re so close to your goal!”

Is there something you do each day to take care of yourself? Maybe meditation, a walk around the block – something that is just for you, and while it might not change the course of your life, you still do it because it matters just to you?

The pros and cons of disruptive innovation

A lot of the healthcare trade journals have been printing stories about innovation. You have probably heard me say that I am truly concerned that disruptive innovation – something that will change how we use the healthcare system – will come from outside of the healthcare market place.

Just an example, the iPhone we know today evolved from the work of 3 guys in their garage – not at IBM or Hewlett Packard. Those companies will never hold the place they did in the marketplace before the disruption simply because they were not ahead of the curve – they will always be playing catch up. 

That is my worry for our hospital and for hospitals in general. We are a trusted place for families – a facility they come to filled with people they rely on. If technology evolves to a point where it can provide the same care they came to us for, how can we ensure that we can continue to be of value to our families?

I noticed something at the bank when I went to the ATM. I now have the option to “save” my most common transaction on the main screen when I log into the system so I don’t have to re-enter it every time. In addition, they give me my card back before they give my money because people were leaving their cards in the ATMs and causing a lot of risk, rework, and havoc.

These two small steps save me and the bank’s employees’ time and energy, and honestly I greatly appreciate the change!

Now does it make me stay with this bank versus another? Probably not, but I do appreciate the fact that I can see they are thinking about how to improve the customer experience.

The Tablet Registration, the Patient Portal, and taking steps to allow families to schedule their appointments online are all examples of how we are doing this for our families. They are all ways to ease how patients and families interact with us and ensure that if we aren't the place that develops this disruptive technology, we are actively working with our them to improve their experience as well as provide great care for their children.

I still believe the best place for the disruption to come from is from you. You on the front lines see and hear everything. Throw those ideas out there and you never know what may happen!