Thursday, April 6, 2017

Everyone Should Live a Life Based on a Palliative Care Model

I had the pleasure and honor of attending the California Coalition for Compassionate Care conference on Palliative Care on March 13 through the 15, 2017. It was an amazing conference.

What is Palliative Care? Well it's called living life. Living life the way you want with what is important to you. It's mostly used in situations that involve terminal illness, or chronic illness, but honestly......


Palliative Care = Quality of Life Care

Palliative Care asks questions like -

"What brings you the joys in life?"
"What is important to you to feel fulfilled in life?"

Palliative Care is about life. Palliative Care knows that regardless of illness, life continues to be a multi-dimensional experience. Palliative Care is transdisciplinary. It encompasses, well, it encompasses life.

We don't like to talk about palliative care in pediatrics cause well, for some reason we all think palliative care means someone is dying - well guess what - WE ARE ALL DYING. Every single day, every single minute - some of us are just doing it faster than others.

Thanks to this conference my focus in advocacy for this year is going to be an expansion of Palliative Care practices happening in pediatric medically complex patients AND their families.

I can't help but think if I had the opportunity to get the level of care provided by a palliative care model many things in the care of Alexandra would have been much more streamlined and so much more enjoyable. Heterotaxy wouldn't have defined her, it would just be a condition she has.

Will you join me on this journey? This journey will be about life. Not about sickness or death. It will be about living life the best way we all can, and finding joy in each and every day despite the failings of health.

Palliative care is hollistic and spiritual.

For a long time I wondered where my place was in patient advocacy - and now I have found it.

I belong in the arena advocating for hollistic, complete care for medically complex children. Because palliative care will give these children the best quality of life available. If we aren't going to have the QUANTITY OF LIFE in a patient, let's have the QUALITY OF LIFE in a patient.

Will you join me?

Friday, February 24, 2017


I am not who I used to be.

I wonder if you notice. I don't think you do.

A part of me is forever gone, it will not come back. I have spent the better part of a decade attempting to find it again - it no longer exists.

I don't really know how we got here. The memories only exist like flashes of lightning - coming on quickly and leaving with the sound of thunder.

See I think I was trying to find out who I was when I met you. And it was fate.

And without you I couldn't be who I now am. Because this is who I was always meant to be.

Now we are two people who are on different roads. Every now and then the roads come to an intersection, and we wave and say hello.

Pieces of me have to stay locked away. I know I am not an innocent party in all of this. I am just as much to blame as anyone.

I wear an armor of humor, an armor of laughter.

I have drifted far away. I can't help it. The flesh that I bore is broken, and so I am broken.

No matter of time or love or anything will put that brokeness back together. It is something I just have to live with.

But your presence is like a strain on any hope of joy I have - for you are part of the broken - because you are broken too.

This house is broken. I can now only manage a few of the pieces of it that sometimes cut me as I try.

We have lived in a semi-conscious state of mutual survival for a decade now. I am tired. You are tired.

The damage is done.

Friday, February 10, 2017

Our Story of CHD and Heterotaxy

I remember the day very clearly. The day I heard "abnormal looking heart".

I was driving to work. My flip phone rang. (Flip Phones!!)

I clearly remember sitting at the light on Alma School Rd, where I would always turn left to drive into Fiesta Mall on my way to work every morning. It was just another day with the shiny diamonds. I was pregnant and happy. We had just found out it was a girl.

"Mrs. Edges - We need to schedule you for a level 2 ultrasound."

"Uh....what's a level 2 ultrasound?"

"Well the baby has an abnormal looking heart, so we need to get better quality pictures."

"What in the hell does that mean?"

I really have never stopped saying "What in the hell?" and we are into this a decade now.

They scheduled me for the level 2 about 3 weeks later. I had no clue what a "high risk OB" was then.

Kevin had to work, so my Dad graciously came with me for the level 2. I layed on that table for 3 hours. 3 hours of doctor after doctor coming into the room with a different tech. Obviously something was majorly wrong. All I got from that appointment was "The heart is severely malformed. We will get you into a pediatric cardiologist."

I had no clue what in the hell heart defects were. I had a nephew with a heart murmur, but it was no big deal.

Once my Dad and I left the doctors office, we called everyone. He called my Mom, and I called Kevin. We went back to Kevin and I's apartment and I cried. My Dad cried. My Mom showed up and soon after Kevin did.

I asked Kevin "Why are you home?"

His response "Something is wrong with my girl. Something is wrong with our baby."

We had already decided on her name - Alexandra Mae Edges. My Mom wrote her full name on a half a piece of paper and below wrote "We all love you." and put it on our refrigerator. I remember praying over that piece of paper every day.

On May 1, 2007 we finally saw the pediatric cardiologist. He gave us her full diagnosis of Heterotaxy, Single Ventricle with Common Atrium, Transposition of the Great Arteries, Pulmonary Stenosis, Interrupted IVC, and nearly discontinuous pulmonary arteries. She would need a series of 3 heart surgeries. The mortality rate for her condition was 80% in the first year of life.

A week later we met with the cardiothoracic surgeon. His words exactly "This is going to be hard. She will have a very difficult time. This will change your life completely. She may die. But if you want to do this, I promise you I will do everything in my power to help save her life."

"Dr. Pearl if you told me she would die the moment she came out of me, I would still give birth to her She is my daughter. I will do whatever I have to."

Fast forward a decade, and she has been through 5 heart surgeries rather than 3. She needs a combined heart/liver transplant, but has been denied 3 times for it. We travel out of state now for her care. She has developed severe scoliosis and lives most days in pain. Yet she smiles. She thrives. She is in 4th grade. She hobbles when she walks but she does it with such gusto. She has a tube in her stomach to help her get enough calories to have a good quality of life.

This morning she asked me if I wanted her.

"Alexandra I would do this billions of times over and over again to have you. I didn't lose when I became a Mother to you, I gained the most important lesson I will ever learn. You gave me the perspective I always needed to have. You brought me to where I was meant to be. An educator, an advocate - but more than anything you made me a Mommy."

Alexandra Mae Edges I will go to the ends of the Earth for you. You never have to doubt my love for you. As long as there is breath in my lungs I will fight for you and for children and adults like you everywhere.

Friday, January 27, 2017

Untitled Emotion and Exhaustion

I found myself crouched in the corner of the room. Tears were streaming from my face.

I wasn't exactly sure how I had got to the corner. I just remember this wash of panic, and then I came to in the corner.

My head hurt. I was probably having a cluster. A cluster accompanied by a panic attack of massive proportions.

I am tired. Tired to the marrow in my bones.

My feet burn. My fingers crack and ache.

I didn't really want to stand up when I came to. I thought to myself, "No, just stay here."

It was so strange because I felt like I was outside of my body when I found myself. Like I was watching myself sit there in agony.

I had been having visions, or fears/dreams, or whatever you wanna call them. Maybe I'm just hallucinating.

I would go to her bed to wake her for school and she would be cold. Her body cold. Unresponsive.

She was gone. And therefore I was. We were both gone.

I am tired of making life and death decisions. I am tired of the weight of the world.

I want to be her Mom. Not her Doctor. Or Nurse.

I want to be Mom.

I feel a storm coming. A storm inside of my heart.

I am awash with intense emotion.

I have never been so driven to decision, yet so unable to make decisions.

The tears that were flowing from my eyes while locked in panic are the rain of the storm that approaches.

I fear she will leave me. She will leave me with the medicine. All this knowledge and then I will not have any reason to use it anymore. I will be left without a purpose.

In these spaces alone, I feel the loss of my purpose. Almost like she is out of my reach. Like there is nothing more to do. We just have to "ride it out".

I grieve for the loss, even before the loss occurs. I have been grieving it for almost a decade now.

It ebbs and flows. It sits quietly inside me, or rages in my words or tears.

Is this what life is? Is this truly living?

Feeling the emotions when they come and watching as they dissipate, scattered to the Universe.

She gave me purpose. Without her, I am nothing. She has made me everything I am.

She made me a Mother. She made me a Doctor, a Nurse. An Educator. An Advocate.

I still see myself in the corner. Trapped in panic.

That woman in the corner is me. Is this a vision of my future? Is this just the result of the electrical signals in my brain reacting to neurochemicals?

Am I anything? Is this real?

I am questioning it all. My mind is not telling truths anymore.

I am tired.

Thursday, December 29, 2016

Why Healthcare Needs to Take Advice From Business Customer Service

Ok - we all know I am not paid to work in the healthcare setting. (Someone gimme a job - I would be fantastic - hehe)

I am not a clinician, or tech, or even a receptionist in any sort of healthcare setting.

But what am I? I am the parent/caregiver of a medically complex child as well as a patient myself.

Oh and I've also spent 18 years in the world of sales.

High pressure sales with lots of goals ranging from sales to warranties to additional items on a sale.

I am pretty much an expert in the idea of customer service. SO - let me get something off my chest.....


Now I'm not trying to demean anyone or compare what I give to my customers for their hard earned money to what you as members of the society of people who work in healthcare give to their patients - wellness and health are far greater in worth than the shiny rocks I sell everyday.

But I think I could help you with your attitude towards customer service and help you in the process achieve better outcomes for your patients as well as your employees.

See you may call us patients but really we are your customers. We are using our hard earned money to receive healthcare expertise from you. So a smile when I sign in for my daughter's lab draw would probably help ease her tension at the thought of getting poked with a needle - even though she's a rockstar at it.

Your ignoring the waiting room while sitting behind the reception desk does not make your patients feel respected and looked after. When you ignore the comings and goings of the people who are walking in and out of your waiting rooms you are potentially losing customers. Your ignorance of them and unwillingness to acknowledge them may make them want to go someplace else to get services from.

Now you make think "Oh no no, healthcare is different than selling diamonds."

Um no it is not. You are providing a service that I am paying for. Just like I provide sparkly shiny diamonds for large sums of money - which you also choose to charge large sums of money for a few aspirins and a bandaid.

When one of your receptionists knows that a customer - whoops, wait I mean patient - has signed in, as you told them to, still has not been registered or called for the service they are paying for and it's been an hour.....well I can tell you what would've happened if that happened where I work....the customer would walk down the hall to XYZ Jewelers and bought there. We probably also would have received a nasty review on Yelp....

But you all think you're above that. You're not. My time is just as valuable as yours. A 60 second lab draw should not take an hour and a half when the waiting room was about empty and you have two phlebotomy techs.

You think you have no competition. You do. You may not have any competition right in your backyard like I do, but you've got it - and they exist all around you.

People are choosing to go out of state for big procedures - you know the ones that really pay you all's bills - and that's going to affect you. It's kinda like the worry we had over a big time bridal jeweler who moved into the Metro area - we worried all our "big sales" would go to them. But they didn't. Why? Because we chose the route of customer service.

We chose to be knowledgeable, caring and vigilant with our customers needs. But see we didn't just do that for our "full time" sales staff. We did it for everyone - from the top down to the little old lady who works seasonally for us for the employee discount.

Healthcare peeps - you've gotta do that too. You cannot have amazing doctors and really crappy mean faced receptionists who are completely unaware of the people sitting in front of them.

At my job we call this "training". See we train people to sell, we train people to always see the "person" in front of them. And hell all we are doing is selling rocks that actually have no real value - what you all do is where the real value is - and your receptionists can't smile or acknowledge that a patient has been sitting in their waiting room for WAY LONGER than it should be for a lab draw. Even as that receptionist sits staring at the waiting room.

Don't even get me started on the fact that you are a pediatric healthcare facility.....



By the way....I am looking for a job. :) I'm happy to be a paid consultant.....

Monday, December 12, 2016

Prozac, Vacations and Jealousy

We don't go on trips, vacations.

We don't go to Disneyland, we don't go to the Polar Express for Christmas, or take any trip for any sort of "fun" that lasts any longer than a day or two.

Well trips to spend a week in and out of a hospital. We disguise it with a few little jaunts to fun things around the city we are in - but the truth is - we are only there to see the doctors in that hospital.

This is our life.

And sometimes I get very jealous. Very jealous.

We put Aria on Prozac - because the intense anxiety and bouts of depression were just too much for an 8 year old to continue to go through. Also we knew that if we continued to allow it to go on it would spiral upwards as she approached her teenage years.

And well, let me be honest here - I decided to put her on it for one reason - because if I didn't - the person who would die in this house was not Alex, or Aria - it was me.

I couldn't work 30 hours a week, be a full time student, manage a medically complex child's medical care and have a child who would cry at every moment possible. I was having chest pains.

Happily though I can report that the Prozac has done amazing for Aria. She calls it her "emotion pill". She says it let's her not have to feel so much. Her Mommy understands - she feels too much too.

I hop on social media to see family and friends enjoying their Christmastime - and all I can think is "ugh - gotta work another 10 hour day today".

Jealousy. Envy.

I see their children smiling and having fun. I'm happy for them. And honestly, really truly honestly - I'm glad they don't have to live like we do. I would not wish this intense stress and pressure on anyone.

It is the cards I was dealt. That has to be okay. I have to work towards that being okay. It is a daily struggle.

I am still learning. I am still growing. I am still teaching my girls to be humble and resilient and to be content with what they have.

I lean on our Lord. I lean on our Heavenly Father to guide me. I fail daily.

I think what I am trying to say here is - stop comparing yourself. Someone once said comparison is the thief of joy. That person was right. When I constantly compare my life to others around me, I lose all joy I have in my heart.

No this life is not easy. I made my choices and vows and I will honor those vows - because that's what our Heavenly Father wants us to do.

So now besides having a child with Heterotaxy, CHD, Abernethy Malformation, a bad liver, spikes in her ammonia levels, scoilosis, an upcoming major surgery - I have another child with anxiety, PTSD and depression, who at 8 takes 10mg of Prozac a day.

Some people would look at this and think FAILURE.....I look at it and think "Whew buddy, we got some work ahead of us!"

I'm probably not going to live to see 90, I will probably have to have triple bypass by my mid 50s, and start metformin for type 2 diabetes by my mid 40s - but hell - did I live. I lived. We all lived.

HAHA and as I type this a gigantic piece of one of my teeth just cracked off.

But no rest for the wicked - pediatrician appointment at 11 for Aria and 2 o'clock ortho appointment for Alex today.

Better go put my war paint on.

Friday, December 2, 2016

I Don't Fit In

I don't fit in.

I don't believe voting a person - any person - into the oval office will help our country.

I will never vote Democrat. They use indoctrination and scare tactics to get votes. They call people names like "deplorables" if they vote for anyone other than their chosen candidate. They are corrupt - yet claim to be for the people.

No one involved in government is for the people - they are there for themselves.

I don't believe that we can use the government to force tolerance - any kind of government force or indoctrination is fear mongering.

Jesus Christ is my Lord and Savior.

I do not fit in inside the health care advocacy world because I am not for bringing the government into further control of the system of medicine because I have talked to people in countries with socialized health care and they know people who have died because there wasn't a physican available to help.

Yet, as the costs of health care rise, I don't see how we can not go towards universal health care.

Look - I love everyone - I do. But the fear will not get us anywhere. Giving into the fear will not get us anywhere.

If I gave into my fear of losing Alexandra - I'd never get out of bed.

I have learned to understand that the course of this life is not going to be pretty. It's going to be ugly and no one - NO HUMAN BEING - is going to save us from that.

It is why I didn't vote Obama either time - because I saw the way people worshipped him like he would save us all. He can't. He is only a man.

World forgive me for voting my conscience. Forgive me for thinking above the trials of this world and understanding that no one, no one can fix what we have done. No one currently existing on this planet can fix this.

I trust in Who holds tomorrow.

Now don't get me wrong - He pisses me off from time to time.

Forgive me for voting with Jesus in my heart. Forgive me for voting third party because she was someone who saw the corruption of the media, our government and the incessant indoctrination of the Democratic party.

Forgive me for knowing with every ounce of my being that the two party system of the United States is broken.

Forgive me for wanting equality for all - be it in pay, or respect but not in the drafting of women into war. Forgive me for thinking there is a difference between equal pay for the same work and going off to war.

Forgive me for thinking that men and women are not equals - but two totally separate entities that TOGETHER make a whole - and that each have their specific qualities that help perpetuate the species.

Note - I didn't say take women's suffrage away, I said there are differences between the sexes. Women cannot be equal to men, nor vice versa. Because women aren't men. It's like comparing apples to oranges. I also never said anything like "being Gay or Trans is a sin". That's your business not mine. I just said government has no reason to be involved in any of your personal life.

Why can't we all just be? Why can't we all just love each other and not want to have this or that or keep up with the Joneses...

Because the people who really control our government have indoctrinated you to be involved in the mass consumerism of greed.

Stop and see. The Democratic party wants inclusion yet puts labels on everything and everyone because they think its the "politically correct" thing to do. They're not in this for you.

Now the GOP isn't much better - they infringe on rights and force their own agenda. Why? Cause they are the same as the Dems....just on the other side of the aisle.

In closing - I want all of you to know I love you. I want you to be happy. I want you not to be afraid. I want you to be strong and resolute and know that there is an entity who loves you no matter what. He made you.

I know there are a few of us more "conservative" types who just feel horrendous about things and extraordinarily excluded because we refused to vote for the Democratic nominee.

And maybe I'm ignorant cause I've never been raped, sexually harassed, hit by a man, felt inequality in the workforce - and maybe you all think my white privilege is showing.

But when I see that I have no money to buy my children clothes, yet I work hard, go to college, my Husband works, yet we make less than $40K a year, I don't see any privilege. Yet, I cannot get goverment assistance. Now if I divorced my Husband and was a single Mother I could. Are we rewarding this behavior? Are we saying "have babies - your government will pay for them - do not rely on a man."? I don't know.

All I do know is I work hard. Very hard. I do not trust my government to do anything for me. Because they reward irresponsible behavior.

I'm going to get off my soap box now.