What To Look Out For During Flu Season

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What to look for as a growing number of people lose their lives during flu season. Many of the people in these tragic cases made their way to hospitals and were told that they had flu when in fact they were already in septic shock. If you are septic you need an antibiotic to survive; this is good antibiotic stewardship practice. The doctor in this news piece gives advice on sepsis warning signs and the flu.

Read the original article here.

Christmas Season 2017

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It took courage to wake up and open my eyes on Christmas morning. It was Christmas Day and five years since we have celebrated Christmas with Rory. It doesn’t get any easier for us, his family, and we know we share this loss with so many other families who have buried loved ones.

The holiday season is difficult, and along the way, during the last five years, we have learned to wrap the joy we experience at this time of year with the intense sorrow that the season brings.

So – hug your little ones even closer during these precious holidays. Make sure to make memories that can be treasured forever. We have special little moments that we hold dear from times past, they are our treasures. These moments are the true meaning of life.

Sepsis or Flu? How to Tell the Difference

Sepsis or Flu

It’s a parent’s nightmare – your child is very sick but even if you’ve been to see the doctor or been to the hospital with them, they don’t seem to be getting better, and now that you know about sepsis you wonder if it is the flu or if it is sepsis…

Sepsis or Flu? How to Tell the Difference

In its early stages, sepsis can look a lot like a common flu – tiredness, achy muscles, fever, generally feeling really weak; these symptoms are shared by both conditions in the early stages of flu and sepsis.

But as sepsis develops, there are increasingly clear signs that something else is happening in the body: Shortness of breath, feeling like your heart is racing, cold hands and feet, extreme shivering, passing no urine, slurred speech. Your loved one’s skin might become mottled with blue marks and very pale, your child has never felt so bad. All of these or even a combination of these signs are clear indications of sepsis and mean that you should seek medical attention urgently. Tell your nurse or doctor that you are concerned about sepsis. Do not delay, as every hour is critical to survival and antibiotics and fluids must be administered immediately.

Remember, too… you can help prevent sepsis by ensuring that you and your loved ones are up to date on your vaccines – including the annual flu vaccine and as always stop the spread of infection by washing your hands!

Sepsis Education Plea From Major U.S. College Newspaper

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We spoke at length to the medical community and families when Rory died and we all agreed that people need to know about sepsis the same way we all know about meningitis.

Education is the key component to this and we are delighted that a major college newspaper has published an editorial about sepsis including Rory’s story and how it could happen again tomorrow to anyone. The editorial also calls on all states to include our educational lessons that are available to all students in New York State. This is a great step forward.

To read the original article on The Villanovan, please click here.

 

Introducing Lucia Di Spigno, Newest Member of the Foundation’s Medical Advisory Board

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The Rory Staunton Foundation, the leading sepsis advocacy group for children is delighted to welcome Lucia Di Spigno, RN, MSN, CPNP, CCRN as our newest board member. Lucia is currently a Nurse Practitioner in the Pediatric Intensive Care Unit at Cohen Children’s Medical Center in Long Island where she also leads the sepsis data collection and sepsis education program. As a nurse specialist who has worked as part of a Pediatric ICU team for over 30 years, we believe that Lucia will provide us with invaluable insight and education into the role of nursing in critical care.

As parents who have stood at the bedside of a seriously ill child we can attest to the importance of our nurses who stand in the front line. Not only do pediatric intensive care nurses provide the best of care to our children but they also assume the role of family as they help you withstand the shattering impact of sepsis.

It is an honor to welcome Lucia to our Board.

National Family Council on Sepsis Member Chris Aiello speaks at Heath Watch USA’s 11th annual Patient Safety Conference

On November 3rd, 2017 Chris Aiello, Secretary for the National Family Council on Sepsis shared the story of his daughter Emily’s tragic death from sepsis and stressed the importance of early detection of sepsis and the need for community involvement to implement effective diagnostic protocols at Health Watch USA’s 11th annual Patient Safety Conference. In a compelling speech (see video), Chris told conference attendees that mandatory sepsis protocols were needed in each state. Other speakers at the conference included past U.S. Surgeon General Joycelyn Elders, Pulitzer Prize-winning investigative reporter Deborah Nelson, Lisa McGiffert from Consumer Reports and Ivan Oransky, Co-Founder of Retraction Watch.

A dreadful septic shock conversation that now I wish I had been able to have.

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March 28, 2012, Rory was very, very sick. We ran from our house carrying him; he was too weak to walk. It was only one day since his pediatrician and a “top” New York City hospital had sent him home to get better with no medication, nothing. They had told us to give him time, that he would get better. As we ran with him back to the hospital, his little sister watched on with horror.

At the hospital, the same hospital that had discharged Rory the day before, everything was different. The doctors and nurses ran to meet us and Rory was settled in the Intensive Care Unit. Over the next 48 hours these wonderful doctors and nurses at the ICU fought like crazy to keep Rory alive and fought like crazy for us, to make sure we were o.k., to find us quiet moments to love our son, to allow us to gather, to try to give us time.

It was in the early hours of Saturday morning when the lead doctor approached us. “I think we have some hopeful news” he said. “We may only be looking at amputating some of Rory’s toes and part of his nose.” “It’s early days though,” he cautioned. I screamed silently in my head, and retreated and cried about a conversation I might be having with the most beautiful boy in the world telling him that he would lose parts of his body because of a scape on his arm. An injury he had pleaded for help for and had been turned away by his school, his doctor and his hospital. How would I tell him, how would we cope…

Sadly, it turns out we didn’t have to plan that awful conversation because everything got worse not better in the remaining hours. Septic shock is a ticking clock, and those who have been through will tell you this. If the toxins win, time runs out and your loved ones dies, if you survive and you beat the toxins more often than not you have a huge range of problems in addition to PTSD.

I dearly regret that I never got to have that conversation with Rory-the one I was dreading, the one that that would have gone something like… “I love you, you are alive, but you have injuries.” instead I cradled his dead body for hours and now like so many other parents dream about him for a lifetime.

Fourth National Forum on Sepsis 2017 – Keeping Our Children Safe from Sepsis

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On Wednesday, September 13­­–World Sepsis Day–the Rory Staunton Foundation held its Fourth National Forum on Sepsis in Washington D.C. The event brought together a powerful and passionate coalition of leaders in government, education, healthcare policy, biotech, and patient advocacy. Each left the event with renewed commitment to defeating this public health catastrophe and an understanding that what we require is nothing short of a revolution in how we think about sepsis in this country, from the halls of Congress to the emergency department to the classroom.

The theme of this year’s event was Keeping Our Children Safe from Sepsis. ​The focus was firmly on the importance of educating of our nation’s youth about sepsis, which our Foundation has long considered essential to ending the sepsis crisis. The Forum was held at the headquarters of our collaborators, the American Federation of Teachers (AFT). We thank the AFT for their hospitality and our sponsors for their generous support of this event.

This year’s distinguished speakers included Randi Weingarten, President of the AFT, Congressman Richie Neal (D-MA), Denise Cardo, Director of the Division of Healthcare and Quality Promotion at the CDC, Melinda McCartin of the National Association of School Nurses, and Chris Aiello, Secretary of the National Family Council on Sepsis.

The Foundation and its partners were proud to launch several major new initiatives at the Forum, designed to give every school-age child and their caregivers the information they need to understand sepsis, its causes, and the threat it poses and, ultimately, to drastically reduce the sepsis mortality rate.

  • A complete sepsis education curriculum for every new york child in grades k-12
    The Rory Staunton Foundation, in collaboration with the AFT and at the request of New York State’s Departments of Health and Education, the has produced the nation’s first comprehensive K-12 sepsis education curriculum. Every school in the state will receive the curriculum, with lessons designed to progressively educate students about the importance of a ‘back to basics’ approach to preventing infection, understanding the risks and signs of sepsis, and taking responsibility for educating others about infection and sepsis by devising public health awareness campaigns. The lessons are available through our website and via the AFT’s award-winning Share My Lesson platform, which is utilized by 1.2 million teachers nationwide. Learn more on our Education page.
  • A new animated video to spread essential knowledge about sepsis­–in under two minutes!
    Sepsis: What You Need to Know to Save a Life is a short, animated video about the dangers, impact and signs of Sepsis. Designed to be shared easily and widely on social media and via news outlets it is also embedded into the new education curriculum.
  • Ouch! I Got a Cut! – A new read-along picture book for young children
    This picture book for young children teaches the importance of a ‘back to basics’ approach to wound care emphasizes the three “C’s”: When you get a Cut–Clean and Cover!  This simple, easy to remember approach prevents infection and saves lives. Ouch! I Got a Cut! is available on Amazon.
  • #Fly2FightSepsis Campaign
    The #Fly2FightSepsis Campaign is a major sepsis awareness initiative inspired by Rory Staunton’s love of aviation. In partnership with Roche Diagnostics, #Fly2FightSepsis is a social media-based campaign that uses paper planes to raise awareness and drive conversations about Sepsis.Participation is simple and fun. It just takes two minutes, a piece of paper and a smartphone. Participants can dedicate their plane and record its flight. Videos can be shared on social media with #fly2fightsepsis. We look forward to releasing more details on this exciting new campaign in the coming weeks!

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The sun was intense…

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The sun was intense as I dropped by to say hello to Rory at his grave in Drogheda last week. I was visiting Ireland and our house is beside the cemetery where we laid him to rest. I thought a quick drop-by would be nice on my way to town. Always on my mind, always in my heart, visiting Rory is part of my routine when I am in Ireland.

I always talk out loud to him, “Hey Rory-how are you doing…everything is good…we miss you…let me see how your flowers are doing, do they need water?” This is often how our conversation goes. For me Rory is in my heart, and his grave is a memorial to him. Most times I can drop in and out of the cemetery and my lips don’t tremble, tears don’t fall because he is not there, I tell myself, it is a memorial.

Last week his eyes caught mine. His soft face on his headstone smiled and I caught his earnest look and his beautiful deep eyes met mine. It was one of those moments when time stood still and all I wanted to do was sit and look at him and love him alive, all over again, and again.

I talked to my little boy about how he wanted to be a pilot, I talked to my little boy about how he loved visiting Ireland and how he loved to ride his bike and be with his sister and cousins. I talked to him about American politics and laughed with those eyes about how many debates we would be having, as there was so much strangeness in the world. I talked to my little boy about his Irish cousins, those he never met but would have loved, and those he knew and loved, and I remembered with my little boy how he used to speak with an little Irish accent when he came here to visit. I talked and I talked to the beautiful deep eyes on his headstone. I could have stayed all day.

The little boy with the beautiful deep eyes did not talk back.

After a long time I left the cemetery and continued to town; my day had changed. My thoughts had shifted. My pilot, my little boy, was dead. I cannot hear his responses, I can pretend I know what he thinks but he cannot tell me.

Damn you sepsis. I have met so many sepsis moms and dads who have conversations with their children in cemeteries. Cemeteries are sometimes places of comfort but are often places of anger and despair. Our children should be fulfilling their dreams, they should be alive and they should be with us because sepsis is preventable, treatable and curable. We have been cheated.

I told this to my little boy with the beautiful deep eyes, I told him I felt cheated.

Rory’s documentary Dlí Rory: Dóchas Ó Neamh (Rory’s life: Gift from Heaven) to be rebroadcast

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TG4 (Irish TV) will broadcast Rory’s documentary Dlí Rory: Dóchas Ó Neamh (Rory’s life: Gift from Heaven) again on Wednesday May 17th at 8.30pm Irish time on TG4. It will also be streamed on-line during the broadcast slot. www.tg4.ie/en/player/home/

Rory should have celebrated his 18th birthday last weekend. Instead in the five years since he tragically died his parents Ciarán and Orlaith have fought to change how sepsis is managed in our hospitals.

Rory’s Law was enacted in New York State in 2014 and since then has been credited with saving more than 5,000 lives. The Stauntons continue their battle to have Rory’s Law introduced across the United States and to improve the standard of Sepsis management around the world so as to ensure that no other family has to go through the suffering that they did.

Dlí Rory: Dóchas Ó Neamh will be be broadcast internationally on the TG4 player: www.tg4.ie/en/player/home/