Thursday, July 31, 2014

A Miracle for Erik's Family

         

Erik, (on the far left) and his family)     (Photo: Kirk Barron- Appeal-Democrat)




             This week I read the remarkable story of Erik Shieve.   Erik is a sixteen year old high school student who lives in California who was not known to have any medical problems.  On May 24th, 2014,  Erik had just played in a basketball game.  He went to sit down and promptly collapsed.  He was observed to be having a seizure. He was not breathing and did not have a heartbeat.  CPR began at once, but there was no AED at the venue !     Two physicians initiated CPR and  continued to provide it for ten minutes, until he could be transported to a hospital three miles away.

              Most of the time, a sudden cardiac arrest in a teen that does not receive aid from an AED within several minutes, results in a sudden cardiac death.  Erik endured a cardiac arrest with continuous CPR for ten minutes, and by the time he received a shock from a defibrillator, he would, most times, either not have survived, or would have experienced significant brain damage from having endured a sustained arrest for such a duration.  This day however, the miracle we as parents hope for in such circumstances, came.   Eric was not only resuscitated after ten minutes, but was talking coherently when his heart returned to a normal rhythm. He was then transferred to Intensive Care Unit.    The fact that Erik had survived and was talking  was relayed in a wonderful text message for those at the game from which he had departed.  For each minute that defibrillation is delayed, the child, teen, or adult in  sudden cardiac arrest, even with CPR, has a 7-10 % decrease in survival.  I am thrilled for Erik and for his family.  Erik was ultimately transferred from the ICU to another California hospital in order to receive an implantable internal defibrillator.

               I cannot hear stories such as this without my heart skipping its own beat and traveling back to the day, now five and a half years ago, when our beloved Daniel who had played soccer with college aged students the day before, at a family gathering, collapsed in the bathroom and also experienced an apparent cardiac arrest. When my husband and I got through the locked door, there was evidence of a seizure. (When there is a sudden cardiac arrest and a complete and sudden cessation of oxygenated blood to the brain, there is often a brief seizure, often with vomiting, and the patient often falls forward while collapsing.)   I started CPR at once and our daughter called 911 requesting the medical helicopter to the farm and telling them there was a cardiac arrest in a twelve and a half year old boy.   Although I gave two doses of epinephrine in total, we didn't own an AED, why would we have ?    The deputy sheriffs who were first to arrive, had one and tried it repeatedly,as per protocol, but by then we were likely at the fifteen minute mark.  I had done CPR continuously until they arrived and his color was very good, but that day,  there had been no spontaneous return of breathing or of heartbeat.    We did everything we could possibly do. I really did expect that miracle for us !    Daniel got CPR almost immediately. He received two doses of injectable epinephrine (because we had it for those family members who are beesting allergic)    All that was missing was the AED.  That day, the 7-10% per minute decrease in survival piled up too quickly.  Our miracle didn't come.  My being an RN who worked critical care and who had successfully resuscitated more patients that I can quantify,  counted for nothing that day.  I did not have the one piece of equipment that may have made the difference that day.    I still can't quite believe that our healthy, vibrant son Daniel, left us that day.  It often feels as if he is simply away and busy on some pivotal project.

              We do now own an AED..  It is an expensive proposition for a family to have.  The patches and the specialized battery should be changed each year, at a cost of a bit more than a hundred dollars.  The software to the device sometimes needs updating.  Ours has modes which allow it to operate for babies, children and for adults, although not all AEDs are designed to operate in this fashion.  Sadly, it may never be used here again, and was notably absent when the day when it may have been the only thing that would have allowed Daniel to remain with us and finish growing up, ultimately go out into the world.    However, an AED should be at every practice, every sporting event, every school, and every governmental building.  I am sure Erik Shieve's family would agree !




Tuesday, July 15, 2014

The Sudden Loss of Yet Another Child

This is Kate Livesey.  She even resembles Daniel.


Daniel, our son who died in 2008 of presumed Sudden Arrhythmic Death Syndrome which was thought to likely be caused by something called Long QT Syndrome.   He had a negative autopsy, and a normal physical just weeks before.






               Kate Livesey was an energetic, healthy lovely nine year old girl who dreamed of being a pop star.   When she wasn't enjoying playing sports, she was singing and dancing.   It's hard for me to look into her beautiful little face and not be reminded of Daniel    They even look facially similar to me.    In February of 2014, Kate who was perfectly well, was found slumped in the bathtub in an apparent cardiac arrest.  She was immediately taken to the Royal Manchester Children's Hospital where she was ultimately pronounced dead on February 7th.

              There is so much about this case that breaks my heart.   Like Daniel, Kate was active and well and believed to be healthy.   Kate's mother was known to have an arrhythmia which had been treated, but no one thought it important to evaluate her children for potential Sudden Arrhythmic Death Syndrome.  There were older family members in our family who had been treated for arrhythmia, and although I had asked if their issues had implications for our children, it had been thought not. Both children had a presumed diagnosis of Sudden Arrhythmic Death Syndrome because post autopsy review of organ systems made their cause of death "unascertainable".   Neither child had any signs of structural heart disease.  Both Kate and Daniel had their first and last episode of arrhythmic death syndrome in bathrooms.  Both of them left an older brother named Matthew on Earth.

               My thoughts and prayers go out to the Livesey Family who are only just beginning this journey.
We need to do a better job at identifying children at risk for SADS and screening them in advance.  More research needs to be done in how we can better identify families with children at risk.   Saving even one family from such a cataclysmic loss of a healthy child, is a worthy goal.


To donate in the memory of Kate to her family:

https://www.justgiving.com/Suzanne-Livesey/

 
                                

References for this post:

 http://www.mancunianmatters.co.uk/content/140769762-singing-girl-9-who-dreamed-being-next-cheryl-cole-died-without-warning-muamba


 http://www.dailymail.co.uk/news/article-2691241/Fit-active-nine-year-old-girl-dies-suddenly-struck-heart-condition-Fabrice-Muamba-bath.html






Saturday, July 5, 2014

US Independence Day, 2014

I use strawberries on my cake, and usually I don't configure it like a flag, choosing instead to mix the strawberries and scattered blueberries on top of whipped cream, but I think you get the idea. (  Photo: www.rockingwallpaper.com )


                  Independence Day which, in the US, is celebrated on the 4th of July, was a favorite holiday when Daniel was still on Earth.   We used to cook hotdogs, hamburgers, and chicken breast on the grill and have salad, cole slaw and potato salad with an early afternoon celebration meal.   Sometimes, I would make a sponge cake with cream covered with randomly set fresh strawberries and blueberries.  This would be a true red, white and blue cake. One year, I placed vanilla ice cream on it and then decorated it with the red and blue fruit and served it at once.  That evening, we would let off fireworks on the farm, in a place where we had hosed down the grass to avoid fires from sparks during what is often a dry season here.  We also avoided  using fireworks in areas where animals might be frightened by fireworks.         In the five and a half years since Daniel departed Earth, as much as I sometimes wanted to hold Earth still, as if he could somehow jump back to Earth, time has moved on.   His sister graduated from university and has established a career, and bought a home. His eldest brother graduated from the university,  has had heart surgery and also been struck by lightning since, and continues to gradually recover.  Another brother just graduated from college, and in a really lousy job market has decided to go on to get an additional degree.  The son we adopted a year after Daniel's departure continues to be at home and to make slow and steady progress in adapting to life in a family.

                     This year, we gathered for our normal Independence Day meal.  My husband grilled, and the boys made food.  Our daughter brought some food she made at her home. This year, I didn't make the sponge cake dessert.  Since a number of our animals are beyond normal life expectancy they require pretty attentive care particularly on hot and humid days,. my time before dinner, was taken by caring for them.  Many of them were here when Daniel still was.   In deference to the animals we decided not to have our annual fireworks here on the farm.   Yesterday the thunder and lightning frightened them, and so we decided to give them a rest.   Instead, my husband and two of the boys went to our county's fireworks display which was really quite something.  My husband recorded it on his iphone for the rest of us to see afterward.

                    So much in our family, our rural county, our country, and the world has changed since Daniel's departure. Children do indeed grow up, and this is what they are here to do.  However, so many of the other changes have not been good ones.  Happy Independence Day, Daniel.   You are missed and remembered, every moment, every holiday, and through each day as your siblings grow and change.  Thank you for coming here, and for being an important part of the frenzied holiday activity while you were.  We love you, and we always will.