Sunday, February 22, 2015

The Dance With Ondansetron (Zofran)

          




        Zofran is the brand name for a drug whose generic name is Ondansetron.  It is a prescription drug often used for severe nausea and vomiting as often seen in viral illnesses of the stomach or "stomach flu". It may also be used in conjunction with cancer chemotherapies which can produce severe nausea and vomiting.
It is occasionally used to treat hyperemesis gravidarum or the severe abnormal exaggerated upper gastrointestinal response to the hormones of pregnancy.  It is not indicated in the treatment of normal nausea and vomiting in pregnancy.  There are some occasional other uses particularly in the field of addiction and withdrawal. The drug is available as an injectable and also in an orally disintegrating tablet.


              In general, this is a good drug. It can help to prevent the admission of a patient to a hospital for overnight intravenous hydration by quelling the cyclic severe nausea and vomiting of certain viral illnesses. It can help to advance the settling of one's stomach sufficient to allow some fluids taken by mouth and this is a largely positive thing. It can help to make chemotherapy more tolerable for a patient who requires it. It can allow the patient to complete a recommended course rather than to electively abbreviate or terminate it.


              However, there are a subgroup of people who need to be particularly careful prior to using this drug. Ondansetron is noted to have the capacity to lengthen the QT portion of an otherwise normal EKG. In a susceptible subgroup of patients, this can lead to arrhythmia and potential for sudden death. Certainly anyone who experiences a rapid heartbeat or any noted change in heartbeat while taking Ondansetron should return to the hospital emergency room.




              As the parent of a child who died of a sudden arrhythmic disorder which had been unknown to his doctors and to us, why would I mention it ?   Daniel did not use Ondansetron prior to his sudden passing.  However, this may be of issue to those of you who have lost a child or family member and who have other children or family members who may have the same proclivity to arrhythmia, which may be as yet undiagnosed.   Two of Daniel's brothers have in fact, used Ondansetron for a day or so following a stomach flu on two separate years.  We did use the drug knowing that arrhythmia was a potential side effect, but the emergency room physicians ordering the drug made the decision that the benefits outweighed the risks at that particular juncturet of the treatment. Both young adults were well enough to be able to discontinue  the drug after the initial 24 hours of use.


               My reason for letting all of you know about Ondansetron is that even among the population of those who have lost a sibling to a sudden arrhythmic disorder that  there can be an appropriate short term use for the drug. You should also know that a sibling of someone who has died of presumed Long QT Syndrome should not receive this drug in the longer term.

  Make sure that any physician ordering drugs for your family or your children know that you have lost a family member to Long QT Syndrome, if in fact, you have.

              As always, just as my thoughts and memories are always with Daniel, my thoughts are also with the other parents and families who suddenly and inexplicably lost a healthy child to a sudden arrhythmic death of which there is most often, no warning.



Tuesday, February 10, 2015

While Sweeping and Mopping

           





             Yesterday afternoon I was working with the horses and the alpacas. I was moving alfalfa, sweeping out stalls, rinsing out water buckets as I listened to the radio I tend to keep on in the day for the animals.  Only one station stays on playing calm music and interviews all through the duration of the day.  It's not my favorite station but it goes a long way to keeping animals calm especially when there is bad weather which is amplified by the tin roof.   Yesterday as I swept I listened to the story of a young boy who had a serious cancer at age ten. His mother had moved Heaven and Earth in order to get him into some experimental studies.  From the interview he was a precious boy and for a moment I understood his mother's quest to do almost anything to keep her son alive.  As I listened, swept, mopped and distributed a coat of thin pine shavings to a shiny stall floor, I was hopeful.  Certainly such a promising drug regimen would work on children as well as adults. I expected to hear good news, and so I slowed my work for a moment to listen. I was unprepared for the news that the boy, Joey, had not responded to the drug and had died the day before Thanksgiving.  All at once I recalled that Daniel had departed from us the day after Thanksgiving.   The feeling sat there in my abdomen as if I had been gently kicked by a short horse !    I was especially saddened to hear the interviewer ask the mother if she had regretted continuing treatment when the doctors had given them the option to go home to die and to see his friends.  She had decided to stay the course waiting for her miracle, and this time, it had not paid off.  At first she said she thought she made the right decision, and then even within the same sentence, she changed her mind.  This is a doubt I think she will have all of her life.  Sadly, when we lose a child every choice we ever made will be periodically second guessed.   Why did I not take Daniel to a cardiac electrophysiologist at twelve ?   Because I had no idea he would develop a cardiac electrophysiological issue.  Why did I not let him stay out later a couple of days before his passing ?  It would have been unlikely to have made any difference, and he would have enjoyed it.  Why did I not divert money from other things we did here, and take Daniel to Europe ?    Because, at that particular juncture of his life,  he would rather have stayed here on the farm with his siblings, his animals, and his computer !  Parents who have lost children will always second guess the choices we made with them   I suppose this comes with the territory.  There is something we can do though. When we hear of someone who has lost a child, we can support them in the choices they made.  We only have limited information when we make some of the choices for our children. We don't have a crystal ball. We don't know all that will happen in their future lives or in our own.  We need to work to understand and accept that we made the best choices for our children with all of the information we had at the time. We would have done nothing less for our beloved children.  My prayer yesterday is for Joey's family and particularly his mother.  May she come to know that she did everything she could for him in a difficult situation, and that he knew that.  This is what I wish for all of you who come to Daniel's blog for some crumb of wisdom.


This is a link which would allow you also to listen to the story of Joey Xu





Sunday, February 1, 2015

Please see: Remembering Kenji Goto


           Please see my post for today on one of my other blogs:

 Remembering Kenji Goto


     Daniel would applaud the many efforts of this brave humanitarian during his 47 years on this Earth.








  

Wednesday, January 28, 2015

Found: A Picture of Daniel in a Blond Wooden Frame

        

Even in grief, the happy memories should never end.




           This week I have spent some time taking care of my new infant grandson while his mother has been working, ensuring excellent insurance coverage for his cystic fibrosis.  A great deal of his care is nursing care, rather than simple infant care.  Much of it is also time consuming.  Toward the end of the week while he was sleeping in the afternoon I had a chance to go through some things I've had in boxes.  It is time to either decide to give some of the more lovely momentoes of our children's babyhood to my daughter, or to donate them. We simply can't keep everything, although believe me, sometimes I have tried !   It's time to free up more storage space, at the very least.


           In one box I found a china half moon lamp which sat in my eldest son's nursery during the first year of his life.  I found some pewter banks shaped like a carousel which were baby gifts for one of our children when they were tiny, although I am unsure who gave it to us, or which baby was the lucky recipient. I found all manner of child safe night lights. At the bottom of the box I also found a perfect framed picture of Daniel which oddly was taken at about the same age my daughter's baby is now.  It was almost as if Daniel was wishing to say, "I remember when we were together and you were taking care of me at his age !" This framed picture sat in Daniel's nursery on the dresser in our home in the suburbs,  until we moved to our first farm, and then, for a time, Daniel shared a bedroom with our other son Matt.  Many of the things in his first room were simply never used again, and then so quickly weren't really age appropriate any longer.


            I thought that perhaps in taking care of my grandson that the moments of caring for Daniel as a baby might blur, and I might forget details of Daniel's babyhood.   Strangely, this has not at all been true.  Just as my other children were, each of them are distinctly different individuals. In fact, caring for my daughter's baby has actually helped me to remember Daniel's babyhood in detail as well as the distinct differences between each of my children in babyhood  just a short time in much more detail.


            I am not yet sure what to do with some of the articles I found in the box, but the blond framed picture of Daniel at four months will have to go in a position of honor where I see it from time to time. Daniel, your beautiful flesh suit may not be on Earth now, but it was, and I plan to remember each of those days as best I can, through the remainder of my own days here on Earth.





Tuesday, January 27, 2015

Unfinished Online Business






Dear Daniel,

           When you passed so suddenly six years ago there were many things I could not do, and in the shock, many things that were not immediately available to my memory.  You loved the internet and had quite a life there. Although I had been a part of setting up those accounts initially, because you had been so young, I not only didn't recall your passwords, but I couldn't remember where the paperwork where I kept them had been.  This was sad because you completely disappeared from your internet haunts and from computer gaming with no explanation to internet friends.  Some time later your brother Matt did inform some of the groups where you and he had been members, but I have always felt that I failed you by not properly managing your internet legacy.

              Today, while getting a jump start on early Spring cleaning, I was working on filing and throwing away a stack of papers I found in a file stuck between furniture in my room and the bed. From the receipts and paperwork most of which I threw away, it had been there for quite some time.  One of the papers I found was the registration confirmation to your e-mail account.   I had long since forgotten your ID and your password was penciled in below it.   You hadn't used this account since November of 2008.  Well, I am assuming that because this is when you ceased to occupy your flesh suit here on Earth.  I don't know why, but I decided to log on and see if your account still exists.  Apparently, following a period of disuse, the id again becomes available.  I decided to reregister all your information as it was,  in case any of your friends ever try to contact you, in future. At least I could tell them what happened.   Everything we had registered before is now entered, except that they needed a longer password that we had used initially, and they needed a cellular phone number. I used the same pseudonym you has used before.

              I don't really know why I did this. Perhaps in some small way, having your e-mail address reactivated means that you never really died.  Maybe you just exist on a plane of thought and energy and can check e-mail telepathically.   Maybe in some way, you are aided by having your e-mail activated.  Maybe you will simply recall how important you were and are here among the family you have still tied to Earth.

             Feel free to shoot me an e-mail.   With an e-mail address, you could review the book I wrote about you.   In all seriousness now, you are, and always will be, truly loved and truly missed.





Tuesday, January 20, 2015

A Splash of Daniel

            
Sometimes, it seems as if the farm and the animals cry in Daniel's absence, a lot like the frozen holly. I hope he is doing something important where he is.




         I try hard not to look back at the time pre-2008 when Daniel was still on the Earth, and compare it too strenuously with the present day.  To me, his mother, it seems that life when he was on Earth was in color and one good thing happened after another. Following his sudden passing that day, it too often feels as if the color, the sense of humor and too much of the hope in life, evaporated with him.  I am very mindful that the loss of a child must be even more intolerable for the family without other children.  I have been fortunate in that we had three other children, and that we adopted a son the year following Daniel's departure. This gives us other souls to love and with whom to engage.  Sometimes, the spirit of Daniel is palpably missing from many family gatherings.






                And yet, once in awhile there is a special day.  Late in 2014, in the week that followed Christmas, our daughter and her baby were at the farm, along with our eldest son A., and our son Matt, who was home from the university.  J. who is our son who came to us through the blessing of adoption, was also there.  In just one block of time, I felt both Daniel and my Dad there for the gathering.  There was laughter and amusement. There were irreverent jokes and for a moment, I almost forgot that Daniel wasn't really here in the flesh.  The legacy of Daniel won't be a large family of his own, however it will be a family who was indelibly impacted by his intellect, his humor, and his music. Without my father, none of us would be here on Earth !   Yes Daniel, we are still here, and in many ways, so are you.








Thursday, December 25, 2014

The Spirit of Christmas Revisited

Picture from:    justletmevent.wordpress.com

   I try not to recycle posts, but in all honesty, this post which appeared here December 17, 2011 probably says what I feel about this time of year, better than I could now.    Merry Christmas Everyone.




Picture from    selfexcited.blogspot.com


    We come to Earth as babies, and many of us find a loving mother, often a loving father, grandparents and sometimes even siblings.  Uncles and aunts and cousins round out our families, and many of us are lucky enough to be woven into a basket of loving family as we are babies, toddlers and children. We have more connections to the world than we can count, and this is how it is meant to be.  Of course, this can change. Fathers can leave or die, mothers can return to work, or pass also.  Uncles can move and take cousins with them.  Disasters can take entire families as well.   Most often we enjoy our extended families and don't begin to lose large numbers of our family constellation until we are in our fifties or our sixties, when God prepares us one family member at a time, to begin the process of realizing that we will return to Him, from where we came.
            Please try to remember this holiday season that many people have not had the genuine treasures that we associate with Christmas and the holiday season. I am not talking about presents or material things we have. I am speaking of the real treasures of this life, the love, camaraderie, shared acceptance and joy that can come from spending time together as a family.   Not only do many people not have this as children, but it can be hard to create in one's own family when one cannot recall these moments well in adulthood.
              Some of us lose entire families when circumstances take us from them, and some of us lose family when they pass to God, one by one. In any event, people are often left here on Earth without the connections to others they had when they were younger.  At Christmas, when the hype of happiness, joy, and a glorious special day is all around us, it can be a very difficult day for many people.   Please remember this, and take part of your holiday season and share it with someone who might not have the connections to family or to friends that you do.   Jesus Christ did not send a blessing to all of us on a proxy date of his birth. He sent us blessings year round. The longer we dwell on Earth the harder it can be for us to see sometimes.  And this, is one of the most important things I have learned from Daniel and also from my Dad.   Merry Christmas all.




Saturday, December 20, 2014

Remembering "Noche Buena"












                        Daniel was very fond of the alpacas that we have had here on the farm for many years.

This is the story of one of them, posted on another one of my blogs..

  Remembering "Noche Buena"





Tuesday, December 9, 2014

The Abyss

                  

Sometimes the decor does not describe what we feel inside.

  

               There was a film that Daniel and the other kids used to watch periodically, called the Abyss.  They enjoyed it and we have a copy on DVD somewhere in the house to this day.   However, the abyss to which I am referring, is something a bit different.

                        Each year since Daniel and my father passed, we go into the holidays with hope and positivity. Thanksgiving often has glorious weather in Virginia, often with warm winds, fallen leaves and easy travels.  Of course, Daniel passed suddenly the day after Thanksgiving, at the beginning of the Christmas season.  With the completion of the washing and putting away of the last Thanksgiving platter, our thoughts turn to Christmas, and the weather turns cold, just as it did that one cruel year in which we spent the weekend after Thanksgiving planning a funeral rather than putting up wreaths.  The cold weather which seems to come on precisely that weekend coupled with the fragrances of this time of year has almost a transformative power to take us back to the very moments when Daniel evaporated from Earth.  Thus begins our own annual abyss.   I am not saying that the holidays no longer have joy here, because we find it somehow, to honor him and to honor my father, but during the period of time which stretches from Thanksgiving to Christmas, the abyss is a continually repeating bridge from cataclysmic days and to firmer footing in which we decide that God is indeed in control and that He still intends the rest of us to remain here and live a life as best we can.  It is however, never easy and never carefree, this new normal.  These days become less terrible than the initial ones, but never without the overlay of having suddenly and inexplicably lost Daniel, and my father just before.

                         We are not depressed, however we are ever mindful of the shortness of human days.  Each Christmas we enter the season with fewer friends and relatives than we had before.  This is normal and yet it does not seem so, so many times.

Sometimes the answer to surviving this season emotionally intact is a scaled down Christmas with only what was really important to you, and yours.


                         For many people the Christmas season is an abyss for you too.   Please know that our family is thinking of you and praying for you too.  Please know that although the season can be hard on many of us who know a loss or layered losses at this time, that eventually, we are all reunited and that eventually all will be well.  Until then, enjoy each moment of your life as best you can, and as it benefits those you love. Celebrate in the manner in which was most important to you and to your loved one who isn't with you this holiday season.  Remember that even without them, that Love never ends and that it endures all things, even our separation across the veil.   There is more on the endurance of love in a quite famous and wonderful book, but of course, you know this.



Thursday, November 27, 2014

The Six Year Mark : The Music Cafe Closes

      



                       Tomorrow, Daniel will have been gone from Earth for six years.  He departed on Black Friday, and this year, Thanksgiving falls on the 27th and Black Friday, once again on the 28th, just as it did on the year of his departure.  These subtleties are not lost on me, and I am afraid that I might never cease to notice these.




 

                   Like most families, Daniel and our other children had routines. We had things we liked to do regularly, and we had regular outings.   When our two eldest went to college,  Daniel and his older brother Matthew and I continued to home school.   We also had a number of diversionary activities which kept our lives busy.  Weekly, I would take both boys into town to the library where their own laptops could access the super fast internet connection.  They would do some schoolwork and research there, but I was fairly well aware that most of the several hours a week there was spent internet gaming.  They loved being dropped off there, and I used the several hours to run errands, fill prescriptions, pick up dry cleaning and alterations, and get to the bank.   When I picked them up Daniel especially wanted to go to the music cafe.   The music cafe was a business created by a young man who had graduated from the music school at the university in Richmond.  He found a way to combine his love of music, of business and of food in one endeavor.  The music cafe is a lovely rustic cafe which has a stage. It provides great coffee and tea, breakfast, lunch, and a light dinner.  Several nights a week both local and some big names perform in the fairly intimate venue.  The back of the structure provides music lessons by the owner and other seasoned performers and could actually be used as rehearsal or recording space. One can also buy guitars, guitar strings and other musical goods.

This is the owner and his family.  They were kind to us when Daniel passed.



                 Daniel especially,  used to love to go to this cafe for a soda and a brownie after the library.  Occasionally we would have a meal there.  The owner has a lovely young family who would often be in the cafe from time to time. Of course, now that Daniel is gone, I wish I had taken him there more often and sprung for the meals rather than just allowed this place to be a treat station with music.





                This year I read in the local paper that after eight busy years, the music cafe has closed. It remains intact and up for sale.  Daniel would be most unhappy about this, if he remained here on Earth.   My hope is that even in such a difficult economy someone else decides to take over and keep this point of light and of music open for other families.

                It seems sometimes that as each year passes since Daniel's departure that more and more things he cared about seem to depart or evaporate one by one.  The music cafe was something I had hoped would remain here for a long time.

              Daniel would want me to say,  Happy Thanksgiving.








Update:                    Just shortly after their closing, a new group took over and reopened the music cafe. They have revamped the menu and have a different vision. My hope is that this wonderful place survives and thrives, almost as if Daniel could visit  when on furlough.