Saturday, August 21, 2010

Excuse me, can I tell you something?

Please click on the links and continue to read on!

http://www.youtube.com/watch?v=52RJWyjogY0&feature=related

For the past 12 or so years, I have had the pleasure and blessing to present creative dramatics to children, mostly in a Vacation Bible School setting. Also, I spend 110% of my time entertaining my kids and thier friends ranging in age from 5 to 20+. So, as you can see, since 1998 when I was last in the "professional" world, I have mostly communicated with those much younger than I. Other than my husband, DannyBoy, one might say that I have had limited adult contact.

Until next Thursday, Aug. 26th.... at noon... a room full of adults.

I am scheduled to present to a group of adults, yes, adults at our local Rotary Chapter here in Berkeley Springs. This time, I won't be reading or playing a part. Oh no! This time, I will be talking about something very near and dear to my "heart". It is quite serious and it is something called Brugada Syndrome.

My mission: To convince the members of the Rotary Club to purchase an AED, or Automatic External Defibrillator for the school where our children attend.

So, "excuse me, can I tell you something?" has something to say and I need your help. For you see, I'm not sure I can communicate this effectively without falling apart in front of everyone. Yes, it's that upsetting for me. Just watch this:

Here is our personal story and why we desperately need an AED for the schools, not only where the Hott children attend but also every school across the county and across the country. It was an early 6:00 a.m. on Wednesday, May 5th, when I was admitting Dan to the Cardiology Department of Winchester Medical Center. A few days earlier, they discovered a rare and unusual, not to mention lethal, arrythmia in Dan's heart. He was diagnosed with something called Brugada Syndrome (http://www.brugada.org/), a "syndrome that causes sudden unexpected cardiac death in apparently healthy individuals. The sudden death is caused by severe disturbances in the rhythm of the heart. This disease is known as Brugada Syndrome and it is heriditary."


It wasn't bad enough that we discover that Dan has this crazy, rare, Dr. "House", thing happening with his heart, but to hear his doctor tell us that it is heriditary was just more than any sane person could endure. Just moments before they wheeled Dan down to the operation room to surgically install a permament wire to his heart and "computer" just inside his chest with the capacity to deliver an electric, yes ELECTRIC shock, his doctor calmly tells us that Dan's ecg's were reviewed by Dr. Brugada himself in Spain; his ecg's indicate that he had all three "bad" readings; his prognosis is poor without an ICD, AND our children should undergo genetic testing as soon as possible.


What? Okay, so I've just heard that my husband would die without an ICD and now he was telling me that my babies could have inherited this fatal arrythmia in thier hearts? Needless to say, I was a mess; but fortunately a dear friend came along with me to sit at the hospital while Dan was getting this new piece of equipment in his chest. Andrew took me to breakfast while we waited and all I could do was sob in my Cocoa Puffs. Why? Why were we faced with this terrible situation?

I can't tell you how difficult it was after we first heard the word "Brugada". No one had ever, EVER heard of it! Dan's nurses were looking it up and using his case for nursing studies. One nurse was so worried that she cried before sending Dan home with the knowledge of this syndrome before having the ICD surgery.

And a rough time at home it was! Brugada can strike a healthy person. It is often the culprit of stories of healthy athletes dying unexpectedly. Even rarer for children, it is now thought to be a possible cause for Sudden Infant Death Syndrom in infants. Doctors now have linked this arrythmia to something new called Sudden Unexpected Death. The electronic mal-function of the heart actually appears in an ecg, sometimes!! Dan first was told his ecg was irregular in 2001. Studies show that once it is first recognized, patients live 72 months without an ICD.

Well, here we are in 2010! So... what does a family of six do after literally getting a second chance? We celebrate! We spend precious moments together, laugh, play, worship, and praise God that He arranged for this to happen. Sounds ironic, right? Believe me, it is!

So, we got back from the hospital and the following Sunday was Mother's Day. I was a mess. You know, there is some truth to be said that one can read too much on the internet. The more I researched Brugada Syndrome the more I worried. For children (and adults too), thier heart can experience the fatal arrythmia following strenuous activity OR it can quietly occur while sleeping! My husband would force himself awake to the point of uncontrollable exhaustion and then look at me and say "Watch me sleeping! If I breath funny, bang me in the chest." And my babies... Oh dear Lord, the miles I have walked this house at night just checking on them to make sure they are still breathing. Because after May 5th, each night as I tuck my children and say our prayers, it brings an altogether new meaning to:
"Now I lay me down to sleep,
Pray dear Lord, my soul to keep,
If I die before I wake
Pray dear Lord, my soul to take."

Well, we did celebrate this summer! We traveled to 6 beaches; drove 7000 miles; played in the sand; and if at home, well, we just watched the sunsets. Yes, nothing more than all the little Hotts running outside and yelling "It's time for sunset!" is enough to make me thankful for one more day; because, with the knowledge of this strange thing called "Brugada", it really is an overwhelming sense of gratitude for just that -- one more day.

And now, well... Dan's genetic doctor told him to be sure that the schools where our children are all have access to an AED. An automatic external defibrillator increases the survival of cardiac arrest from 41 to 74% if administered in the first 3-5 minutes. After spending such quality moments and having them within my "radar" all summer, the thought of them being away at school frightens me beyond breath. Take a look at our Violet here. She is our budding athlete:




She goes to Warm Springs Intermediate School. And they do not have an AED.

To conclude, I want to share with you a picture from the back of our house. It is something we discovered just recently. Funny thing is, we have lived here for 12 years. You see, until two years ago, it was there but hidden in the trees. Now, each evening when we see this spectacular sight, I really do hear God whispering, not just to me but to us all ...

"Excuse me, can I tell you something?"

















What is He telling you?

So, if there are any blog readers out there, thanks for listening and please think of us next week during Rotary. It will be my first time at a Rotary meeting... hope it's fun! Please comment and send me your advice!
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