Horrible Horrible Day of shocks for Jake!!!!!!

All posts from Jan 1, 2006 thru Dec 31, 2006

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ruthy
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Cyndie @ Jake

Post by ruthy » December 20th, 2006, 12:24 pm

Cyndie , so sorry Jake had to go through this, i hope you all have a Merry Christmas , sending my thoughts and prayers , ~ Love ~ Ruthy xx.
DCM, V.T , DIABETES, SLEEP APNEA, DCM GENETIC

Only when we are no longer afraid do we begin to live.

Amanda1

Post by Amanda1 » December 20th, 2006, 5:25 pm

Hi, Cyndie~

In 1980 I had my open heart surgery for a VSD repair at Children's Hospital in Boston. My cardiologist there was Michael Freed, and he was rated one of the best pediatric cardiologists in the country, and within the last couple years the best in Boston (according to Boston magazine). Anyway, I have always felt good about going there, and kept Dr. Freed as my cardio until I was 27 and just needed to have someone closer to home, as well as shift to the care of an adult cardiologist.

All my best wishes to you all as you work through this. I am only 60 miles outside of Boston center, so if you need support, you've got it.

Amanda :wink:

tomrostron
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Post by tomrostron » December 20th, 2006, 6:55 pm

cyndie. just read your post on jake. i wish you and jake all the best for the future. joe

CarlB
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Post by CarlB » December 20th, 2006, 7:57 pm

Cyndie, hope Jake get strength from all of us and will have all our prayers to get what ever is necessary to get everything corrected. Hope the holidays will be a blessed one and smiles return to all
CarlB

karslake

Post by karslake » December 20th, 2006, 9:48 pm

My dear Cyndie,

So sorry to read about the horrible time you and Jake have had. All my thoughts and prayers go out to you and the family.

You have my sincere admiration - I just don't know how you cope.

With love and best wishes,
Eve & Blabbermouth 111

Carl
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Post by Carl » December 20th, 2006, 10:12 pm

Dear Cyndie,
Jake & your family have had more than your share. I've had a 23 therapy storm so I do understand what Jake experienced. I'm 66 and truly can't imagine what's going thru Jakes young mind. Stay strong as he will need to draw from the strength of your entire family.
You will be in our thoughts and prayers through out this holiday season & this coming year.
CONTINUE TO CONTINUE
CARL

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~guin
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Post by ~guin » December 20th, 2006, 10:34 pm

Hi Cyndie;

I just got some info on lead extraction from a friend and thought I would pass it along to you....



There is a doctor performing lead extractions using a laser procedure that greatly reduces the risk of excessive cardiac tissue damage.... in Miami. More information about Dr. Charles Byrd is available here - from a British site:
http://europace.oxfordjournals.org/cgi/ ... 4/1/25.pdf

Byrd's name was mentioned when I indicated my reluctance to have a new lead installed last week... should they find the old one would not work with the new Saint Jude device. My doc agreed to zip me up and waken me if that was necessary.

There is another doctor out west who is doing the laser procedure... but I know nothing about the experience of Dr. Schaerf:
http://www.providence.org/LosAngeles/Se ... action.htm




I also have another question about the incident of the ball to Jake's chest... As a School Board Trustee and an ICDer, I have to ask -- was this a freak playground incident, or was this organized sports/physical education? Are the Docs assuming that the speed and landing of this ball caused the fractured lead? I can see that there was no need that the teacher came without the AED -- Jake has one built in... But if this was organized sports -- should he be wearing a chest guard/vest for additional protection? I don't know the size of youe school population or square footage, but you nedd to ask: "what are the appropriate procedures the teachers should follow in these cases?" " Where was administration?" "Why wasn't 911 called immediately" "Why was my child moved?" "who was advocating the safety of my child?"

If I were you, I would go directly to administration this week, before the break for the Holidays, and start asking questions, and develop a plan for the future - not just for Jake but for all the kids. There has to be procedures in place for the safety of all students. Start asking questions and get answers, don't be afraid to make requests or suggestions.

Good luck to you.
~guin

jana
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Post by jana » December 20th, 2006, 11:36 pm

Cyndie -- Give Jake hugs from all of us. Poor kid!

I agree with the others -- go to the school and find out what the heck happened. It seems a little ridiculous to me.

Also, I wonder if he shouldn't wear some sort of guard. I think they told my nephew's parents (18 months w/pacemaker) that he could never play contact sports, and I'm assuming things like ball games. With all the stuff they make now, seems like he could have some protection.

I had a friend in high school who had scoliosis. She wore a brace that covered her lower back. It seems like something like that would be helpful, and should be simple to get hold of.

Good luck.

Jana

P.S. Does he wear a monitor at night with the lead out? Seems a little scary to me.

lead

Post by lead » December 21st, 2006, 6:56 am

Unfortunately, given the temperment of the times, this could have been deliberate. My mother taught 1st grade and one year had a hemophiliac in her class. This was in the days of communal bathrooms and other kids would punch him in the bathroom just to see him bleed.

PaulDC
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Post by PaulDC » December 21st, 2006, 12:02 pm

Cyndie

So sorry to hear that you and your family went through this terrible ordeal. I cant even imagine if something like this happened to one of my kids. Eventhough it was terrible, I am so glad to hear that it was his ICD and not his heart.

Take care and have a great X-Mass with your kids.
PaulDC

"Short-Coupled Torsades de Pointes Ventricular Tachycardia" - ICD Implanted 09/03/05
...whatever time I've got left now belongs to the big fella uptairs - Ronald Reagan

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Momof2HeartKids
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Post by Momof2HeartKids » December 22nd, 2006, 9:09 am

Thank you everyone for the kind words of support! I am lucky to have all of you to help us through this.

Thanks for the article Guin when aI get a minute I look forward to sitting and reading more about this new prodecure.

Jana - mentioned him wearing protection. They talked about this with us and will be fitting him for some kind of protection guard. They custom mold it to his shape.

Amanda.... I think Freed is the one who will be doing this with the EP. Ill double check I wrote it down (my mind is fried I cant remember) & I dont ave the paper right here... It sounds very familiar though.

As far as the procedures and what the school did and didnt do I will post in another topic, I am upset about it and I know I need to write a letter. The doctor already did.

Thank you so much for the replys and kind words!!! Happy Holidays to all of you!
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

cocoalab
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Post by cocoalab » December 29th, 2006, 11:34 am

Cyndie,
I hadn't read of this until now. I am so sorry and an extra grateful that he is getting his new ICD so soon. I though the was getting it replaced because of the lead being to short.

I can only imagine how awefully hard that was to watch.

big hugs,
wendy
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

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