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

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

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Momof2HeartKids
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Horrible Horrible Day of shocks for Jake!!!!!!

Post by Momof2HeartKids » December 19th, 2006, 10:08 pm

:cry:
I actually came on here last night to post and was reading 'leads' post about his shock storm and ( and Lead, I am so sorry you went through that and I wish I had more words of support for you right now but I am feeling so frazzled and just wish that hadnt happened to you.)

I was too shaken up last night to post...

Yesterday I got a phone call from Jake's school that he was hit in the abdomen with a ball and his ICD delivered therapy. The nurse stated that he told her he got 3 shocks and she reported that he was continuing to receive them. I instructed her to call 911 (dont know why the H*ll they didnt 1st anyways). I called the EP in route and made it so fast to the school, I could hear him in the backgroun crying and I felt terrible that I wasnt with him as he was going through this. Poor Jake was so upset. The EMTs were there and I went with him in the ambulance where he received 4 more shocks on the way to the hospital! I can not even explain... I feel so bad for him I wish so bad that it was me that went through that and not him... this poor kid has been through way to much for his age and my stomach is still sick thinking about it! The way he jerked and screamed out I will never forget and I felt so helpless. I thought I was ready to talk about it but I am sitting here crying so hard for him :( :cry: I wish I could just take away everything he went through.

Well when we arrived at the ER our EP met us at the door and had them stop and not even move him until he interegated him. He did so and determined the shocks were innapropriate and turned the therapy settings off. Upon review of it, it was determined that he was shocked THIRTEEN TIMES!!! ('within a short one hour period' is how they wrote it).

He has a micro-fracture in the lead which caused the device to read the electrical 'noise' as a bad rythm and fire innappropriately. He now needs to have the lead extracted and replaced. I feel so helpless and I think I aged 100 years yesterday!!
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)

Ginny

Post by Ginny » December 19th, 2006, 10:29 pm

Cyndie,

I am so so sorry that Jake had to endure this terrible episode! Thirteen shocks! I can't imagine what you must have gone through worrying about him.

So, it sounds like the ICD is off until the lead is replaced? I imagine things will happen quickly. Will your regular medical team replace the leads or do you have to travel to a specialist?

Keep me posted on the whens and hows, especially how Jake is doing.
I'll be thinking about you all!

Ginny

Amanda1

Post by Amanda1 » December 19th, 2006, 10:33 pm

Aw, Cyndie... I cannot even imagine how you feel right now. All I can offer is my prayers for you and Jake to get through this. Poor little guy...

Amanda

Mark

Post by Mark » December 19th, 2006, 10:44 pm

Cyndie,

How awful that was for both of you, I have tears in my eyes too for you two... poor Jake has really been through quite a lot for his young age! :( All my prayers for Jake and for you Cyndie- Please try and stay focused as best you can and if we can help in any way, let us know.

God bless you both and keep you safe...

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Momof2HeartKids
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Post by Momof2HeartKids » December 19th, 2006, 10:46 pm

Thank you and it is off until they can replace it. He is also home from school until then as well. They want him supervised better than the school can provide and they want the AED to go where he goes.
As far as for the lead change. I know I had mentioned that when this time came there where only 2 people in the US our EP feels are experienced enough to handle this for a pediatric patient. One is in Houston, the other in Boston. We didnt care which we would take him around the world for the best doctor if we had to. So we left the decision up to them, I asked them to choose who they would take their child to and he felt it was equal, so with all things equal, we ended the recommended us going with Boston because of how highly rated their children's hosp is and it is much closer for us. They would like to have it done right after the 1st of the year. We dont have a date yet they need to coordinate the EP there with the cardiac surgeon there as well.
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)

Keith of WI

Post by Keith of WI » December 19th, 2006, 11:23 pm

Cyndie,

I just hope Jake can deal well with the trauma, as well as the rest of your family. I know as a parent you must have a huge pain of grief, the hurt me not my child feeling. I sure would! Have to be strong with him to help him know that this was just the result of the ball hitting him, not that he was trying to fit in with playing. Just a freaky kind of accident. The ICD did what it thought was the correct response. I would hope in the future more EMT's would be able to send in reports from location and stop false shocks if that is known.

Hope all works out soon.

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~guin
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Post by ~guin » December 20th, 2006, 1:07 am

My heart goes out to you, Jake and your family (pun intended).

I hope that your Holidays will be smooth and comforting and you can all breathe a sigh of relief having Jake so close to you through the Holidays.

I hope you all have a Merry Christmas, Happy New Year, and safe journey.
~guin

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Helen
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Post by Helen » December 20th, 2006, 1:22 am

Dear Cyndie, I just came on and got your e-mail and replied to you in your private messages box.I hope you got it. Please let me know. Love, Helen
Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together.

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Kathy B
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Post by Kathy B » December 20th, 2006, 8:51 am

Cyndie and Jake
I am so sorry just so darn sorry to hear about the lead. I will keep you in my thoughts and send so much support to you both. Jake your photo on the calendar is just so darn cute. I do have my calendar and whenever someone comes over I show it to them and they all remark that you are cuter than a cup of puddin. I hope you get the time slot soon and get the lead out---guess the word lead can be pronounced either way can't it. We will all be watching for information and we will all be right there by your side even though you won't be able to see us we will be there in force.
Kathy B
Four open heart surgeries
Lung surgery for paralyzed diaphragm
Seven stents
Stroke
Brain bleed
Pacemaker upgraded to ICD due to SCD episode
Multiple ablations but back in afib 24/7
Loss of my spouse Jim 6-17-2008
Meeting a new Jim
Marry Jim 9-26-2009
New ICD, Concerto and Fidelis lead removal 12-11-2009

lead

Post by lead » December 20th, 2006, 8:51 am

Even though I just had my 13 inappropriate shocks, I cannot comprehend how terrifying it was to Jake. Being new here, I don't know if he has had other therapies. If this was a first or a first at school he could be embarrassed as well as afraid. I hope this does not ruin his Christmas and that he has no problems because the devise had to be turned off. This sort of makes my problems seem less important. I will be thinking about your family and hope he is quickly restored and back in school.

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Kat
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Post by Kat » December 20th, 2006, 9:49 am

Oh Cyndie,

I am so sorry. There can be nothing worse for a mother than watching helpless while you child goes through something so terrible. And poor Jake, while we all try to deal with our fears and pain as adults, he is dealing with the same thing as a kid.

My prayers for strenght and comfort are all for you, Jake and your family right now.
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

mkc050680
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Post by mkc050680 » December 20th, 2006, 10:46 am

Poor jake - that is just horrible. I feel so sorry for you as well, as a mother that must be quite tramatic. You will both be in my prayers.

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Momof2HeartKids
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Post by Momof2HeartKids » December 20th, 2006, 11:47 am

Thank you so much for all your thoughts and prayers. I will be following up with the doctor regarding the surgery and I will keep you posted.

Last night we got the new puppy. The timing was good in a sense for the distraction but not so good in the sense that now I dont feel like I have the energy right now to put into the training, but I will. They are having fun playing with her right now. They are trying to decide on a name.

The other thing I need to deal with is the way the school handled or should I say lack of handling with everything. Once he was shocked on the playground he had to have another child get a teacher, then they had to send one teacher into the building who went and got the nurse, who then came out to him (without the AED), and then the nurse had him walk all the way to the nurses office, then they called me and I had to tell them to call 911! Uugh!
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)

marian

Post by marian » December 20th, 2006, 12:02 pm

Dear Cyndie,

you are justified to be put out with 'those in charge'. I think you should discuss it with them asap and they should have a plan. Of course they should know to call 911 immediately.
Focus on your new pet and have a safe holiday, all of you will be on our mind.

much love
marian

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Kathy B
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Post by Kathy B » December 20th, 2006, 12:18 pm

Cyndie
With regards to the schools handling of the episode, had you talked with them and set a course of action prior to this? If you did sit down with them and tell them the exact protocol to follow and they did not follow those instructions you should raise holy hell with them. If they did not meet with you to find out what to do if this would happen then they are pretty much going by what they would do for any child bumped. This will now set in concrete what they are to do and how to do it. I would think to be extra safe the AED should follow him inconsicuously to the playground from now on. I am so amazed at the lack of knowledge of people when it comes to ICD's. I guess you have to know someone who has one or have one yourself to know the drill. I have educated my kids and friends on what to do. I always feel sad teaching the 4 year old granddaughters how to call 911. I did look into the lifeline thingy but realized you always have to by the phone and how many times does that happen. What kind of pup did you get and how long till photos hit the site. Ours is 7 months and I will be training that crazy dog for a year.
Kathy B
Four open heart surgeries
Lung surgery for paralyzed diaphragm
Seven stents
Stroke
Brain bleed
Pacemaker upgraded to ICD due to SCD episode
Multiple ablations but back in afib 24/7
Loss of my spouse Jim 6-17-2008
Meeting a new Jim
Marry Jim 9-26-2009
New ICD, Concerto and Fidelis lead removal 12-11-2009

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