ICD placed Monday 4/22/13 some questions

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cdpetero
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ICD placed Monday 4/22/13 some questions

Post by cdpetero » April 26th, 2013, 10:15 pm

Hi. I am new to the group. My son had an ICD placed Monday at Cincinnati Children's by Dr. Czosek. We live in NC and have just arrived back home today. A couple of things make me nervous: Risk of infection and not being able to raise the arm above the shoulder. Do any of you have advice on how to prevent my 10 year old from raising his arm while he sleeps? So far, I have been staying up at night while he sleeps making sure he doesn't accidentally raise his arm in his sleep. Obviously, I can't do this for 6 weeks. Any advice on how to keep his arm down during sleep is appreciated!!! Also, any other advice regarding the ICD, etc. is greatly appreciated. oh, one other question: how long did you keep your child out of school? what precautions did you take when you did send them back to school?
Thanks!
:)

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Eric
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Re: ICD placed Monday 4/22/13 some questions

Post by Eric » April 26th, 2013, 11:33 pm

I know when I had my surgeries they gave me a wrist band that strapped around my waist that would not allow me to lift my arm over my head when I slept. The other option is to also use a sling. However if he uses a sling, make sure he gets his arm out and moves it around during the day so he does not lock his arm up.

Wishing him the best.

Eric
Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
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VT episodes starting in August 2012
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freckles1880
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Re: ICD placed Monday 4/22/13 some questions

Post by freckles1880 » April 27th, 2013, 7:51 am

Eric is correct. He should NOT move the arm above his head but does need to move the arm while below his head. We don't need to hurt the shoulder from non use. I also used a sling at night, against my EP's advise, with nurse approval. I was told to not use it during the day. Going to school should not be an issues as long as he follows the guidelines. Most of us have not had issues with infections at the site. Again we do need to follow the recommendations on how to, or when to, clean the area. I believe that most of those who had an infection the infection was caused by something other than how they cleaned the site. He does need to heal but also needs to be a kid who gets attention while he is healing. Most kids love that.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

Mary Kay
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Re: ICD placed Monday 4/22/13 some questions

Post by Mary Kay » April 27th, 2013, 12:50 pm

I discovered that if I used part of the sling to wrap around my waist to keep my arm to my side. I think I used it in some combination with the sling but I don't remember. It kept me from putting my arm over my head. My EP suggested a tight long tee shirt and don't put my arm through the sleeve, I woke up with both arms above my head and the tee shirt around my neck. That didn't work.
CHF, Cardiomyopathy and LBBB
EF 20%
St. Jude Bi Vent ICD CRT implanted September 9, 2011
7 shock storm inappropriate due to dislodged lead
damaged lead removed and replaced Sept 26, 2011
EF improved to 50% in December 2012
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freckles1880
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Re: ICD placed Monday 4/22/13 some questions

Post by freckles1880 » April 27th, 2013, 3:36 pm

oppsies Sorry I did not welcome you and your son. So howdywelcome . Please do let us know how he is doing.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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ricatlga
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Re: ICD placed Monday 4/22/13 some questions

Post by ricatlga » April 28th, 2013, 11:31 am

Glad that you found the list. I tend to be a sleeper that wants to put my arms up under my head when I'm on my side. So I needed a way to keep it down. The sling worked for me during the night. I did not use the sling during the day except for when I needed sympathy. :D
Raymund
Mitral valve repair Dec 2007
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Ablation May 2012 - Sotalol discontinued in September

cdpetero
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Re: ICD placed Monday 4/22/13 some questions

Post by cdpetero » April 29th, 2013, 3:02 pm

Thank you all for the replies and suggestions. Mary Kay, we also tried a t-shirt and he attempted to wiggle out of it in his sleep. Eric, I love the wrist band idea. They did not give us anything like that at the hospital. I will try to find one online or at a pharmacy. We are currently using an ace bandage but if he moves enough in his sleep, he can loosen it and then move his arm. He is very cautious during the day. He prefers to wear a sling but we make him take it off periodically throughout the day. I think he is afraid he will forget and raise his arm so he wears the sling as a reminder. He has a follow up/ wound check May 15, so he will not return to school before then. He does love school though, if he didn't I think I would homeschool him until summer! I'm so nervous about something coming loose before hes healed. Did any of you accidentally raise your arm before the 6 weeks were up? if so, what happened? did the lead come out? were you inappropriately shocked?
Thanks,
Danelle

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freckles1880
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Re: ICD placed Monday 4/22/13 some questions

Post by freckles1880 » April 29th, 2013, 4:12 pm

cdpetero wrote: Did any of you accidentally raise your arm before the 6 weeks were up? if so, what happened? did the lead come out? were you inappropriately shocked?
Thanks,
Danelle
You can bet many of us did. The first thing I did was panic but was fine. Usually it dies not harm us but there is a very good reason for us the keep that arm down. Some of us did some damage.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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Suzanne
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Re: ICD placed Monday 4/22/13 some questions

Post by Suzanne » April 29th, 2013, 7:14 pm

Hi Danelle :D

I wouldn't let him wear the sling in the daytime. From what I've heard and read, he needs to move his arm so he doesn't get frozen shoulder, which I hear can be very painful.
I really don't think you need to be too concerned if he raised his arm accidently before the six weeks.
Lead dislodgment doesn't happen very often, thankfully.
If it would make you feel better, you should call the ICD clinic and ask them a few questions, let them know your concerns. I'm sure their replies would help put your mind at ease.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

Mar
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Re: ICD placed Monday 4/22/13 some questions

Post by Mar » April 30th, 2013, 9:28 am

I also used a sling at night for a short time. It was uncomfortable to sleep for awhile.
As far as raising the arm before the six weeks, yes I did catch myself doing that but all turned out just fine.
Mary Ann (Mar)
Biotronic Lumax 540 DR-T implant May 2010
Open heart surgery Jan 2010
ICD implanted May 2010
1 shock in 2011
3 in 2013
current EF 10 to 15%
A Fib
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Smartredd
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Re: ICD placed Monday 4/22/13 some questions

Post by Smartredd » April 30th, 2013, 10:40 am

I like the idea of a wrist band tied to a waist band that Eric received.

What I did was crochet a wrist band with a 'leash' and attached the leash to my belt loop. This allowed me to use my hand and arm as much as I wanted, but prevented me from reaching up too high. The contraption did as much to keep me from trying to reach up and it did physically prevent the action.

Some have experienced serious pain from Frozen Shoulder - a condition that can arise from not using the hand, arm, and shoulder during the 6-8 week recovery period. Your son needs to use his arm in his daily activities as much as possible while keeping his arm from raising too high.

Like many here I didn't use my sling after getting home from the hospital. I found that using both hands was easier and healthier than trying to baby the left one.

Hugs and best wishes!
Love, Smart Red

cdpetero
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Re: ICD placed Monday 4/22/13 some questions

Post by cdpetero » May 3rd, 2013, 10:23 am

I really appreciate the replies! This is new and so scary. I know once the recovery process is complete, things will get easier and Nick will have the proctection he needs with the ICD. I am very nervous about sending him back to school before the 6 weeks are up. They switch between teachers and I'm afraid in the shuffle he will get bumped. His main teacher is not the "best" (I'm trying to put it nicely) and I don't trust her to properly watch after him or see to it that he has the assistance he may need.
I think we have found a good night time set up. I sewed a sleeve of a long sleeve button up to the front of the shirt. It seems to hold in place pretty well. We still use the ace wrap with it though for extra protection.
I will try to figure out how to post a picture of Nick on here so you can see my brave guy! :D
Thanks,
Danelle

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freckles1880
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Re: ICD placed Monday 4/22/13 some questions

Post by freckles1880 » May 3rd, 2013, 2:20 pm

cdpetero wrote: I will try to figure out how to post a picture of Nick on here so you can see my brave guy! :D
Thanks,
Danelle
On the "Board Index" section you will find "walking through board functions" this is the link.

viewforum.php?f=4

There you can find how to do all kinds of cool stuff. I do use the photo bucket site to place my pictures.
wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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