Rowena?

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Momof2HeartKids
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Rowena?

Post by Momof2HeartKids » September 22nd, 2006, 6:59 am

Just wondering how everything is going with your daughter and the plans for her implant???
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)

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Post by jasrowy » February 6th, 2007, 7:09 pm

Hi Cyndie, Leah has had her implant in since the day before Halloween. The surgeon tried to fit the device that they thought would do the job, struggled to get Leah into a rhythm so they could test it, then it wouldn't shock high enough to get her out of that. So they had to put in a much bigger device than planned for. Also there are two leads on her heart rather than the one they wanted on it. It is sensing really well now, there was a thought they would have to test it again, but now it's clearer they won't. She has healed well and is starting back at school today with her brother. She did have some time off after the implant, but I went with her to school to do afternoons after three weeks resting at home. The surgeon was concerned that Leah did no sports at all when we went home, so that was fun trying to keep her to sit still and heal up. There have been a few stitches come up through the main wound, and since those were cut off they have come out more, Leah didn't enjoy having them cut though as the nurse pulled really hard to get as much as she could, so we're going to wait a bit longer before we think about getting them taken out. There have been no hiccups with shocks or anything, and Leah is happy with the ICD in her tummy, even though it does stick out somewhat when she sits and slumps a bit. This is 11 days after the implant and shows the bulge. [img]<img>[/img] This was taken yesterday when Leah was flexing her muscles and shows how well it's healed, it's much lower than open heart surgery so she can get away with wearing her singlets!
[img]<a><img></a>[/img] If you can't see the photos, you can see them here soon.http://www.itsrowenasblog.blogspot.com
Mum to two beautiful children - we all have Brugada.
Daughter's ICD placed 30/10/2006.

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Post by Momof2HeartKids » February 8th, 2007, 1:10 am

Its so good to here from you, I was worried about her. Im sorry she ended up with a larger device than planned but Im glad she is doing ok now and has started back at school. Jake started back at school this week too (not sure if you read about his shock storm and surgery).

Wow she is healing great. Did they end up doing her implant transvenously or the epicardial approach, in the pics it looks like a combo of both? Im not so good at posting pics so I will try to explain Jakes... Initially his was tranvenous and he had the one larger incision like she has on her belly but just one on the upper left chest like a traditional implant - he didnt have the smaller ones running up his side they just used the top incision. This time they attached 2 leads to the outside of his heart so he has the same intial incision in the belly but then a higher one where they cut the sternum a little and then the same one again on the upper left chest and then a little one from the chest drain tube and the small tiny one from where they went in on his leg for the angioplasty that isnt even worth mentioning its so little. Ill try to post the pics when I can. We didnt do one right away but we do have one 2 weeks post op and then 5 weeks post op. Although there is nothing you can do about the bulge, Im happy for her that she seems to heal great just like Jake and hope her scars fade as well as his do. Vitamin E works great on him and my nephew has had great results with Maderma. I think when they are this young they dont have as much issue with it as the teens do.

I was checking out your blog and was reading about how your daughters teacher is a little freaked out the brugada info. Jake's have been too. I just try to remind them that this is why he has the ICD because they would have to be much more worried if they didnt. They are having a hard time right now deciding what to let him do at recess and what not to. We had a meeting with the school over how they handled his shock storm, but that is a whole other thread for another time. I am so glad she is doing well and that mommy made it through ok too - she looks great.
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)

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Post by jasrowy » February 9th, 2007, 4:18 pm

Hi Cyndie, sorry to hear Jake has had issues with the ICD. I haven't had time to do much on the computer lately, that's why I only responded recently. What are these 'storms' and do you know why they were occurring?? I had read a while ago that Jake had yanked on his lead while cycling? Is that right? Is that maybe why the storms were happening? Iwish you all the best in this year and years to come with dealing with this illness and all the stuff that comes with it.

With Leah's surgery, they made the incision low down so they could place the ICD in the abdomen, and then go upwards in the same incision to make a 'window' to her heart to place the leads outside the heart. One near the top and one nearer the bottom, (she was going to have only one lead, but when they had problems with the charge from the ICD they placed two leads instead), which I assume are glued/stitched in place. Then the wee incisions up her ribs were to pull the coil part of the ICD through so it sits up top left above her heart. There is one wee scar in her armpit (which happens to be the faintest of the whole lot) that the surgeon told me she didn't have to do, but it doesn't matter anyway you look at it. Is that similar to Jake's first placement, I think they were similar in size too. Leah was 18 kgs, but lost 1 kg after surgery and is still putting that back on months later. She has grown taller though, so it's not like she's not growing!

Thanks for the reply, it's nice to hear from other people going through similar experiences - most people look at us like we're aliens or something. The school had an emergency meeting on Thursday without inviting me or a doctor, and worked out what to do if Leah does collapse at school. They'll ring an ambulance and perform CPR where necessary. Gee, why did it take a roomful of teachers to work that out!!! Anyways, I'm off to enjoy our weekend! Happy days...
Mum to two beautiful children - we all have Brugada.
Daughter's ICD placed 30/10/2006.

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Post by Momof2HeartKids » February 17th, 2007, 5:11 pm

are these 'storms' and do you know why they were occurring?? I had read a while ago that Jake had yanked on his lead while cycling? Is that right? Is that maybe why the storms were happening?
His litle quad accident may have contributed but what happened was he was hit in the stomach with a ball and it put a fracture in one of his leads and the ICD read it as him being in a bed rythm and began to shock him. 13 times in one hour.
which I assume are glued/stitched in place. Then the wee incisions up her ribs were to pull the coil part of the ICD through so it sits up top left above her heart.
When they attach the leads to the outside of the heart they either use what is called epicardial patches which are patches at the ends of the leads that are sutured to the heart muscle or they use the type of leads that are traditionally used when they place the leads inside the heart, there are variation, but they basically screw into the heart muscle.
Is that similar to Jake's first placement, I think they were similar in size too.
Actually with Jake's first placement they put it in his abdomen, tunneled the lead up under his skin from the abdomen using a newer technique that allowed for them not to make the mutiple incisions up his side, and then they made an incision up at the top of his chest and his lead went into the vein there and was inside the heart. This time around he has the two leads on the outside of the heart.

We are going through the same thing with the school right now because of how poorly they handled Jake's incident - like calling me instead of 911! I cant belive they didnt have you at the meeting. You should definately have a voice, as well as the docor, in how they handle an emergency situtation with Leah. Have they restricted her physical education or any activities??

I wish you the best! Are they still thinking about you son getting one too?
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)

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Post by jasrowy » February 25th, 2007, 5:51 pm

Hi Cyndie, sorry it takes so long for me to look at this board, but here I am now. Leah isn't being restricted at school at all, in fact I told her teacher that she needs to keep moving at school wherever possible as Leah hates to sit still when others are allowed to move. She's even allowed to do swimming lessons which are coming up in March sometime, my cardio said she could swim, so no holding back there either. John will be tested again near puberty (which is only a few years away!!) to see if he can easily go into the pattern with an elecrophysiology exam. Then they may place a device when he's nearer to being adult size, so perhaps 15, 16 or so. We'll see how it goes when all that happens. He wants one in him so he "doesn't wake up in the morning dead", which I've tried to assure him about. We are getting on with each day as it comes and enjoying the days out of hospitals immensely!
Cheers, Rowena.
Mum to two beautiful children - we all have Brugada.
Daughter's ICD placed 30/10/2006.

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Post by Momof2HeartKids » February 25th, 2007, 6:41 pm

Well Im glad Leah is doing well and has no restrictions. That is great. Im also glad you have a while to wait for John and hopefully he never needs ones! How are you doing?
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)

jasrowy
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Post by jasrowy » March 2nd, 2007, 2:53 am

Hi Cyndie, I haven't had an episode since July 2003. Though that's when my chest pain started, been through as many tests as the hospital can think of and no one has any answers. I just think if it's going to hurt me enough to damage then so be it, but otherwise I try to tell myself that the pain won't kill me. My life hasn't personally changed that much since finding out I have Brugada, but dealing with dental issues and how it affects the children is certainly not something to laugh at. But sometimes that's all you can do isn't it? Or cry, but that's not much fun really if it's all the time. I have recently separated from my husband, who is the children's father, and actually feel free for the first time in ages. The children and I have accepted our new family group quickly and do lots of stuff together that we couldn't before.
Anyway, I'm rambling now, take care and be strong.
Rowena.
Mum to two beautiful children - we all have Brugada.
Daughter's ICD placed 30/10/2006.

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Post by Momof2HeartKids » March 2nd, 2007, 8:36 am

Hi...Im sending you a PM.
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)

Tenny
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Re: Rowena?

Post by Tenny » July 5th, 2013, 5:05 am

This time they connected 2 results in the outside of his center so he has the same intial cut in the tummy but then a greater one where they cut the breast bone a little and then the same one again on the greater remaining chest area and then a little one from stomach area strain pipe and the little small one from where they went in on his leg for the angioplasty that is not even value referring to its so little.

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Re: Rowena?

Post by Mary Kay » July 5th, 2013, 2:58 pm

Wow! You all are going through so much. The principal at my school has a son in his early 20s who has had an ICD since being quite young. When I got mine and talked to her I was surprised at how much she didn't know. Obviously you are very different kinds of mommas and I am very impressed.
We also have a student at my school with an ICD. The District assigned a person to be on campus for him so that there is always an adult when he isn't in class. He has been taken to the hospital 3 times from school. His mom was in complete denial at first and I think she still isn't dealing with it proactively as you all obviously are. Apparently, he really needs a heart transplant.
Here's to great mommas!! worshippy worshippy
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
Carvedilol 12.5 mg 2x
Ramipril 5 mg 2x

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