New to board and surgery June 28th

[cocoalab]

Hi this Is Cocoalab. I am the mom to a 15 year old boy who will be having his tricuspid valve replaced this Tuesday. He already has a St. Judes mechanical and we are hoping to replace with a tissue valve this time around. He has had this last one for almost 9 years so he was 6 when he received it. He has done a bit of growing since then . CIJanet told me about this group especially since I was asking opinions about different valves. Andrew has a CHD called CC-TGA so his ventricals are reversed along with his great vessels. He will also have pacemaker wires inserted because he is at high risk for developing heart block at any time. Just wanted to ask for your prayers and any opinions you might have concerning types of valves. We've done the Coumadin thing these past years and would love for him to have at least a few years without especially at his age. Thank you for listening.

 

[PJmomrunner]

Dear Cocoalab:

Posts like yours make me thankful it is me in the waiting room and not one of my children. I know this stuff falls into the "you do what you have to" category, but I applaud the fortitude and courage you have mustered (and continue to muster) to make such profoundly intense choices. My heart goes out to you and all the parents of patients. I hope all goes smoothly.

P. J.

 

[Jewel]

Love to Mom

Love to Mom

I agree. I go in today for an AVR tomorrow - so glad it is me! I went to a therapist for the surgery anxiety, but she ended up doing work on 'separation anxiety' with me and my kids. I can't imagine if they were going in! Many blessings to you and your entire family. This is a great website with lots of loving friends to lean on and to ask questions or bounce ideas. Best to you - Jewel

 

[Phyllis]

I always hate to read the posts about children who are about to have surgery- just doesn't seem fair! We wish you and him the best outcome and many years of good health with the new valve. Maybe they will be doing it by cathetar when he needs his next one! I will put you on the calendar.

 

[Guest]

Heh...having surgery as a child isn't THAT bad ya'll . After all, look at how I turned out .

*pauses*

Welcome, cocoalab! Where, if I may ask, will your son's surgery be done? Thoughts/prayers coming your way.


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[ALCapshaw2]

Reversed ventricals and major vessels is a rare occurrance indeed. You may want to look through posts from Georgia (or contact her directly) as I believe she has the same (or similar) issues.

'AL Capshaw'

 

[Karlynn]

Welcome cocoalab! I will ditto the other's comments on how I'm glad it was me and not my children.

I would ask (and you most likely have) asked the doctor about the length of time they expect a tissue valve to last (the younger you are, the short time a tissue valve lasts) and how scar tissue will impact future surgeries. Your son certainly has a "creative" heart - does it reflect in his personality??

Wishing and praying for the very best for your son and your family.

 

[Debrinha GT]

Hello and welcome to the site. I had my first valve replacement at the age of ten after having spent two long years in bed for most of the time. I had rheumatic fever at seven and well, thirty years ago, OHSs here in Brazil were still a big deal, and I was the first child to survive a mitral valve replacement. I've had another two since then, one at fifteen and the last one in 1995. I'm also the mother of a beautiful eight year-old girl called Bruna who was recently diagnosed with MVP, but is doing fine. You will hear many opinions about valve choice which has been discussed an awful lot here. I'll be having my fourth replacement within a couple of years and I will have yet another tissue one put in. I'll keep you and your son in my thoughts and prayers from now on. I'm sure you'll get a lot of answers to your questions on this site, as well as a lot of emotional support. Take care and stay in touch.
Débora

 

[cocoalab]

Thanks for the welcome!

Thanks for the welcome!

Thank you, each one, for your support and prayers. Andrew will have his surgery at Children's Memorial Hospital and his surgeon is Dr Mavroudis and Dr. Backer, both of whom have done his previous surgery. The incidence of CC-TGA or L-TGA, or ventricular inversion~ is .5% of CHDs. It is rare but through the internet I have met several families that have dealt with it.

Jewel I will be thinking and praying for your AVR tomorrow also. Hope to hear good news soon.

I just got a call today reschedueling his surgery for Wednesday now. On top of that his INR was too high again. He is suppose to be around 3 to 3.5 and he shot up to 4.5 from 2.2 just a couple weeks ago. It has been like this for about a year I guess. Anyways we were suppose to stop his Coumadin tomorrow in prep for a Sunday admittance and surgery Tuesday and now he won't go in until Monday for his start of Heparin. Of course I get both of these news items after I can no longetr reach the people at surgery so I had to call the cardiologist on call to find out what to do about tonight. Okay I am venting a bit. I am just a bit stressed but doing okay. I can see advantages to putting this off for a day like his direct donated blood was being drawn a little close on the time for testing purposes and like I can wait, really.

 

[Guest]

Thank you, each one, for your support and prayers. Andrew will have his surgery at Children's Memorial Hospital and his surgeon is Dr Mavroudis and Dr. Backer, both of whom have done his previous surgery.

*grins*

They did my last open heart surgery, January 2003 . Your son and I have something in common!

Good luck ... thoughts/prayers coming your way!

 

[gijanet]

Just vent away...........

Just vent away...........

You have our love and prayers. Please keep us posted.
And Cort, by the way, is one of our special heart buddies. We got to meet him last year on one of his road trips. Many hugs. Janet

 

[Phyllis]

I changed your son's surgery on the calendar and we will all have you in our prayers and thoughts, Mom!

 

[Guest]

And Cort, by the way, is one of our special heart buddies. We got to meet him last year on one of his road trips.

Aaahhh...how sweet of you to note, Janet . Many thanks. I'm speechless.

 

[Jan]

Hi Cocoalab

Hi and welcome to VR

Andrew and your family will be in my thoughts and prayers

Love

Jan