Met surgeon, not so good news.

[Dina]

I think I see why the surgeon wants to wait , since your son still has some
growing to do,its probably the right decision. It is wonderful to have a
surgeon that you feel positive about and it sounds like you have a good one!
Best Wishes to you and Curt-Dina

 

[Lynlw]

Hi Paula, I'm sorry I didn't see this earlier, Sigh, I can imagine how you feel, but like others said after waiting soo long to talk to the surgeons it must be a relief to have a plan. I really can understand where you are coming from 2 of Justin's surgeries were when he was 18 months and 10 like Curtis. I'm sorry I can't offer any helpful advice on preparing a 10 year old boy for having surgery tho, because Justin went in for a cath just to look around and ended up needing his surgery the next day, which was shocking at the time, but looking back was also kind of nice in a way not having to think about it too long (or better yet trying NOt to think)
I'll keep you in my prayers and if you ever want to talk or vent please email me at [email protected], because I don't get here as often as I used to. oh email me anyway I want to show you some pics Lyn

 

[gijanet]

Paula ((hugs))

Paula ((hugs))

Paula, I know what you are feeling, but I think with ped surgeons they all want to attempt repairs first, even if it means just buying a few more years before implanting a valve. That was Dr. Bove's plan for Katie, too. I hate to mention it, but I know you already know our repair didn't hold up. But Katie's valve was really misshapen, since it was her common atrioventricular valve, and myxomotomous to boot. They just really want to try and buy the kids more coumadin-free time. One of our roomies during one of our stays had her mitral valve replaced. Dr. Bove had repaired it when she was one year old, I think, and so bought her another five years without coumadin. That is what we were hoping for, at a minimum.......................oh, well. So now we are about to celebrate our three year valversary.

And, just think, some repairs last for a really, really long time, so that is what we will be praying for for Curt. And, yes, they are making advancements every year with valve replacements, so who knows? This may be Curt's last crack the chest surgery anyway. You have our love and prayers. Janet

 

[R&N Brown]

Hello Paula

Hello Paula

I am new to this, although, I am a living example that fixes at a young age can last, at least in my case, 40 years.

I don't remember a lot about the details because of my age, My doctors of today tell me I was born with a unicuspid valve. At age eight it was repaired in some fashion and has held up for four decades. I have never been one to sit on my hands either, until the last year or so, by my activity level you would never know I ever had an issue.

Keep the faith, good things can happen.

Rob

 

[EireCara]

Paula, like you I hadnt thought of the fact that by the time Curtis needs another surgery things will more than likely have moved on, I was delighted to read that, (thanks to Jkm7) so I can only imagine how it had helped you, even if just a little.

Please remember I am keeping you, Curtis and your family in my prayers. x (((((HUGS)))))

 

[Curtsmum]

Thanks again everyone,
At first i couldn't understand the point of going threw it all again but know i realise that it could turn out to be a good thing.
Curtis as been living for the last 8 years with a failed mitral valve repair, so if we could make that again, he would be 18 and like you all say who knows what the future holds. I am feeling better about that bit and scared for the up coming surgery but i would feel a lot worse if i didn't have you guys to turn too x