Ross procedure in pediatric case

[delvalle6]

You all are great. I have to say, I usually consider myself an intelligent person, but not in this case. I know a lot about the procedures themselves, but not the where to go or who to see. I find that no matter how analytical I try to be, the emotional side of me is on some kind of roller coaster. I have had nightmares... you know, the what ifs.. My boys are all really close, but Sammy has an identical twin- I had a condition called ttt (I had a mild case) when I was pregnant and Sammy was slightly deprived of nutrients. (they shared a placenta) I guess there is a part of me that is just as worried about Giovanni as Sammy. When one gets hurt, they both cry. When Sammy was teething, I had to give Giovanni Tylenol. They are linked in a strange way, so I feel like this is happening to both my sons.
Anyone have a cure for this "leaky eye" syndrome I've developed??
Thanks.

 

[RCB]

Seems to me, you are!

Seems to me, you are!

You all are great. I have to say, I usually consider myself an intelligent person, but not in this case. I know a lot about the procedures themselves, but not the where to go or who to see. I find that no matter how analytical I try to be, the emotional side of me is on some kind of roller coaster. I have had nightmares... you know, the what ifs.. My boys are all really close, but Sammy has an identical twin- I had a condition called ttt (I had a mild case) when I was pregnant and Sammy was slightly deprived of nutrients. (they shared a placenta) I guess there is a part of me that is just as worried about Giovanni as Sammy. When one gets hurt, they both cry. When Sammy was teething, I had to give Giovanni Tylenol. They are linked in a strange way, so I feel like this is happening to both my sons.
Anyone have a cure for this "leaky eye" syndrome I've developed??
Thanks.

Delvall,
One of the primary aspects of intelligents is knowing when to seek advice.
Crying has never been documented to be a loss of IQ, only a sign that you are human. I think you are doing a great job and I know everything will be fine.

 

[delvalle6]

Thanks. It is always good to see someone who has gone through this and made it with their mind and body intact. Everyone tells me that it will be ok. That things will go smooth. I know that, but I don't always have control over the gut wrenching fear that overcomes me sometimes. So, to deal with the fear, I research, make calls to clinics and doctors, question my health insurance and take turns holding each one of my boys tight. It's like the transition I went thorugh when I was younger and realized I wasn't invincible and I could get hurt, even die. I came to theat realization when my best friend died in a car accident right in front of me. With my son, I was in some kind of denial, like I knew he had a heart problem from day one, but it would never be serious, not my son. I had my wake up call. Now I am obsessed. When I'm not on a research rampage, I am drowning the kids in affection, and when I am alone and get to thinking, I get sad and yes, I cry.
thanks for the encouragement.

 

[Marguerite53]

You've all given me a lot of information... have any of you ever heard of Ross Ungerleider ? Apparently he used to be in Cincinnati, but is now in portland, OR. I don't have great faith in the hospital he is working at, but he sounds like he is very qualified to do the Ross procedure. After speaking to you all here, I am more convinced than ever that I should get a second opinion. In my research, I am finding that while the cariologists like to wait as long as possible, the surgeons want to proceed earlier saying that the results and recovery are better.I guess I have more research to do... I wish there was another way to repair the valve other than surgery.

Hi! Welcome to our community. I'm in the Portland Metro area (as, essentially, you are, too ) and had my surgery just this last April at Good Sam. I had a wonderful experience there. I'm sorry that your hospital experiences have been less than satisfactory.

When I first talked with my surgeon in January, I mentioned the possibility of my having a Ross (AS from BAV). He smiled and said there was only one Ross surgeon he could recommend locally, and that he was a pediatric surgeon so therefore not for me. Would you like me to check to see if it is this same doctor? My surgeon has tremendous credentials. Let me know....or PM or go to my Member page and email me.

I have 3 grown children, 23, 21, 18. I just had them all echoed this last year and they each have some nuisance heart defect... AI, MVP, and enlarged heart!! Not a one has BAV! No problems so far, gratefully.

You are being a truly wonderful mother, you know. I second RCB's comment up there. You are driven by love and advocating for your child is truly earnest and commendable. I think the idea of moving to an area close to excellent care is downright honorable of you!! I say go for it. There will be pros and cons about all of the "best" cardiac hospitals.....perhaps it's time to just listen to your gut on how to choose which one. You probably can't go wrong with any of the top 10. I'd zero in on pediatric facilities and pediatric specialties. I remember some list, recently, of the top cardiac hospitals....I'll ask my husband and get back to you......he remembers everything!

Marguerite