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Post by Valerie on Aug 8, 2005 16:53:57 GMT -5
Hi, welcome to the site! Although I don't have any info on docs in SC, my son also had heart surgery, as did a lot of the other kids from here. If you have any questions about the surgery itself, I'm sure we'd all be happy to help!
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Post by Valerie on Aug 8, 2005 17:45:12 GMT -5
We went to DesMoines, which is an hour or so from where we live. His Dr is a cardiologist, not specifically for DS, but Nicholas had AV canal defect, which is very common with DS, and his cardiologist and surgeon had worked with a lot of kids with DS because of this.
I know it worries you to death, but the kids are SO MUCH BETTER after...and you will be so relieved when it's behind you!
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Post by Chris on Aug 8, 2005 20:41:27 GMT -5
Diane,
First, congratulations on your little girl! I am sure she has multiplied the love in your family. I think if you go to a large children's hospital, the surgeon probably has had lots of experience with heart repairs on kids with Ds. I don't know of any heart surgeon who specifically specializes with kids with Ds.
My daughter had her heart repair (AV canal, ASD, VSD, PDA) on her three month birthday. While she was in the hospital, there were four other babies with Ds getting their hearts repaired. She had her repair at Children's Hospital of Michigan by Ralph Delius. Henry Walters did most of her after care. Her heart looks and sounds great. She doesn't even have a slight murmer. What a difference!
Chris
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Post by Debi on Aug 8, 2005 22:27:43 GMT -5
It is SO natural to worry but I think it sounds like your docs will be very good. Pediatric cardilogists tend to be amazing!! This is the hardest part~~waiting for the surgery and going through the surgery. But most all our kids who have had cardiac repair have done really really well so try and keep focused on that if you can!! Valerie just curious.... who was your cardio in DSM? Gabe was followed by John Gay who I believe has since retired but was SO well regarded. Gabe ended up having his VSD repair in Iowa City and that went VERY well.
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Post by Valerie on Aug 8, 2005 23:17:34 GMT -5
Debi, his cardiologist is Dr. Chandramouli, and the surgeon was Dr. Hockmuth. The surgeon wasn't too big on bedside manner, and lots of people told us that at the hospital, but they also said that if their child was having heart surgery, they wouldn't want anyone else to do it! So, I would rather have a GREAT surgeon than worry about the nicities! Dr. Chandra is VERY good with kids!
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Post by Evans Dad on Aug 9, 2005 14:04:01 GMT -5
Welcome - our son had heart surgery at 3 months old - he is now almost 3 and is doing great. It is scary, but this area of expertise is just great. If you are interested we took some pictures post surgery of Evan, as do most parents. We had some pictures sent to us before Evan's surgery, and although kind of scary we were well prepared for the post op scene. If you are interested, email me at swanny297@yahoo.com and I can send you some.
Congradulations again Clint Swanson
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Post by willsdad on Aug 9, 2005 17:05:19 GMT -5
Welcome to Uno Mas! Our baby had heart surgery when he was 4 months old. At Arkansas Children's Hospital, part of the pre-surgery tour included a visit with a Child Life Therapist. She showed us pictures, and even used a doll complete with all the post-op wires, tubes, etc. to show us what to expect. I know that helped us to be prepared for the first time we saw Will after surgery. It also helped to get some encouraging words from other parents that had already been down this road (like Clint). Keep us posted, and we'll be praying for Mary Ellen.
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Post by Valerie on Aug 9, 2005 22:09:22 GMT -5
No second opinion here. Our physician was highly recommended, and very well known around here. Also, there was a pretty LARGE hole that showed up on the echo. And finally, he was pretty sick with CHF when he was tiny. Panted like a little puppy and could barely get him to eat. There was no question that he needed this done.
To look at him today, you'd never know that he had a heart defect or surgery. The change afterwards is just so amazing!
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Post by willsdad on Aug 10, 2005 8:44:25 GMT -5
We did not get a second opinion, as we felt very confident with our medical team. Let me assure you that the cardiologist and surgeon (most likely with input from their colleagues) will review ME's echos and chest x-rays thoroughly prior to surgery. With another intensive sedated echo just before surgery. They want to make every effort to know what to look for during surgery so there are no surprises. That said, I don't think there's anything wrong with you requesting another set of eyes to take a look at your baby's heart if it will make you feel better. Tell Mary Ellen we are all praying for her.
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Post by Staci on Aug 16, 2005 9:53:21 GMT -5
Both my son and daughter have had heart surgery. Aidan, my son with Down syndrome, had his at 8 months old, he had a VSD. His siter, Parker, had surgery when she was 8 months old, she has Tetralogy of Fallot. We went to Children's in Kansas City, we didn't get a second opinion, we felt really safe and comfortable with the hospital, the surgeon, the staff, etc. Everything turned out great for both of them, still very happy with our decision. I wish you luck and if you have any questions at all, feel free to message me or email! I can give you the link to Aidan's website, which has pictures of him after surgery, etc. And Parker, too. When will your daughter's surgery be, do you know? Good luck! My email: lanea24@hotmail.com
Staci
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Post by dannysmom on Aug 16, 2005 19:33:29 GMT -5
Hi,
My son just had his heart repair surgery Aug 5th at Boston Children's Hospital. If I can be of any assistance, please email me. I would be more than happy to share our experience with you. I know exactly how you feel now. I posted a message quite like yours prior to my son's surgery. Let me just tell you, before surgery he barely drank 12 ounces a day. Now, just 11 days after, he drank 21 today!!! Please feel free to email me. Best of luck, you are in my prayers.
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