A little quick story

[Granbonny]

My age 11 year old grandson is spending the weekend with me. I live in a gated community in North Ga. Mountains. We have a large community pool. His Papa took him down to swim and I went down an hour later. was raining and asked hubby..wheres Kameron. He said in gym playing with some boys his age who had come up for weekend birthday party...at Grandmother's house. I looked and knew her so went over and talked to she and daughter. They had 5 boys same age as Grandson..running and shooting basketball. and whooping and hollaring..like all boys their age do. I noticed one boy had a long scar on his chest...the sun came out and we went back to pool..where they flipped and ran and dived..and played soooo hard. Then it was time to go home and my grandson and this boy came up to me and my grandson said..Look, Granbonny Shaw had open-heart surgery, too. And Shaw was leading the pack about flipping upside down, ect.....What a kid. I told him, we are twins..we both have zippers. He laughed. Going back down to pool at 9 p.m. so for all newbies..take heart. Life goes on.Bonnie

 

[bvdr]

Another quick story:

I was in our local department store looking for some of the type bras recommended by our lady valve veterens and the sales lady came over and volunteered to help. She immediately picked up a box and said "this is the one I used after my valve surgery". It turns out she had AVR about 8 months ago up at Duke but with a different surgeon than mine. She looked great.

 

[Ross]

During my extended vacation in the sunny CSICU last year, among all the emails Steve brought for me was one from a friend who's son had OHS about a year before I did. I couldn't help but cry at what he had written. I'll have to find it and post it, but he more or less told his mom that he and I could talk because we know what each other knows and that no one except us heart people would understand. That really got me! We all know he is 100% correct and he is only 12 now.

 

[hensylee]

Shortly after my surgery, I was sitting in WalMart glasses section and a man walked up to me and said 'what are you doing with that scar?', pointing to my leg. I thought he had a nerve til I looked up and saw where he was pointing - to his own leg where he had a fading scar just like mine. Ours was bypass, not valve, But they are everywhere if you just look. Nobody has to say a word, they just know.

 

[Granbonny]

Boy with the scar

Boy with the scar

The boys are going to meet at 10 a.m. for fishing. He is a guest..I am going to ask my friend when he had open-heart surgery? His scar ran the entire length of his chest. Also, saw tube scars. He is age 10 and the stamina he had was unbelievable playing basketball and flipping in pool, ect.....so the operation had to have been later in life..as long as it is..kids can really bounce back. His parents must be very comfortable about letting him go off for a weekend and letting him get on with life. Bonnie

 

[hensylee]

I think it is a wonderful story, Bonnie - that two people like you and he can meet accidentally like this. I am glad that his health is so good and that he is able to do things just like the other boys. Seems he is taking it in stride. And that his parents apparently are, too. Thanks for sharing this story with us. It will be one to share with newbies who are afraid, won't it. "And a little child shall lead them".

 

[Gnusgal]

I know that when I was a kid it was VERY difficult for my mom to let me go and do "normal" things with the other kids. But she forced herself to do it because she wanted me to lead as normal a life as I could. I got to go away to summer camp 7 years in a row and you better believe she was nervous as anything. But I truely believe that it is her attitude that has helped me deal with all of this "stuff" as well as I have.

I have a student who is 12 and had OHS when she was 5 (valve replacement). She does not like other people knowing she has had OHS. Well, her friends know, but she is embarassed about strangers knowing. I have made sure to mention my heart problems several times in class so she can see it doesn't have to be something to be embarassed about. I hope I'm helping. I met with her mother once, just to talk, and I was very surprised by her. She does not fully understand her daughter's condition, and leaves it up to her husband to talk with all the docs. She is afraid to tell her daughter that she will need surgery again soon (she has a pig valve) to replace the valve. She's very protective of her daughter (which is fine, to a point) and spends the first couple of weeks of school making sure that all her teachers are fully aware of her situation (she also has some learning disabilities as well). However, unlike I did, she takes PE and is told to pace herself. But I've seen her come in from PE completely wiped out and know she pushes herself too far sometimes (I would have been the same way I'm sure).

I hope I am a positive influence on my student. Several days after I told her that I had heart problems and surgery too, she came to me to say thank you, and that it made her feel better. I had her last year, and again this year. Hopefully she will take my class again as an 8th grader as well. If I had known someone else with heart problems like mine (not just adults who had heart attacks) I would have felt SO much less alone.

Anyway, I guess I'm just rambling, but I thought I'd share a bit of my observations about parents of kids with CHD.

 

[McCln]

gnusgal

gnusgal

Most kids, no matter what decade surgery is done, is always a scarey thing. I had no one to look up to when I had my first, which was a repair on the aortic valve. So I am proud of you sharing your experience with your student. It has made an incrediable impact on her that when having surgery, that there is a future after. You did good. Keep helping her, you are certainly blessed. You be good, keep on doing good work as a teacher.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Granbonny]

Shaw

Shaw

The age 10 year old..we met again at 10 a.m. and they swam until 12:30..Same thing..diving and playing games and not once did I see him slow down...where one of the boys was a little over weight and could not stay up with the other 4......My friend's daughter is a Veterinarian ( and she said ..Shaw's mother trusts her to take him off for overnight. Shaw's first surgery was when he was born and has had 3 more since... The lady said..his heart and lungs were all messed up..very confusing to me..but he just looks great. He has had all his surgeries at Egleston Children's Hospital in Atlanta....his Grandfather built this gated community in 1975 and has built many more in the North Georgia area..so ..I'm sure he is in the best of hands. The grandmother ( my friend) who was hosting the party told me..he has to have 2 shots everyday and watch some foods that he eats...I only noticed that his back looked like muscles were different than other boys. He and my grandson shared telephone numbers. live in same town Gainesville, Ga...but different schools districts....Love success stories with children like him Bonnie

 

[maxximom]

Kids are just amazing!! My Granson , now age 10 was born with really complicated congenital heart defects. He was born with a single Ventricle, Transposed Great Arteries and Pulmonary Stenosis. Any of these heart defects are life threatning..all three..well you can imagine. My daughter and Son In Law brought him home at 10 days old...which was amazing in itself. My daughter researched evrything she could and became an "expert in Ian's condition. Ian had his first of 3 surgeries at 10 months of age at Childrens Hosp. in Oakland Ca. It was very touch and go. The following year he had his second surgery a Glenn bi-directional shunt and had a number of complications following it the nastiest being o Chylocentisis which reqwuired a totally fat frewe diet fo many months the last operation and the most critical for survival was a operation called a Fontan..which was very dangerous. He handled that one beautifully. You can imagine the numbeer of "zippers on his chest. My daughter had been told that Ian would probably always be "small" and tire easilly. They forgot to tell that to Ian.. At age 10 he is one of the biggest kids in his class and is a perpetual motion machine. He has no restricion with the exception of no rollar coasters or things that have strong "G forces" He does seem to get some shortness of beath is he had to run fast. Other than that he is a normal active 10 year old. In a two weeks he will be going to a children"s Cardiac Camp on Catalina Island for 5 days.. he will have a chance to meet other children with "zippers" without feeling self concious. He has often answered quuestions when he has been appraoched by other children and adults as well as to the "scar" on his chest, with amazing maturity. He has admired my "zipper" and my husbands "zipper" as well. I think that he figures it's a family thing. It was sad though to hear him at age 6 after my husbands surgery to ask "Grandpa are you on Coumiden?"
These kids are wonderful and resilliant and the poarents who have to go through the ordeal of having a child go through so much are just amazing as well.
Joan
AVR,Triple Bypass Duke Medical Center Sept.25 2001
St Judes Torronto Stentless Porcine Vale..Dr Donald Glower

 

[Granbonny]

Max Mom

Max Mom

One thing really stood out about Shaw.. His Personally was so great.. When they played the games boys play in pool..he was the first one to say..Oh ? won (the little overweight boy) so he wouldn't feel badly.. The Dad..father of boy having the birthday party..would organized different dives..Funny dives, ect. Of course the boy (overweight) Dad would say. he won..and NO boy would argue. And who said. this generation of children are not aware of problems facing them in future. MY Grandson has many Mexicans in school with him ..Gainesville, Ga is a huge chicken processing..Tyson, ect.)...They have a Private school ( which I could afford to send my child too) and Shaw's Grandfather is probably the most wealthy man in North Georgia....but I decide a long time ago. My child is going to Public schools.. And Shaw is also in public school. They all wear same uniforms..Blue, red or white shirts with collars and blue or beige pants... There is No discrimation between races. There is a big banner outside my child's school that says. Georgia School of Excellence. We leave No Child is left Behind. PLUS..my Granson speaks Spanish ..Leave them alone and they are Great.. Bonnie