I think alot of the CHD surgeons dealing with complex CHDs probably don't spend alot of time discussing the various valves ect, because out of ALL they do in the orginal surgery/surgeries the valve is a pretty small part of it. It amazes me how they are able to do so much work on newborns and toddlers especially when you consider they are working on a heart the size of a walnut, I can't imagine how teeny tiny all the parts must be let alone the stitches. Do you really understands the 4 parts that make up TOF and what the surgeries do? I had the hardest time wrapping my brain around exactly what they did to Justin's heart when they rebuilt alot of things and rerouted the blood,(during his 2nd surgery the Rastelli) I knew all the words for his defects and what they did in the OR but couldn't really understand comletely what that meant until I looked at the diagrams over and over (and compared them to a "normal" heart. but there is a really good book that explains alot of the CHDs and surgeries available that was written for parents and adults with CHD to understand. Altho alot the surgeons modify the repairs for individual heart (like Justin's had a "modified Rastelli" )so Chris heart probably doesn't look exactly like the diagrams, but if you are interested they are a good place to start. I think they are out of copies right now, but you can read and download it or the chapters you need online, My husband actually carried a copy in his work bag because he found it easier to explain what needed done to people with the book. http://www.childrensheartfoundation.org/publications/itsmyheart.html
Questions about post-op meds
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I think alot of the CHD surgeons dealing with complex CHDs probably don't spend alot of time discussing the various valves ect, because out of ALL they do in the orginal surgery/surgeries the valve is a pretty small part of it. It amazes me how they are able to do so much work on newborns and toddlers especially when you consider they are working on a heart the size of a walnut, I can't imagine how teeny tiny all the parts must be let alone the stitches. Do you really understands the 4 parts that make up TOF and what the surgeries do? I had the hardest time wrapping my brain around exactly what they did to Justin's heart when they rebuilt alot of things and rerouted the blood,(during his 2nd surgery the Rastelli) I knew all the words for his defects and what they did in the OR but couldn't really understand comletely what that meant until I looked at the diagrams over and over (and compared them to a "normal" heart. but there is a really good book that explains alot of the CHDs and surgeries available that was written for parents and adults with CHD to understand. Altho alot the surgeons modify the repairs for individual heart (like Justin's had a "modified Rastelli" )so Chris heart probably doesn't look exactly like the diagrams, but if you are interested they are a good place to start. I think they are out of copies right now, but you can read and download it or the chapters you need online, My husband actually carried a copy in his work bag because he found it easier to explain what needed done to people with the book. http://www.childrensheartfoundation.org/publications/itsmyheart.html
cherylchapa
Well-known member
It's not that I don't understand all they did during the surgery. I have seen enough diagrams to really get it. I've been explaining it to people for 10 years now. I think I have a pretty good grasp of the particulars.
What I don't get is why I was told on several occasions that my son was doing fine and would most likely not need any more surgical interventions. Fast forward 10 years later and I find out that 75% of tet babies with a full repair will have to have a valve replacement in their teenage years. AND Chris's valve is in such a bad state that it needs to be replaced before his 11th birthday! What?!
I've also been told over and over again that the major illnesses that he has had over the years have had no correlation with his heart problems. This boy is only 10 and he's had pneumonia twice, RSV many times, rotovirus, scarlet fever, and almost died from bacterial meningitis. Dr. Weiner has said that he probably has an increased susceptibility because of his heart problems. Duh! Finally somebody listened, addressed my concern, and told me the truth!
The reason I'm having a problem trusting doctors right now is the fact that we were so ill-prepared for this. If I had been told that he was going to degenerate and need more surgery later on, I would have been more pro-active about his cardiac care. I would have insisted on more tests. If These cardiologists had taken the time to do the tests necessary, they would have seen the problems long ago. Had do you go 10 years with pulmonary arteries the size of a one-year-old and nobody picks that up?! Thank God Dr. Weiner did the cath or we may never have known.
I just pray we haven't gone too long and his heart isn't too far gone. I have this horrible feeling that the other shoe is about to drop. I hope that doesn't sound melodramatic but that's how I feel right now.
Diane
Well-known member
Cheryl,
I am a 1st generation TOF survivor.....I had the 50th anniversary of my TOF repair earlier this month. I totally understand why you are shocked and upset. I was fortunate in that I had a very good result from my original surgery and had no real problems / complications for most of my life. I actually went 45 years being told that I was fixed, fine, and would not need another surgery. Then 5 years ago, BAM!! I was told that I needed my pulmonary valve replaced and that I was at high risk for an episode that would cause sudden death until I got it fixed! Say What?!!!
The thing is, they really just don't know a lot of this stuff yet. The truth is, we are breaking new ground every day. So many of us were told that we were fixed, that we all went on our merry way and dropped out of care completely. We only came back to care when we had major problems. No one has ever studied us and what problems / complications we have. Even those that stayed in care were not studied and the problems / complications associated with the original repairs have not tracked. Your son's doctors told you what they thought to be true based on what little they knew from my generation. The coorelation between pulmonary valve replacement and TOF repair has only been made in the last 10 years or so. Today, they are steering docs away from telling parents that their child has been "fixed" but it takes some time for everyone to make the change in their thought processes.
I would like suggest that you join up with Mended Little Hearts in your area so you could connect personally with other parents going through the same things with their children.
The Adult Congenital Heart Association has been diligently working for several years now to get funding for a National CHD Registry through the NHLBI so we can start learning more about CHD outcomes / problems / complications for your son's generation and his son's generation. This year, they partnered MLH with several other CHD groups to form a CHD Coalition. Thanks to everyone's efforts the Congenital Heart Futures act has been introduced in the US Congress. This act will help fund CHD research and the CHD Registry. Now we need to get enough support for the bill to pass through both houses. If you are interested in helping by writing to your representatives to ask them to support this bill, please let me know and I will get the information to you.
~Diane
RI Mom
Well-known member
Cheryl,
I was in a similar position as yours because, like you, I was told that my son would "probably" not need any further surgery after his initial repair as an infant. While I continued to take him for regular checks with his Cardiologist, I relaxed a lot about his CHD. So to my surprise a few later....boom....it's looking bad and now we need to replace the mitral and the pulmonary. It was then that I knew that I was a "heart mom" for life and that my child would be a heart patient for life as well. It was that 2nd surgery that pushed me to educate myself more about my son's CHD and the book that Lynn mentioned "It's My Heart" was a terrific resource. I can send it to you if you wish. My hospital actually gives it out to new patient parents.
As far as the medic alert bracelet......well, Idrees takes an anti-coagulant. His Cardiologist actually suggested that I NOT get him a bracelet because it will make him "stick out" and feel different and also because he was always in the care of people who know that he was taking Coumadin. I went with that advice for awhile but when Idrees turned 6 and started going to friend's houses without me, I got him one made for kids. He hardly ever wears it but I have it in case he goes to camp or is somewhere with another family that doesn't need to know all the history. I did put a sticker on the bottom of his booster seat in the car that reads "this child has a prosthetic valve and takes coumadin". Any ER physician should be able to tell just by listening to his heart, but you never know. I know that Chris is beyond booster seat age, but you get the idea. If ever he were to get in an accident and you weren't able to tell EMTs about his history, they are going to figure out he's a heart patient the minute they lift his shirt. I guess it will depend upon whether or not he is prescribed any medication that would warrant a medic alert bracelet and quite honestly, you probably won't know that for sure until after surgery. Coumadin is the only heart-related medication that Idrees takes and that is because his mitral valve is mechanical. He took Lasix for awhile after surgery and that seems pretty standard but that's it.
I was in a similar position as yours because, like you, I was told that my son would "probably" not need any further surgery after his initial repair as an infant. While I continued to take him for regular checks with his Cardiologist, I relaxed a lot about his CHD. So to my surprise a few later....boom....it's looking bad and now we need to replace the mitral and the pulmonary. It was then that I knew that I was a "heart mom" for life and that my child would be a heart patient for life as well. It was that 2nd surgery that pushed me to educate myself more about my son's CHD and the book that Lynn mentioned "It's My Heart" was a terrific resource. I can send it to you if you wish. My hospital actually gives it out to new patient parents.
As far as the medic alert bracelet......well, Idrees takes an anti-coagulant. His Cardiologist actually suggested that I NOT get him a bracelet because it will make him "stick out" and feel different and also because he was always in the care of people who know that he was taking Coumadin. I went with that advice for awhile but when Idrees turned 6 and started going to friend's houses without me, I got him one made for kids. He hardly ever wears it but I have it in case he goes to camp or is somewhere with another family that doesn't need to know all the history. I did put a sticker on the bottom of his booster seat in the car that reads "this child has a prosthetic valve and takes coumadin". Any ER physician should be able to tell just by listening to his heart, but you never know. I know that Chris is beyond booster seat age, but you get the idea. If ever he were to get in an accident and you weren't able to tell EMTs about his history, they are going to figure out he's a heart patient the minute they lift his shirt. I guess it will depend upon whether or not he is prescribed any medication that would warrant a medic alert bracelet and quite honestly, you probably won't know that for sure until after surgery. Coumadin is the only heart-related medication that Idrees takes and that is because his mitral valve is mechanical. He took Lasix for awhile after surgery and that seems pretty standard but that's it.
cherylchapa
Well-known member
Congratulations!
I may do that soon. I have joined the California Heart Connection which is similar to Mended Little Hearts. I did notice that most of the TOF children who are active in the group are babies. I went to their annual picnic and there were a lot of TOF kids but none Christopher's age. Probably because as they get older and have no episodes and parents are told they are fixed, you tend to drop out of the support groups. Now we're back and there's no one to play with. We did hook up with another family whose baby has HLHS and Chris really enjoyed playing with his older brother. But it's not the same as having someone who has been through this exact diagnosis. They just have different needs.
I would definitely like more information on that but I would like to suggest that you post it outside of this thread so that others might see it and get involves as well.
Thanks for your insight. I will still be taking any good news they give me with a grain of salt. I just have to realize that they don't know all there is to know about this yet.
