doubletroublex2
Well-known member
Hello I'm here because Keegansmom02 sent me here from baby center. Although they are wonderful and all, I'm finding that this might be a great fit for my situation. See my 5 year old son will be having his mitral valve replaced on the 17 of May. (not that it has ever happened on the first try yet!) Any way this will be his third surgery and the first that he will really remember and can truely know what is going on. I'm so afraid that I will not be able to keep myself together. I keep hoping and praying that everything will go well. Each surgery he has been very quick to recover, how many times can we get lucky? Here is my kiddos history.
Caleb has a partial AV Canal and no downs syndrome. He was diagnosed at 5 days old. His pc didn?t think he would need surgery until 3-4 years of age. Well, he needed it earlier than expected. Caleb would only eat 1-3 ounces a day at about 3 month?s old and never got over 10 lbs until they had postponed surgery because he was too little. Then they put in a NG tube and got him up to 11 lbs at four month?s old and surgery was on. His first surgery lasted about 7 hours and they repaired his mitral valve, tricuspid valve and an ASD (his VSD had closed on its own, and reopened after surgery but again closed). At about 2 years 2 months old, I noticed that he was again turning blue so brought him in to see his pc and he kept telling me ?it?s normal, he?s a heart baby?. I knew my child better than anyone so went for a second opinion, and did a sedated echo to find out that, he needed a mitral valve replacement. I didn?t like the sound of that so I took this information back to my original surgeon and he agree that Caleb would need a second surgery, but he felt that he could repair the valve. Therefore, we went ahead with the surgery. This surgery lasted 9 hours and they repaired his mitral valve, and removed a sub-aortic membrane. After this they had really hoped that this would be the last or at least get him into his adulthood. Well now it's only three years later and now the only thing to be done is a MVR.
I have so much pitty for this child, it's starting to carry over to my other children. I know that he will adjust to life and may never miss the things he "can't do" (he loves soccer and so does his twin sister). I'm finding myself telling her no just so I don't have to tell Caleb no. This is not fair to either one of them.
Any way for now I will stop rambling I tend to get away from myself. It's just I have so many question.
Jamie
Caleb has a partial AV Canal and no downs syndrome. He was diagnosed at 5 days old. His pc didn?t think he would need surgery until 3-4 years of age. Well, he needed it earlier than expected. Caleb would only eat 1-3 ounces a day at about 3 month?s old and never got over 10 lbs until they had postponed surgery because he was too little. Then they put in a NG tube and got him up to 11 lbs at four month?s old and surgery was on. His first surgery lasted about 7 hours and they repaired his mitral valve, tricuspid valve and an ASD (his VSD had closed on its own, and reopened after surgery but again closed). At about 2 years 2 months old, I noticed that he was again turning blue so brought him in to see his pc and he kept telling me ?it?s normal, he?s a heart baby?. I knew my child better than anyone so went for a second opinion, and did a sedated echo to find out that, he needed a mitral valve replacement. I didn?t like the sound of that so I took this information back to my original surgeon and he agree that Caleb would need a second surgery, but he felt that he could repair the valve. Therefore, we went ahead with the surgery. This surgery lasted 9 hours and they repaired his mitral valve, and removed a sub-aortic membrane. After this they had really hoped that this would be the last or at least get him into his adulthood. Well now it's only three years later and now the only thing to be done is a MVR.
I have so much pitty for this child, it's starting to carry over to my other children. I know that he will adjust to life and may never miss the things he "can't do" (he loves soccer and so does his twin sister). I'm finding myself telling her no just so I don't have to tell Caleb no. This is not fair to either one of them.
Any way for now I will stop rambling I tend to get away from myself. It's just I have so many question.
Jamie