Hello everyone. I have many quetions about the ross procedure. My son was diagnosed at birth with a murmer and later confirmed bicuspid valve. He had moderate/severe stenosis at 8 months and a balloon dilation procedure done at 9 months. This resulted in mild stenosis with mild regurge. perfect out come. Since then he had had more and more regurge at each examination. He is now 3 and 1/2 and has severe regurge and they had decided on surgery due to unacceptable thickening of the ventricle. The surgeon will attempt a repair which has only been given a 25% chance of sucess. If it will not hold they are going to do a ross procedure. I know the mechanics of the ross but have yet to find anyone with experience of a child having gone through the procedure. The desired outcome looks promising but I need to know what I am going to experience?
In your experiences how long in ICU?
How long in Hospital?
How long until the child was back to normal?
How old was your child when the procedure was carried out?
Anything else you think I might need to know in order to prepare myself?
Hello and welcome to our site. I wish I could answer your questions specific to the Ross proceedure, however never going through this proceedure I can't answer this for you. I have only met one family whose son was going through this surgery when my daughter was havving her transplant. Their son was about 15 at the time. Have you discussed any of these questions with your son's pediatric cardiologist? Most kids aren't in the PICU that long, maybe a few days and in some hospitals they go from there to a 'Step Down' Unit where they are still monitored but do not have major issues to deal with such as all the IVs and such. From there they go onto the normal pediatric floor. In the SDU, they usually stay for 1-3 days and can be on the pediatric floor for a few more days. Everything is based on how well things are going for the individual child. When my daughter was 7 she had an open heart surgery and we were told she would be in recovery for 24 hours, it turned out to be 3 days; it just depends. Kids tend to bounce back to health much quicker than adults and you would probably be surprised at just how fast they actually do. The surgery I was just writing about with my own daughter, for example, there was another little girl who had an open heart surgery the same day as my daughter and while my daughter was being brought back to her room after that three days, this other little girl was already up and running around the halls, literally! My jaw about hit the floor. I tell you this because of the extremes. I'm not sure if your son was in a PICU after his first proceedure or not, some balloon proceedures are done in a cath lab. PICUs can be overwhelming for most parents. There are a lot of alarms that go off, beeping of monitors and a lot of activity going on all the time. Parents may be crying and very upset. Children coming out of surgery have a lot of IVs, even placed in the neck which can be very upsetting to see. Children are very pale and you may look at your son and think he looks dead. All things considered, he will be well taken care of, the nurses and doctors deal with children in PICUs all over the country like your son and as a rule these children do pretty well. If the hospital is some distance away you may want to talk to the hospital social worker to find out about reduced rates at local hotels; they may even have a Ronald McDonald House nearby. Take care.
Thanks for the reply. I have been given a lot of information just nothing from personal points of view. I have been told best case senario that its 3 days icu 10-14 day hospital stay total and then a post discharge check before being allowed to go interstate home. We have a ronald mcdonald house to stay at which is great. The doctors are very reluctant to do the procedure on him because of his age but they need to do something. Doesn't exactly fill me with confidence. I was just really after some personal experiences so thankyou for yours. I hope your daughter is going well now.
I can understand your fears over this and really wish I could help you in this matter. I do know the Ross proceedure has been done on children, but know of no one personally. A good surgeon should be able to do this surgery and if there is a Ronald McDonald nearby, it must be close to a good children's hospital. It's a great place to stay; we have been to the one in Houston more times than I care to think about. if you haven't had the opportunity to stay there before, you will meet people from all over the world. Most come for cancer, not heart disease so you may or may not find someone to share your specific fears with. You are more than welcome here on this site to vent your fears and frustrations. Most of us know exactly how you feel even though our children suffer from different forms of heart disease. take care
Thankyou. I'm in Australia and we have to interstate to another hospital for the ross. It's not a financial issue more that this is such an invasive procedure. His last was a cath procedure and I have a daughter who has had several ops in her first five year but again that was her eye. This is his heart and just so big and overwhelming for me. My husband has the same condition but has never had to have anything done. He is understandably looking forward to it even less than me. I will keep you updated when I can. Thanks again.
I understand your fears. I am not sure of how things work in Australia as I live in the USA. I do know that this surgery is fairly common over here and sucess rates tend to be good. As I said before, I just do not know too many children who have actually had the surgery. I did meet that one family and their son was 15-16 years old at the time. Come to think of it, one of the girls at our chuch also had this done as well, I think. She is now 16 and doing well. Any time you have to face you child having surgery on the heart it is really scary; I've been through it twice with my own daughter. The first was when she was 7 years old and they did an electrical surgery on her heart. (now they do this in the cath lab and it isn't too big a deal) bacck when she had it done, Houston' Heart Institute was the only place in the world doing electrical surgeries on the heart. That was scary! but it had to be done. The second heart surgery was her heart transplant and all I kept thinking was when they removed her old heart, she was dead. Luckly, they got the new heart started beating. A lot of us have faced these fears you and your husband share. Come back often and vent your fears. See if you can visit the PICU where your son will be taken care of; sometimes that can help you to deal with the fears you have, just meeting the nurses can help you as well. take care.
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