Anyone else in the 'waiting for surgery' period?

Krista - posted on 06/22/2012

Hi, I hope your son is doing well. I know it was a few years ago that you wrote, so dont know if you are still waiting for surgery. I so wish there were boards like these when our son was born, So I wanted to share. our son was born with AVS (Aortic valve stenosis,) and underwent a balloon vavoplasty at 3 weeks old. We were terrified, but all went well. It was crazy... they sent him home the same day as the valvoplasty with just a pressure band-aid on his leg!! The docs said that it would hold him over for a few years, but he would need his aortic valve replaced within a few years. Then he had Aortic Valve Regurgitation and was checked every 6 months. I hated waiting!!! It has also been classified as severe, even though he is asymptomatic. We have lived with it for years like this, but it has gotten progressively worse, even though he had NO symptoms. We just had to trust the echos, and the pediatric cardiologists. He was even doing karate up until 2 weeks ago!

Well, (After a lot of prayers) he is almost 11 years old, so surgery, finally. Just last week had the Ross procedure. Again, we were so scared, as there is so much (too much) information out there confusing our decision. Anyway, I wanted to post here, because we have been in that terrified position, thinking the worst, with doctors telling us that surgery is imminent.. but doctors can be wrong! Our son went almost 11 years before needing surgery. Then there was the question, which surgery? Do we go with the 'tried and true' mechanical valve (less risky) yet commit him to being on blood thinnners for the rest of his life, or do we go with the Ross (not as many surgeons do it, and it is a lot more complicated with seemingly more that can go wrong)?

As for the surgery- YES, the surgeon and the hospital make ALL of the difference!. Our own pediatric cardiologist did NOT recommennd the Ross... but after praying, and watching our (extremely active) son, I could not imagine him on coumadin, as he would bump into something and bleed within the first 24 hours! We had to take into account his personality and tendancies. That, and we wanted to give him a shot at a 'normal' life, not measuring his coumidin levels every few days for the rest of his life. It was a scarey decision, but once we made it, we knew it was right.
So, we decided on the Ross procedure, and wanted someone who was the BEST at it (He was not going to be a guinea pig for anyone learning). Our son had his Ross done by Dr. Spray at Children's Hospital in Philly (CHOP) and he was AMAZING. He is one of the best in the world, and the hospital lives up to it's number one status too. Every nurse, administrator etc went beyond what was necessary, and we know our son was in the best place he could be. He was up WALKING around the DAY after surgery, and went home on the 6th day. He is playing Wii right now, and arguing with his little brother about Skylanders, less than 2 weeks later. I am so thankful to God that He lead us to CHOP and Dr. Spray.... and that he had the Ross. Yes, it was scarey to wait, to think of all that could go wrong... but we just had to give our son a chance at just being a normal boy. We are so glad we did, and we will pray that this Ross holds for decades. Hope this helps... I so wish someone would have shared their experiences when our son was born, I was scared out of my mind...but at such peace now.

Wendy - posted on 06/23/2011

Waiting is hard! My daughter had OHS at 13 days. We waited then and now we are waiting again. We were told she would have to have surgery by the age of 5 so I started getting axious about a year early and well, we are still waiting and she turn 8 in August. Honest, I think about it a ton but not like I used to. I do worry about her, all the time! I don't let her run at school, at all. She does not participate in any athletics due to her cardiologist requests. She is in tumbling but they don't do much but walk on the beam etc. I know how you feel, waiting stinks! I have seen Syd get the gray/blue but usually when she is really cold. Her circulation is poor and we have to bundle her even when she goes to bed. I guess God knew I would take care of her! Thats why I got her! I worry every time she gets sick, I make the PCP do chest x-rays when she is sick so we can see if her heart is any larger. When she is lathargic, I worry. Its easier said than done because I can't do it but, try your best-LET GO AND LET GOD. The best advise I can give you is go with your gut feeing, mom is usually right!

Jennifer - posted on 04/29/2011

Hello i dont know much about what your child is going through but i dont know about levels being that my son has been in the hopsital for about 2 months after he was born. when he was born his o level was in the 80s i started asking questions about what does that mean and what does this mean and a really patient nurse said that when they would like his level to be in the 90's the reason we were being flown to atlanta for open heart surger when he was a week old was that over night his level dropped to the 40s.. the morning of the surgery he was very swollen and had blue lips.. i knew that the doctor was right and it was time for surgery. i only had a week with him for that time but he seemed fine and was a normal looking baby and when they said its going to happen it did and we had open heart surgery a week and a day old, since then 4 caths and he is now walking and not really talking but no signs of his truncus. he is going in july for another check to see if we can wait for open heart surgery since they want to wait as long as possible and i completly understand.. the piece they put inside of him doesnt grow and they want to hold off as long as they can to cut down on the surgerys they need to do and try to get him as big as he can go. i have hope that everything will be great for you and my baby. take care

Heidi - posted on 04/27/2011

my daughter rarely turns "blue". I've actually only seen her do it once since she was born. However, she does sometimes get a slightly, like you said, blue grey tint on her hands and feet due to circulatory problems and oxygenation problems. They call it "dusky" and with Liddy, its usually accompanied by coldness in her hands and feet and typically is because of her either holding her hands tightly closed or putting pressure on them for long periods of time....

Amanda - posted on 04/27/2011

My daughter is 3 months and 2 weeks old tomorrow. She has TOF. VSD plus a small pulminary valve. We went to her new cardiologist yesterday and were told that we needed to do surgery within the month. Our previous cardiologist told us that she was fine and could hold off till she was 6 months old. She really hasn't started turning blue until recently. It's real faint. And I only notice it around her eyes, on the arch of her nose and around her mouth. It only does it when she seems to start breathing harder. We noticed on the SPO2 monitor yesterday that when her heart rate went up, her O2 levels were in the 60s. We never noticed that before. Our previous cardiologist told us to check her only when she was sleeping cause that's when we would get the best results. Our current cardiologist told us yesterday that they don't usually gradually get blue. It's usually a sudden thing. She doesn't turn blue like what I see in pictures. It's more like a blue grey tint. She does it the most when I take her out of the bathtub and put her on her towel. Her mouth really turns color and her tongue recently has started turning purple as well. But, for the most part throughout the day she is pink and has no problems. She is not a fussy baby, she eats well and is growing fine. But, when we were told yesterday that we were going to have to do surgery soon cause it's getting serious it was a big shock. Now it's just a wait til we hear from the surgeons on the scheduling.

Cheryl - posted on 04/22/2011

Hi. My son has Tetralogy of Fallot and had his pulmonary valve replaced almost 2 years ago. He is 12 now. He went for about 10 years with essentially no pulmonary valve at all. When his heart began to work too hard to pump the blood into his lungs, that is when the cardiologist decided it was time. The aorta and pulmonary artery have very similar valves. In the Ross procedure they take the child's own pulmonary valve and place it in the aortic position and then replace the pulmonary valve with a bioprosthetic (pig, cow, or human tissue) valve. Mechanical valves are almost never placed in the pulmonary position because the pressure is not high enough there to open and close a mechanical valve and there is a need for blood thinners with mechanical as well. The reason you need to wait as long as possible is because once a tissue valve is placed, it will begin the countdown to the next replacement. And then the next, and the next, and so on. Tissue valves degrade and calcify over time. They will outgrow the valve eventually and the calcification process happens faster in children because they are growing and their bodies produce a lot of calcium for those growing bones.

I know the wait is hard, believe me. We are in the waiting game again as our son's current valve is failing. He has a leak and an obstruction and is being evaluated for asthma. His activities have been restricted and he is heartbroken (no pun intended). We went for many years thinking he would be just fine and never need another surgery after his first when he was 5 months old. At that time, they did not place a valve, They just opened up his pulmonary artery because it was almost completely closed.

For us, the blueness was faint. More like a dusky gray pallor around his lips and bags under his eyes. Most people never even noticed there was anything wrong. He was lethargic but all newborns sleep a lot. He couldn't get through a 5 minute feeding without a nap. We were told not to let him cry too much so people thought we were spoiling him. But when he had an episode, you knew it. He would cry and was inconsolable. After only 4 of those episodes, our cardiologist said it was time for surgery. That first year was a nightmare.

Now that he's growing up, I worry more about him not taking care of himself. He went for a long time at 60% lung capacity and never even noticed he was short of breath. I hope everything goes well with Tanner and his surgery. Good luck!

Alyce - posted on 04/15/2011

My son was born with Ebsteins Anomaly. But his case is a little more unusual than noraml because the tricuspid valve actually grew into the heart wall. He was born in an operating room because at birth he was scheduled to go straight into the adjoining OR to have his heart repaired. He was given 15% chance of ever taking his first breath but he is now 16 and never had surgery. He now has the following diagnoses: Ebsteins Anomaly, Tricuspied Displasia, Mitral Valve Regurg, ASD, Aortic Valve Regurg, the Aortic Valve is deteriorating and clicking and on his last visit ( March 31, 2011) his Rt Atrium is enlarged. We are noticing that he is starting to have symptoms from his defects; his lips are turning blue, he gets tired more often, he feels faint when playing outside and he is having palapitations. The Dr said the thing we need to be most concerned with his the Rt Atrium becoming Enlarged. He has been so healthy all these years that it is hard to look at him and think that there could be so much wrong with one little heart. We are very thankful that he had the 16 healthy years to make memories and be a kid. He was a JV Football player until we found that his heart we starting to become enlarged. Now it is a waiting game for him to start having heart failure before they will schedule surgery. The Tricuspid valve is going to have to be replace with a mechanical valve and I have to tell you that it makes me very nervous to even think about. I pray that one day they will find a cure and a prevention for CHD.
♥ moms rule!

Jennifer - posted on 04/08/2011

Hello Katie, I complely understand where you are coming from. We are currently waiting for surgery as well. His last cardiolgist appt informed us that we are "able" to push his heart surgery back to July , which was supose to take place in March.. and at that point see where my son stands. I have expressed the way i feel to my doctor as well and he tells me the same. They want to do least amt of surgerys as possible. My son has truncus Arteriosus. He was missing a vaulve that built and put a patch over the whole in his heart. I trust my sons doctor with everything, i absolutely love him. I was shipped down to his with my son in the ambulance the day i was supose to be released. told me that my son needed open heart surgery and i had to tell him by that next morning where i wanted the surgery done. went so far as to tell me there were some things going on at the very hospital he worked at and he wouldnt want his own child being operated on there. we live in charlotte and when i asked him where would you send your child his respond was atlanta ga, he then put me on a plane and was on the way to atlanta the next day. a special plan with just a tank for my newborn came and got us. that litterly saved my sons life. so when i say i trust him completely i do. when he says that we have to wait then i understand. he also went so far as to help me understand by drawing me pictures. he said that right now xavier is doing ok, he is not perfect but his heart is working. we do regular echos and we are waiting to see when the left side will show a extra large muscle. he advised me that its like when you are working out and you only were to work one side of your body then that one side would become very large. well his last echo didnt show any signs of that happening, when i said lets do the surgery now to avoid that from happening he advised me that he is not putting any strain on his heart at this time. every open heart surgery puts him at risk of having a pace maker so if he can avoid any that and avoid any unneeded surgerys being that he is at a age that will start sprouting up quickly. the peice they are puting inside of him will not grow with him so we have to wait until he is not physically being strained but we start to see his mucsle working a tiny bit harder. he also assured me that i wont ever see xavier turn blue by waiting for this. so good luck i know its hard because our jobs as mothers are to prevent stuff but we can not see that go on. well i look at as if i am preventing additional future surgersy by waiting until its our time. let me know if this helps.. keep your spirts up. he has a good mom to be worried

Heidi - posted on 04/07/2011

We're waiting for surgery for our three month old to have surgery to repair a complete AV canal defect. This surgery, according to her cardiologists, must be done well before her first birthday. She doesn't seem to have any ill effects from the defect at this point. She is pretty and pink, etc. The only problem that we seem to be having is slow weight gain. She's three months old and only weighs 10 lbs. She does gain weight but it takes alot for her to do so. We (or at least I) am ready to get on with the surgery so that we can put it behind us and get on with dealing with her other issues. I will be praying that you and your family can do the same.

Rachel - posted on 07/09/2010

We went through the same thing with my daughter. She had her first surgery at 2 days old but the second surgery couldn't be done until she was 2-4 years old and that would depend on how her body responded to the first procedure. We just had regular checkups at first every month then every 3 months then every 6 months til she was 3 years old and they decided she was ready. They just told us to watch for lethargy, excessive blue tint of the extremities and lips, trouble breathing or any abnormal behavior. It was hard for a long time worrying and wondering if she was ok but everything turned out fine. Our biggest problem was after her second surgery when there was a risk of pericardial effusion. We had a follow up appt 7 weeks after the procedure when they found out that her chest was filled with fluid and she had to stay in the hospital for another week to have her chest drained. She showed no signs of retaining fluid so it was a big surprise. The best advice I can give you is to call the doctor if you have any concerns or if your son is doing something unusual. My daughter has always turned a little blue if she was screaming a lot or after running for a long period of time. The lips were the most obvious, turning purple. Her hands and feet were a little harder to tell...just paler than usual. It's normal for a little blueish tint after strenuous activity but if he's turning blue from just sitting around then I would be concerned.