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Kelly, Chris started really feeling better after about a month and a half. He just had it done in August so it's still fairly fresh. He had no problem with the groin point of entry at all. He is back to most normal activity although he will never be allowed to do contact sports. But he...

Hi Kelly! My 13 year old son just got a Melody valve! Congratulations! So far the only problems we have had is some chest pain from the stuff inside his chest shifting to accommodate the new valve. Was this your first valve replacement? It was my son's second. The next one will be OHS because he...

My son actually has a Melody valve (inserted 8/11/11). It was placed inside of a 2 year old Edwards Carpentier Bovine valve. The next one will be surgically placed because he will need a larger valve by then. Laws of physics being what they are, you can't put a 19mm valve inside a 16mm hole...

Back when Chris was a baby we tried to get him life insurance as a rider on our own policy. This was never a problem with our other children. But Chris was declined. All we asked for was a $10k child rider and we couldn't even get that for him. I don't hold out much hope for him later on...

Thanks for all the replies and support everyone! @Lynlw: I don't know what size the valve is. It's not noted on the ID card we got in the mail (thanks, Medtronic) but I do know it is smaller than 19 mm because that is what was already in there. It had to go inside the old one so had to be...

Hi friends. Last week Chris went in for a catheterization to place a stent in the left pulmonary artery and maybe get a Melody valve. Well, he got the valve! We are so glad that it was the right time to do it. We had a different cardiologist than we usually go to do it on our regular guys...

Thanks for the well wishes! We are still waiting for our procedure date. On pins and needles. Julian - Thanks so much for your comment. I appreciate that! I'll let you all know how it goes.

We have decided to move forward with the catheterization to place a stent in Christopher's left pulmonary artery. The reason it keeps getting scarred is because twice it has been surgically repaired and it looks good when his chest is open. But when they close up the chest and things settle...

Hi all! It's been a very busy couple of months around our house with school ending and all of Christopher's appointments. Here's the scoop on his diagnosis and treatment... The heart cath showed that Christopher's left pulmonary artery is extremely narrowed (+/-2 mm). The pulmonary valve is...

Thanks everyone for the well wishes and good thoughts. Chris is feeling a bit tired today and his cath site is very sore. He seems to be handling things fairly well but I'm starting to see the anger coming to the surface. 12 year old boys don't like to talk about their feelings with their...

Hi everyone. Chris had his cath yesterday and we are definitely headed for another surgery this summer. His cardiologist found that the left pulmonary artery is severely obstructed by scar tissue. This is the same place where his surgeon placed a patch to open it up during his OHS in 2009...

Christopher had his first ever stress test today and we learned a lot but left with more questions than answers. Isn't that the way it always goes? One thing we did find out is that he does not have asthma. He has adhesions inside his chest which constrict his lungs. But his lungs improve...

Duff - I love your moxie! The next time I bite my lip when I should be speaking up (not just in medical situations) I'm going to think, "What would the Duff Man say?"

We visited Chris' cardiologist today thinking he would have a treadmill test. But no go. Because he is fighting a cold now, there was no point in trying. He said it would make him sicker and not give accurate results. So for now, 2 more weeks of on the inhaler and Singulair plus Mucinex...

I distinctly remember not being able to hold my 5 month old baby because he was in so much pain after his first OHS. On the second day after the surgery, they already had him in intermediate ICU and were putting him on regular strength Tylenol. The nurses said he was fine but he cried...

Sounds to me like you need new doctors. I don't have any better advice for you but I do know the inability to gain weight can sometimes be associated with the heart issues. My son has always been small for his age. He was born with a heart defect but at normal weight (7 lbs). It took him...

That is AWESOME!!

Chris is out on the field right now playing what is most likely his last Little League game ever. He got to play almost 2 seasons before he started feeling poorly again. And now his cardiologist wants him to slow down and has limited his activities significantly. He's allowed to hit and catch...

If they can do the valve replacement during the cath, then I think the Dr. said he would be out of school for a couple of weeks. And he doesn't want to wait for summer to do the cath. So if that happens, then we will need the home tutor. It's not that they haven't done a lot of replacements...

Thanks for all the comments and encouragement everyone. At this point we don't really know anything. We don't know if he really has asthma or scar tissue adhesion or what. We will be using the same surgeon as last time (Dr. Gates at CHOC). We really won't have any definitive information...