Chris got a Melody Valve

[cherylchapa]

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 recommendation. We were a bit nervous because we weren't really all that familiar with this doctor. We knew he would do a good job, we just didn't have a rapport. But that all changed when we got to the cath lab and Our regular cardiologist was there to assist and observe. He cleared an entire day's schedule to be there for us!

So this doesn't mean he will never have another OHS. Because the Melody valve goes inside the ring of the old valve and this size is not going to cut it as he gets bigger, the next one will be OHS. But we can be fairly well assured that it won't be until he is fully grown. So we're looking at 6-8 years or so if the valve lasts that long. Of course, we don't know how long they last because they have only been around for about 3 years. BUT the valve itself is one that has been used in OHS replacements for many years and should hold out for at least 8-15 years.

Chris feels great heart-wise. He did catch a cold with a pretty nasty cough which prompted a chest x-ray and a trip to the cardiologist. But it was clear and he has been allowed to take cough meds for it.

Thanks for all the support along the way. So glad to have this forum!

 

[Julian]

Wow! Thanks for the update. Hoping this valve does the job longer than expected. Hopefully by that time there will be better options! GO CHRIS!

 

[epstns]

Way Cool! This young man will have some dynamite stories to tell. Bet he'll have all the girls flocking around to be with "The Bionic Boy."

 

[Lynlw]

I'm glad to hear he was able to get it. How much nicer it is to recover from a cath than another OHS. I'm glad your liked the card.
Hopefully it will last quite a while. If it helps, from what I remember when we were talking about Justin possibly getting one in 07 as part of the trials, I'm pretty sure they have been around a little longer, I think they've been used about 4 years in the US, but they were used 4-6 years earlier than that in the UK/Europe.

 

[hannahsmom]

Glad everything went well for him. I wish him the best of luck in the future.

 

[kfredva1]

So glad Chris got the valve. I hope it lasts for quite a while so he may turn his attentions now to being a full fledged preteen! lol Hope he's bugging you about cell phones and getting a driver's permit very soon! ( I have 5 boys so trust me, I know the speeches they prepare). THat's what should be on a young mans mind instead of heart surgery. Good Luck to you and your family.
Kathy

 

[rubywhistle]

Thats fantastic!

 

[Lynlw]

Cheryl, I was wonderring what size valve Chris got. Isn't it great when you think about the fact, instead of feeling so great right now, he could have recoverying from OHS?

I remember when Justin needed a section of his conduit cut out and patched for stenosis when he was 10, his doctcrs just came back to the US after a couple year in switzerland and when we found out during a cath he would need ER OHS the next day, his card who we knew pretty well, said if he was in Europe he could have just had it stented. Recovery was good, for OHS, but still. Anyway 2 years later the same spot was blocked again, but this time the stent he needed was approved, so he was able to avoid OHS for a while (until he reached close to full size) every once in a while when he was playing sports a couple weeks after the cath, I couldn't help but think how different it would have been and was so grateful.

 

[Debbrn]

Cheryl,

I am so happy for you and Chris and all the others that will be helped by this. I have had 4 OHS. My docs feel strongly that the next time I will be able to have my valve replaced in the cath lab. Though I have done great with all of my surgeries, not having my chest cracked along with all the other things that are included will be fantastic. My current valve is only 15 months old so I have time for the technology to be even better.

Debbie

 

[Duffey]

Cheryl,
I don't know how I missed this thread, but I am so happy to read today that Chris was able to get the melody valve. What a relief for you all, and those of us who have been following his journey.

 

[neil]

great news

 

[Luana]

Cheryl,
Was this done at CHOC or UCI?

 

[cherylchapa]

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 smaller, right? And yes, we are sooooo grateful for the technology that has benefited Chris and so many other children.

@Debbrn: 4 OHS sounds like an awful lot of chest trauma. The next one will be Chris' 3rd. We know he will have to have another one because they can't put a bigger valve inside the smaller one when he outgrows it. I will just have to pray for less invasive techniques in the future, I guess. I hope you can have a cath instead next time. It's so much easier on the patient as well as on the family ;-)

@Luana: The procedure was done at Rady Children's in San Diego because they have a better track record with this particular procedure. His next surgery will probably be done at CHOC. We have not been to UCI since 2005 when Chris spent 8 days in the ICU for bacterial meningitis. Scarier than all the OHS and cath procedures combined! Never seen my baby so sick in all my life and I hope I never see that again!

@everyone else: Thank you so much for the support you have given throughout this journey! I don't know where I would be without you!

 

[COLLEEN S]

Yay Chris!!! You rock!!!