WOW I'm good! (Pre surgery update)

[sarahsunshine]

Yesterday was Skyler's pre-op appointment.

Skyler's bioparents met with the surgeon (I couldn't be there). As you know, this is a point of contention with me because I have done all the research and they haven't. I've been around for all of Skyler's life that he can remember. But, I sent a HUGE list of questions for my husband (Skyler's dad) to ask.



Skyler has a cough. Depending on how it is on Monday, surgery may be next Thursday or a month from now.


They met briefly with the surgeon to discuss what was going to happen exactly. For those who don't know Skyler's story, he had a St.Jude Mitral valve put in when he was 4-5 months old. They said it would need to be replaced as he grew, likely at least by the time he was 3 or 4 years old. He's now 12 years old and the cardiologist has decided that it's time to replace it now.

Skyler also has Aortic stenosis and regurgitation. Over the past 6 years (at least) the "Ross Procedure" has been a big word on everyone's lips. The Ross procedure involves taking the perfectly healthy pulmonary valve from the other side of the heart, and putting it in the place of the bucispid and regurgitating aortic valve. Then a tissue valve gets put in the location of the pulmonary valve.


I did a ton of research on the Ross procedure and decided that it was a dumb idea in Skyler's case (why mess with the other side of the heart, affect 3 valves instead of 2, put in a tissue valve when he is already on anticoagulants?). The night before pre-surgery, I asked my husband if anyone had ever mentionned FIXING the aortic valve (I had never heard it mentionned). He looked miffed and said "no". I gave Wayne a list of about 25 questions to ask. He only asked about three... but that's because the surgeon said:

"Time to replace that Mitral valve. I'm planning to use an On-X valve that may be able to be managed with Aspirin instead of Warfarin. I have to run - there's an incident."

(I've heard that but didn't think these trials were that conclusive as yet. Does anyone have any recent info?)

My husband said, "Isn't there something to do with the Aortic valve as well?"

Surgeon, "Is there? I don't have the file on me, just a minute." He leaves and comes back a few minutes later. "Oh, right. Notes from Aug 9 meeting. He has MILD regurgitation in his aortic valve which isn't worth surgery, normally. But since were going to be in there, I'll try to FIX it. If it doesn't look fixable, I'll replace it with a mechanical valve (On-X)."

My husband was miffed, "So, we've been hearing about a 'Ross Procedure'. Would you try that?"

Surgeon, "NO. We only do Ross procedures to try to prevent people from having to use anti-coagulation drugs. Skyler is already on anti-coagulation because of his Mitral valve, so there's really no reason to do the Ross Procedure."

So, that's about it... Skyler's dad asked one or two other questions, but they were unrelated to the Ross procedure. (Aortic root?)


So now I'm really curious why there was so much talk about the Ross procedure over the last 12 years, and nothing about fixing Skyler's Aortic valve. I don't think I'll ever know. But either way, it's really nice to know that the research that I did was correct, and that the doctor is up on it! PHEW! Plus, it's nice to know that Skyler will only have 2 valves dealt with instead of 3... and the possibility of having only 1 prosthetic valve. HUGE relief! Best case scenario! WOOHOO!


So now there's just the "wait and see how he's doing Monday" to determine whether we stick to the original date, or it gets postponed.

 

[Lynlw]

Im glad you were able to give helpful questions, FWIW I wouldn't be happy with not being able to have a good conversation with the surgeon OR the fact he wasn't on top of the aortic valve stuff, but thats just me.

On-X I can't imagine them being able to use just aspirin ANY time soon. The current ( US/Canada) trials now do NOT have an aspirin only leg, it is either lower INR OR Plavix AND aspirin. I'm pretty sure The ONLY ON-X trial that they tried JUST Aspirin was in Germany and was stopped before they even started the US trials after someone on the Aspirin only leg died. ON-X said that has nothing to do with why they stopped the trial..BUT since they didn't have an Asprin only leg in the US trials, believe whatever you want.

Plus I think the chances of having lower INR or plavix only might be for the lower risk people to start out with at least, and I believe just the fact the valve is in the Mitral postion increases the risk over the Aortic.

That would be great if they were able to repair the Aortic valve and just replace the Mitral

 

[Bina]

It sounds like there are some easier choices for the upcoming surgery. Crossing our fingers for a repair and
a new mitral mech. Keep us posted.

 

[Jkm7]

Best wishes.
Hope the surgery goes smoothly and he has a fast, uneventful recovery.

 

[sarahsunshine]

Im glad you were able to give helpful questions, FWIW I wouldn't be happy with not being able to have a good conversation with the surgeon OR the fact he wasn't on top of the aortic valve stuff, but thats just me.

On-X I can't imagine them being able to use just aspirin ANY time soon. The current ( US/Canada) trials now do NOT have an aspirin only leg, it is either lower INR OR Plavix AND aspirin. I'm pretty sure The ONLY ON-X trial that they tried JUST Aspirin was in Germany and was stopped before they even started the US trials after someone on the Aspirin only leg died. ON-X said that has nothing to do with why they stopped the trial..BUT since they didn't have an Asprin only leg in the US trials, believe whatever you want.

Plus I think the chances of having lower INR or plavix only might be for the lower risk people to start out with at least, and I believe just the fact the valve is in the Mitral postion increases the risk over the Aortic.

That would be great if they were able to repair the Aortic valve and just replace the Mitral

Yes, well, I agree he should have noticed the Aortic part. On the other hand, it obviously wan't that big a deal, and he just forgot to read through his full notes...Yes, he's a heart surgeon, but he IS human. It didn't seem like that big a deal to my husband at the time.

As for the summary of research, that is exactly what I had read. I guess I'll have to update on what I think of Plavix since it's not anything I have done any lengthy reserach on. I would be rather excited about a decreased INR level, though.

BTW, what INR levels has Justin been at for most of his life? Skyler has been between 2.0 and 3.0, and more recently 2.5-3.5 (they changed it a couple years ago for some reason I can't remember). What have you read about the impacts to a developing body?
Has justin been taking supplements (vit D, Magnesium?) as recomended by the his cariologist?

 

[Lynlw]

I guess I was just surprised to hear that since we've had numerous presurgery meetings or getting opinions and with a few surgeons and the docs pretty much not only have what he needs done or might need done memorized, but also his history, and concerns even if they never saw him before.

Justin has a tissue valve and isn't on any meds, hasn't been on any meds since he was a toddler, escept right after his different surgeries. The biggest concern i know for growing kids is decreased bone density in some kids.