Saturday, June 16, 2012

Maybe asking for a third opinion will provide clarity...

I spent some time Wednesday talking to both our cardiologist, the surgeon from Boston and the coordinator for consultations at CHOP.  We're going to do another echo in 5 weeks.  After our cardiologist looks at that we'll talk some more about what options we have available.  We'll also be sending that echo to Boston and CHOP so they can give us an opinion based on some clearer pictures.

This isn't like last time where we reached the stage where it was better to do surgery than to wait.  Right now it would be surgery before he needs it.  And as our cardiologist pointed out, before he needs it means he's not as sick, but ideally it would be right before he needs it.  Unfortunately there is no way to tell when he's going to get sick so we can schedule surgery before it happens.  The conventional wisdom in these situations is not to operate on a healthy kid.  My understanding is Boston is a bit more aggressive than that.  They see something they can fix and they want to do so.  It makes sense.  But my thoughts are more about the future.

What if he's stable and we can wait five-ten years?  What kind of surgical techniques will they have perfected by then?  Will they be able to clip the leaflets together in a transcatheter procedure?  Will they have better methods for OHS?  What if they get in there and find that they can't actually improve the valve function?  Do they just close up and we've risked his life for no gain?  Do we go ahead and replace the valve then?  Valve replacement guarantees we'll be on blood thinners and starts the clock for future valve surgeries.  These prosthetic valves wear out and have to be replaced again and again.  On the other hand, what if his valve is becoming more and more damaged as we wait?  What if doing the surgery now means he'll never have to have a surgery again?  There's no way to know.

I talked through some of the risks with our cardiologist on Wednesday.  I asked him about C's left side heart enlargement.  I thought it was caused by heart strain, but rather it is caused by blood volume.  Essentially, the heart grows as blood volume puts pressure on it forcing it to grow. His heart pushes a higher volume of blood on his left side, so the heart has grown to accommodate that.  Conventional wisdom has stated that kids don't need to worry about that enlargement until it nears the size their heart will be as an adult.  Once that size is reached, you don't want the heart to grow further so you should step in.  We're not there yet.

There haven't been many (if any) long term studies on mitral valve repairs for kids in C's situation.  There's no guarantee that doing this repair won't cause the valve to stop growing and then we'll be dealing with mitral valve stenosis instead.

I'm glad we get to delay all this for 5 more weeks so we can get a better idea of where we can go from here.  I'm not ready to face all this yet.

If you can think of any questions I should ask the cardiologists when we see/talk to them again in July, please drop me a note in comments.

Monday, June 11, 2012

To Repair or Wait, that is the question...

Dr. Baird (Boston) called with his opinion on my son's mitral valve regurgitation tonight.  He said the echo I sent didn't have pictures as clear as he'd like to see and it didn't have all the views he'd like to see, but from what he could see the regurgitation looked to be moderate to severe, not moderate as we'd previously believed.  He felt comfortable saying that there was a 90% chance they could repair the valve, maybe even to the point he'd not need another surgery. 

I asked him to call and speak with our cardiologist.  When my pediatrician talked with my cardiologist last week, he told her that Boston was really aggressive on repairs and they'd probably suggest surgery.  He was right, they did.  I thought I was prepared for them to say surgery now, but I really wasn't.  I can't even put into words what I'm feeling right now.  I just know I don't want a world without C in it.

C's left ventricle is mildly enlarged, his atrium is moderately enlarged. I worry that every day we have the leak is another day of damage to his heart structure.  I wonder if his heart will be able to recover from that damage once we do get a working valve.  

I hate that we're in this position.  I hate trying to make a judgement call whether or not he's better off trying a repair now or waiting 2, 5 or 10 years to see how surgical techniques improve.  If we stay here, we'll wait and it is almost guaranteed that we will have a mechanical valve replacement.  If we go to Boston, there is a 90% chance they can improve or fix the valve right now and maybe for good.  

C's OHS was not uneventful.  He had a Pulmonary Hypertensive Crisis when he came off bypass and they had to put him back on to break it.  We spent 6 days weaning off the vent.  We spent a further 5 days in the PICU with heart bock and JET.  

Now we're thinking of voluntarily going through this again, before we absolutely have to in the hope that it will make him better, but we have no guarantees.  I hate everything about this and I don't want them to take my baby even for a second.  I just want to take him and run and all I've been doing is thinking about the possibility of surgery for 2 hours now.  I really am not ready for this again.  I'm terrified that I'll hand them my baby who knows the alphabet and counting and all kinds of amazing things and I'll get back a baby who can't talk or no baby at all.  I hate this SO MUCH. 

Friday, June 1, 2012

The Saga Continues...

Every time I think we've reached the end of C's medical drama, we add another layer.  C's bout with RSV has left him wheezing with every cold virus.  There is a chance he will end up being diagnosed with asthma.  In the short term we're back on oral steroids for the third time since March.  We've added daily treatments with an inhaled steroid and have a rescue inhaler.  Hopefully we'll get everything under control.  In the mean time, I've been thrown for a loop and am having trouble assimilating these new medications into our routine.