Tuesday, November 12, 2013

Worth The Risk?

I finally heard back from Kimble's cardiologist.  It took 4 weeks for the team of doctors to discuss the results of the MRI/ECHO and decide whether Kimble will have surgery now or later.  As you can imagine, it's not an easy decision.

Kimble's heart defects are complicated, and even harder to guess at what the future holds.  There simply isn't any data out there to help the doctors decide what road is best.  Pediatric heart defects, and their repairs, are relatively new in the medical world.  There simply aren't really many adult patients over the age of 30-40 that have had surgeries as infant/children and are in their adulthood to gather data from.  Relating to Kimble, there simply isn't anyone that we can use as an example, whether this surgery versus that surgery would be good for him.  We have to go step by step, and see how Kimble's heart grows in a 4-6 month time period, and then make decisions based on what the doctors think they can do to help Kimble's heart function better with its defects.

With that, the team made their decision, which is once again to postpone the surgery that they want to do, to reverse the Glenn.  As a reminder, the Glenn is the last surgery Kimble had, at 7 months old.  It re-routed half of Kimble's bloodflow to bypass the right heart and go directly to the lungs to get oxygenated, before continuing on to the left heart.   This was done because the right heart, with its three defects, couldn't handle the full body's blood supply.  Since then, Kimble's heart has grown remarkably well, and is now considered in the "low normal" size category.  This, in itself, is truly a miracle, considering that he basically only had half a heart when he was born.

Why are they postponing surgery?  There are many reasons.  I'll go through them step by step.  First, there is ZERO data on reversing the Glenn.  This is a surgery that isn't done very often, so it's hard to guess at what complications might arise from it.  Because the heart and arteries and valves and everything else that relates to a heart surgery are small and delicate, it's a bit tricky to do. There is the added complication of the re-routing sites, and thickening of vessels, pressure differences, and teaching the heart to adapt to the new bloodflow.

Second, with the size of Kimble's heart, reversing the Glenn at this time, could disrupt the normal pacemaker of the heart.  Complications could arise and would require the surgeons to put in a mechanical pacemaker, which at 4 years old, would be a tough life decision. 

Third, the darn Tricuspid valve is simply trouble. It's never functioned well, has been the basis of all of Kimble's heart defects, and although it has grown and is allowing more bloodflow, it's mechanical difficulties really limit it's ability to function well.  There could be some major pressure problems, with the bloodflow, and it's hard to anticipate this.  If you can picture this, imagine a river flowing through a tunnel, and then opening up into another river.  If suddenly, there is a flood of water, and the tunnel opening is tiny and unsupported, then where is that massive amount of water going to go?  Well, it'll back up, it'll cause damage to the tunnel, and there might be an alternate route created and the water will go where it's not supposed to go.  Complications.

Fourth, Kimble is doing very well as he is, which is really incredible.  The doctor's can afford to wait.  They want to let his heart grow bigger because there is less risk the bigger the heart.  Plus, they would like to be able to put in a Pulmonary valve (right now it's just an opening that was done in the Cath Lab when he was a week old) and possibly surgically help the Tricuspid valve.  Both of these procedures can't be done now (for reason's not told to me) but could be addressed at a later time.  If they wait on reversing the Glenn, then it's possible they can do everything at once, thus eliminating the need for separate surgeries.

For these four main reasons, Kimble's surgical team is postponing the surgery.  They aren't giving up on reversing the Glenn.  They all think it could greatly improve Kimble's heart function for his lifetime, which we hope will be long and joyous.  However, for now, the risks greatly outweigh the benefits.  We will wait, and address it again, probably in a year.

This gives us time to continue to save up for his surgical costs.  If you haven't already, please consider buying my cookbook(s) to help benefit Kimble and our family.  There are three options to purchase (printed book, ebook, or .pdf).  We will be having more surgeries.  With Kimble's complex heart defects, it's not a matter of "if", but a matter of "when".  Spread the word. Buy cookbooks as gifts for family and friends.  Please continue to help.  We all appreciate it.


Sue5007 said...


Mindy said...

Always thinking of your sweet family. And thanks for the reminder for the cook book. I have mommy brain and always remember late at night :)

Colleen said...

It sounds like Kimble is in great hands with a lot of thought and patience in the decisions made for his heart. He is such a gift!