SUPER GREAT NEWS……….

Today we had Coop's cardiac appointment and it went better than expected.  Dr. Kaine confirmed what Dr. Kelley had already told us, Coop's chest pain is structural meaning it is not cardiac related at all.  Considering the trauma Coop's chest cavity has undergone in the past 6 years and the deformation of his chest in general, it is causing pain in the tissue, ligaments and muscles.  Combine that with cold weather and growth and you end up with some pretty severe pain.  These are pains Coop will probably suffer from at different times and as we know they can be significant.  I feel bad for him and his pain but I have great relief knowing it is not cardiac related.  We will simply continue to give him Advil or Tylenol or a combination of both to help control the pain when needed.

Coop's tests were good again today.  They did a very extensive ECHO on him which made us a little nervous at first but the results were what they expected.  Coop's valve does not close completely which were have been aware of since his 3rd surgery.  Because of it's lack of closure blood passes back through the valve or rather leaks back through the valve in the opposite direction than it should.  We have always known there would be a time when this valve would have to be replaced but thanks to modern technology, research and so much more that have invented and answer to our prayers……The Melody Valve.  Basically this will prolong or eliminate the need to replace the existing valve and the Melody Valve can be insisted through a cardiac catheter instead of open heart surgery!!!  Check this out:
The Melody Valve

 

So as you can see this is amazing!  I cannot tell you how exciting I think this is and how interesting!  The Melody Valve will be Coop's next procedure.  CMH has been using it for about 18 months now.  Their smallest patient to date weighed about 80lbs.  At 38lbs, Coop is much smaller than this.  They will consider the procedure for Coop at about 45lbs if necessary but currently he is maintaining well enough that there is no rush.  The catheter used to insert the valve is a 24mm "tube" that is inserted in Coop's groin area and pushed through the veins to the heart.  Coop's surgery last year they used a 12mm tube which left a pretty big hole in his leg so he and his veins also have to be able to handle the tubing to proceed with the Melody Valve.  Dr. Kaine insists there will be a time that Coop becomes fatigued or discolored and it is then that we will know it is time for the Melody Valve.  Coop no longer has to take his aspirin and we will go back again in 6 months.  It is so encouraging to know that there is no procedure in the near future and no open heart surgery anywhere in sight!