Broken Heart

I'm still trying hard to understand Cole's heart.  I 'thought' I understood it 13 years ago.  I just can't believe what was explained to me was not really the whole story.  Our family doc is getting his full records so he can help explain things to me since the pediatric cardiologist is 2 hours from us.  I can't just pop in for an appointment and getting them on the phone has been near to impossible.  I just have generic questions, but since I can't see the post op to know exactly what was in there I can't ask those questions very well.

The PC said he has a goretex (PFTE) monocusp.  The NP (that works for the PC) said the documentation they have says transannular patch with monocusp.  I'm not totally understanding if they both actually mean the same thing or not.  I understand what the patch is, but I don't know if they replaced his valve, patched over his valve or if it was never there.  Since no one ever said atresia, I'm guessing it was there, just maybe damaged?  After all my googling it looks like standard procedure for a standard tetralogy case is to do what they told me they'd be doing.  They'd patch the holes between the ventricles (he had 2)...at least that's what I was told 13 years ago...who knows now...I'll check for that too.  Then they take out the muscle build up around the valve that is narrowing causing the stenosis.

When Cole was in surgery they called us in the waiting room to tell us they thought they had finished, but had to put him back on bypass because his pressures were still too high.  They never explained what they did in that time, but the new PC's office says that's when the patch was put in place.  Makes sense.  But, why never tell us?  From what I understand, if reducing muscle is not enough that's when the patches are put on.  However, withing the first 20 years another surgery is always required and it's to replace the valve completely.  So even if they spared his valve it will be replaced.  The information I found shows that usually about 10 years out is when the leakage is too much.  Most kids are good until then, depending on their specific circumstances.  So, I guess if we make it 13+ years we're doing good?  Just wish we had known.

So, we'll have another appointment next Spring and do the full run of tests including, xray, EKG, echo, MRI and stress test.  Then, we're hoping they'll have a better idea of how well his heart is handling things, how much enlargement there is on the right side and when the surgery is coming.  For now, his xray confirmed his echo and he should do okay to next year.  Can't say I'm not still nervous, because for the first time in 13 years I am.

I'm trusting God.  I just remind myself of that and I feel better for a bit.

Lisa