Well, we finally spoke to the Cardiologist today...
Now I understand why it took awhile and why he wanted to call himself.
We don't have super straight answers yet.
The way I understand it...
The good news:
Her Holter was clear, no rhythm issues!
So....that means it is either something else going on in her body (thyroid, anemia etc) or her pulmonary valve has declined more.
* The Cardiologist wants to see her next week to do another echo and draw labs.
* He is guessing it is her valve.
* If so he would like to re-cath to try to open the valve again. This would buy us time.
* We need to buy time to help the valve to get bigger so they could place a larger valve (otherwise she could outgrow it in a few years and need open heart surgery to take out the old and replace it).
* If he feels like she needs it now they would try to do it via cath in stages...re-cath a third time and put in a stent to stretch the valve, then go back a few weeks later to place the new valve.
* Worst case open heart surgery for a new valve.
* Best case, we help her 'limp along' until that valve can get a bit bigger.
Strangely, it just feels peaceful to know we have steps forward. It is hard to watch her get so tired and to miss out on 'normal' kid stuff because she has to rest and to see those dark circles under her eyes.
So, Tuesday will be exciting! We are doubling up, well quadrupling up appointments for the girls (post op for Ravenna, blood draws for both, Cardiology, Hematology) but getting it all done and hopefully wrapping it up with some good girly time of some sort!!!
Right now we keep realizing that it is ONLY God that is giving us the strength and that it IS there for the next step...not for worrying about the what ifs but to surrender them instead. So we just keep on stepping!
The LORD makes firm the steps of the one who delights in him