Georgia's appointment was good and hard at the same time. I always go in hoping for answers and that they will see what we have been seeing and this time they did.
Basically, her pulmonary valve is reverting back to what it was pre-surgery. It is still better than the surgery in September but the Cardiologist said that these cobbled together pulmonary valves (she doesn't really have one, it is made of dacron sewed into the nubs that should have grown into pulmonary valves when her heart was forming), are very elastic and sometimes do this.
So, he said she needs a pulmonary valve replacement "pretty soon". The problem is she is growing so slowly and is not big enough to have the surgery via catheter (versus open heart) yet.
He thinks she is have heart rhythm issues so we are doing another monitor to try to catch what exactly is going on. After the monitor (whether we catch anything or not), he is starting her on some medication that will help her heart to squeeze better and should help with the rhythm issues.
Then we start meeting every 6 months or sooner "if something wild and crazy happens" to see how her heart is holding up.
In the grand scheme of things there are parents with heart children who walk through so much more than this. Even knowing that, it is so hard to know that her hear is struggling and that she is now an "atypical" Tetralology of Fallot patient needing more intervention and care....I have to remember that the Lord is the one who holds and cherishes her heart with everything in Him...and mine too.
The LORD is close to the brokenhearted and saves those who are crushed in spirit