The heart of the matter

Thank you for all who lifted us up in preparation for the meeting to discuss the results of Josie's heart cath.. 


The meeting with the cardiologist went about as expected.

Josie has in fact improved with the medications, but not enough. She is currently deemed inoperable for a complete repair.


We have a couple options, one being to keep her on the current medication and wait for better medications and options to show up, one being to do a partial repair/plus banding to attempt to take more of the stress off her pulmonary artery, one being to try the repair and hope (really not recommended) .


The recommended course of action is to keep her on medications and don't operate. There is an additional med that can be added to the mix when she is a bit older.


They don't want to band because her sats are already so low and that will only make it worse. Plus, she is actually thriving. She continues to grow and has been gaining weight. Since she is good and in no immediate danger they want to take a conservative route with her.


They did (already) get a second opinion from Colorado Childrens, which is the best for PH, and I will also send records to CHOP, LPCH/Stanford and a third specialist that I need to locate for a third, fourth, etc opinion . . .


So that is the scoop. It was sort of expected, but it is still an adjustment for us. We brought her home thinking "operable" and we are looking at something different.


The cardiologist did assure us her life will be much longer and better quality for being here and getting quality care, so we can stop feeling guilty about disrupting her life. That's good.


As I was driving to the Dr appt and a song came on Christian radio (which I sometimes get and sometimes can't) and the lyrics were interesting - about how God does not bring difficult things into our life because he does not love us. The refrain was "no good thing will he withhold from us" I'll be thinking about that one for a while.


I googled it - the artist is Sara Grove and I came in here:


I believe in a blessing I don't understand
I've seen rain fall on wicked and the just
Rain is no measure of his faithfulness
He withholds no good thing from us
No good thing from us, no good thing from us


I believe in a peace that flows deeper than pain
That broken find healing in love
Pain is no measure of his faithfulness
He withholds no good thing from us
No good thing from us, no good thing from us


The whole thing is here


http://www.youtube. com/watch? v=WyW4zi_ W4A8


Again, thank you for the support and for the prayers. It means so much to know we have warriors in our corner.