Tuesday, September 16, 2014


It's been quite some time since I've sat down to update.   Mostly we were busy having fun this summer and I didn't want to take the time to sit and process all that's been going on with Josh.  I think part of me avoids posting because I'm forced to really think about the seriousness of his condition when I write it all down (or at least the information I'm willing to share), and its much easy avoiding it.
Really, it's not all doom and gloom, but honestly our first visit to Stanford was very difficult.  To keep it simple I'll just say that the cardiologist explained in broad strokes what the process of transplant looks like.  It's not pretty.  It's not easy.  It's scary.
At that initial visit, I spoke with the doctor and nurse practitioner at length about Josh's history & his more recent symptoms.  They laid out several tests that they wanted preformed to help us decide whether or not transplant is a viable option.  One of those tests was a cardiac catheterization.  He had the cath in July & it went pretty well.  But the results showed some troubling findings that confirmed Josh's heart isn't doing very well & the long term expectations are very low.
That being said, today I took Josh back to Stanford to further discuss his case and the results of all of the testing he's had done in regards to transplant.  It's pretty clear that it's no longer a matter of "if" but "when".
It's taken me several months to wrap my mind around the initial consultation with the heart failure team & I'm feeling as ready as I ever will to begin the transplant process.  Lucky for us, Josh has a high quality of life right now so this process can happen at a somewhat leisurely pace, which we much prefer.    
Since before he was born we knew his heart condition would lead to transplant, we just never knew when.  We had always hoped it'd be when he was an adult, but it seems he'll be ready much sooner.  We still don't know exactly when his day will come, but know it's nearing.
Anyway, on a much happier note, tomorrow is Josh's 7th birthday!  We are incredibly blessed to be celebrating 7 years with him...something that was never a guarantee.  So despite our bummer situation, above-all we are celebrating our wonderful little boy and his awesome life!!
(I'm dumping some photos into this post since I'm not so good about regular posts.)

1 comment:

cici said...

xo Happy Birthday Josh xo

He looks like he could swim the Atlantic.
Whatever you are doing keep it up and I will Pray for a miracle for him