Tuesday, December 27, 2011

What We're Up Against

Had a couple minute brain-picking session with Chaia's cardiologist.

I share the medical side here, knowing full well, that Jesus has, had, and will have final authority on where her story goes.

Here's where we stand. Chaia's heart still has substantial damage to it. But it has adapted well and with blood pressure and heart meds, it has regulated a new normal.

We have gotten to the point where all of her meds have been transitioned from PIC line to feeding tube with the exception of pamidronate (the experimental calcification drug). Once these have all been transitioned we can remove the PIC line.

Today wraps up the 12th week of calcification treatment. Chaia's 3 month scan is scheduled for next week. This is the biggie. If the pamidronate is working, the calcifications should have either stabilized or begun reversal. If the calcifications are worse, I don't think any thing can be done medically.

The 'H' word is still a distant thing on the horizon. But I'm proud of my girls for hanging in. In a week, we will have been in the hospital for 100 days straight.

One of the challenges since moving to the four-oh is that Shaina and I are rotating between sleeping in the hospital and in the RM house. So it has been a while since I have been elbowed in the ribs and/or kidney for snoring and we both miss that. We also miss our own bed.

But 93 days are down and we'll do another 93 if we have too.

Because we're convinced there's something miraculous taking place.

Keep kneeling.


Joanne Sadlon said...

I am often left speechless after reading your posts. I want to "preach" something awesome right back at you, but all I can say today is:

May God continue to bless Chaia with His healing grace. May you faith in Him continue to hold you up.

You are always in my prayers!

Beth Honnold said...

Something MIRACULOUS is happening...only through HIS GRACE!!! Praying for AWESOME test results next week!!!When we kneel, Chaia WINS!!!

Anonymous said...

I (too) am convinced there's something miraculous taking place.

And this is the confidence...
I John 5:14,15

Anonymous said...

I feel we should be encouraging you, but I always come away after reading your post as the one being encouraged by your words! I cuddled my 3 month old granddaughter, Moriah, ever so close while they were here...praying for Chaia and counting my blessings!
Love and continued prayers,
The McGurks

Anonymous said...

My thoughts and prayers are with you and all your families everyday! I agree with the rest when I say that after reading your posts you have encouraged me more than I feel I have encouraged you.

Continued prayers for all!


Steph said...

We're continuing to pray for you all! Thank you for specifics we can pray for. We continue to kneel so Chaia will WIN!

The Blake Family said...

We havnt and will not stop kneeling! Continuing to pray for that beautiful lil angel of yours and for you guys as well!

Amanda said...

Another 93 we will also do with you :) Praying in KY.