Friday, July 27, 2012

Processing…

This post is long over due, and although I have been giving small updates via Facebook.  (really mostly sharing pictures) I haven’t had the courage, strength or maybe the words.  I have had to process, and reprocess and accept all over again what we knew two years ago, really what we knew five years ago when Katy was safe inside me.  There have been tears, and sadness, anger, and nervous laughter. Decisions are being made and Mike and I are doing our best to keep life balanced.
Unfortunately Katy’s cath and MRI on last Tuesday (7.17.12) we learned that Katy’s heart is getting sicker and is much sicker than she lets on.  For the first time Katy had a rough time during her anesthesia and it was a bit scary in the cath lab with her sugar dipping dangerously low.  The cath also showed that Katy’s heart function is worse if not much worse then it was last year.  This was expected, but disheartening nonetheless. That said it made our choice to admit much easier. 
It took Katy a few days to recover from her little stint in the cath lab and we needed a picc line placed before we could start the Milrione which meant her being put back under.
A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, small,flexible tube that  is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body � the extremities. And typically the upper arm is the area of choice. (http://picclinenursing.com/picc_why.html)
Thankfully, Katy has bounced back to her smiling self, and is loving being the Rock Star of 8 East.  She is responding well to the Milrione  (we know this because of her BNP in her blood work)  Given that Katy is never symptomatic it is nice to see the numbers via blood work.  We have increased her overnight feed and she is tolerating the increased volume.  The team expects (hopes) to see a weight increase within a month, as much as a pound.  Given that Katy hasn’t gained an ounce in 2 years a pound would be jaw dropping. 
We are all adjusting to hospital life and making the best of a really tough unimaginable situation.  Mike and I are at our best we we are advocating for our girl and we make a great team.  They say times like this make or break you and thankfully it has made our marriage stronger.  We both looking forward to the future and still have lots of hopes and dreams that we will make it through this and it will one day be a distant memory. 
Patrick has been amazing!  He is passed from grandparent to grandparent…hospital to home and is so easy going and just the sweetest, most kind hearted little man. 
So for now we wait.  Waiting is hard, the unknown is scary, and the fact that life goes on and laundry still needs to be done is daunting.  But, we’ll do it because what choice do we have? 
As always thank you for your prayers and kind words, you donations and gifts. We could not do this without our village that expands around the world.  You get us through our days.  We love you and are so thankful for each and every one of you. 

Disclaimer:  This was written at 11:30 pm I hope it makes sense.

6 comments:

Melinda said...

I'm glad you posted Amiee, I've been thinking about you and your beautiful family.

Anonymous said...

I've followed your blog for a long time. I have no idea how I ever first found it, but have hoped and prayed for your family and especially precious Katy. It was good to find your new post this morning. Prayers are ascending for Katy for all that's needed to make her well.
Carolyn (in Las Vegas)

Stefenie said...

Praying for your family!!

Christina said...

love, hugs & prayers!

Sarah said...

Just wanted to let you know that you've got another family praying for you! I hope that Katy improves, and a transplant comes quickly!

Sharon W said...

Thinking about you all...we love Katy and we wish you all the best!! We are here for you for anything!
-Sharon Wyatt