Wednesday, July 6, 2011

We're home....but I hope not for too long!!!

Yes, we are home, well.....home to Sugarhouse anyway!  Abby is feeling great, so they decided to let us go; but, we are under strict orders to take it easy and we have to go back for an appointment and a blood draw on Friday, then they want to see us twice a week again to moniter her a little more closely.  I am doing fine at my nursing duties, I'm not sure why I was so nervous, I feel much better about things now.  I even started her IV drip in her picc line with no problems.  Tonight I have to flush and put some Heparin in her extra two one knows for sure why they put a picc line in with 3 lumens??? Although, it is pretty cool looking!  We spent the morning packing up, talking to the doctors, saying goodbye to all of our favorite nurses and techs, playing monopoly, and then we met Abby's transplant surgeon, Dr. Kaza, for the first time.  I can't believe that out of all of the doctors and people we've met, we hadn't ever met the actual surgeon until today. He was awesome and spent the time just answering our questions and getting us ready and feeling confident for the surgery.  He told us that with Abby still feeling pretty good, he won't have to accept any heart unless it's the perfect one for Abby, he won't settle for anything but the best.  I love this!!  We want her new heart to last a long, long time! 

Here's something interesting........ a couple of days ago, we met the family of another 12-year-old girl that was also an active, soccer player, that got sick on May 28th and ended up in PCMC needing a heart transplant.  Her disease is different than Abby's, and she ended up getting her heart 3 days later...but without it, she would have died that night.  Awesome family, one that we will keep in touch with for sure, and they live right around the corner from where we are staying now!!!  There is also another girl, this one 13-years-old, she was a gymnast, that was at PCMC that is also waiting for a heart. Same kind of thing, from being completely healthy, to needing a new heart, we haven't met her yet, but I'm sure we will.  She's waiting at home too!  For a hospital that usually only does 8 heart transplants/year....this is very unusual!  Makes me wonder what's going on!!!  I love meeting the families of these "heart kids" and hearing their stories.  It makes me realize that we will get through this too and that we're not the only people going through this incredibly difficult thing.

Abby shocked me this morning.  The transplant team asked her if she'd be willing to attend a press conference on Friday that the Organ Donation Center is putting on to promote organ donation, and Abby said YES!!!   She didn't even care what they wanted her to do, she thought it sounded fun!  Ask her to be on TV and she's all over it, but you can forget about her talking to the psychiatric team!!!  I'm glad she's doing it, I'll let you know more when I find out more. 

For now, we're just going to relax at home.  When we got here I was able to do a few of the "normal" thinks that were on my list yesterday, and I loved every second of it.  I did unpack, not because I'm being pessimistic, but because I just needed to start over.  It seems like I every time we go to the hospital we come home with more and more stuff!!  But, it's fun, we love it.  You should see Abby's face when she receives packages and letters in the mail, it's awesome!  Thank you to everyone that has been sending us stuff, it brightens our day.  As soon as I get the call, I will update the blog, so keep checking in.......we're getting close :)

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