Day 0
Rylie was finally taken into surgery at 12:00 today, and after the doctor told us the procedure would take 30 minutes, it took over 2 hours. As you can imagine, we were thinking of every terrible reason why it was taking so long. Finally, we got word that everything went okay, and the reason why it took so long was because it took Rylie awhile to stop bleeding, but it was nothing to be worried about. After a quick stay in the recovery room, we went back up to Rylie's room on the BMT unit, and Rylie went back to sleep. The chaplain came by for a blessing service over Rylie, the cord blood, and transplant. We waited for a couple of more hours for the cord blood to arrive. When it got here we prayed over it and admired the pretty color. It looked a lot different than normal blood. It was cherry red, almost fluorescent. Finally, Rylie was hooked up to her new cord blood. The line was opened at 6:00. The last cells were infused at 6:26 when the nurse closed the line. The preservative they put in the cord blood is DSMO which causes the blood (and now Rylie) to smell like creamed corn. It's supposed to go away in about 24 hours. We hoped Rylie would wake up for the transplant, but the premeds they gave before wiped her out. She would open her eyes from time to time, but the poor girl is exhausted from the chemo and unexpected surgery today.
She's still sleeping! I'm really hoping she doesn't get her nights and days mixed up since I have night duty tonight.
We'll download photos and post soon. A huge thank you to everyone who has prayed for Rylie today. Keep praying, because the job isn't done yet. We need Rylie's body to accept these new cells and rebuild her immune system.
We're finally done, and tomorrow we'll start counting up instead of down. It feels good.
Followers
About Me
- Rylie Suzanna
- My favorite things are chips and salsa, swimming, and music. I also love being spoiled by my family. Since being diagnosed with Hurlers in November 2007, my parents have set up this blog to update friends and family on my treatment, as well as my latest tricks.
11 comments:
We are so grateful for the news so far...but the prayers will continue. Poor little gal...can't wait to see her smiling face again on the blog. Blessings from us..Gary and Deb
Grow Cells Grow. It's all in Gods hands now. We are praying for those cells to grow fast and for the Chemo effects to go away fast too (well.......except for that her hair will fall out but, that can't be helped). Tell Rylie to stay 'strong'.
I've been watching all day, thank goodness that you're counting up now. I like her muscle pose, that's adorable. Now, for the miracles, bring em on.
So glad we can start counting up now! We're echoing sarah's prayers for a miracle! Rylie is so precious and dear to our heart!
Hopefully she'll sleep well, right on through the night for you, Jade!
Love,
The Wards
Great job today Rylie! Grow! Grow! Grow! Grow! (That's the Gracie clan chanting to you down the 5-D corridor)
Way to go Rylie!
So down the hall, we'll be smalling like creamed corn at around 1 pm. We'll be thinking of you guys of course as we walk this path along with you.
Love,
Gracie, Sarah and Jim
Hope is such a great thing! I am looking forward to hearing about Rylie's renewed energy.
"Today why not give thanks to God for everything he has done" (Check out this audio: http://www.coachdungy.com/assets/audio/06GivingThanks.mp3)
T, P, B & S
Miss Rylie ~ Stay STRONG! We are praying for all of you. Thanks for sharing your updates. You are in our thoughts!
The Hilgers Family
Congratulations Rylie! Happy Rebirthday! Grow Cells Grow!
We know you are into this next waiting phase (the one you had been waiting for)-- the "+" days--and you're watching all kinds of things going on now with Rylie's counts, vitals, etc. in response to the transplant. All par for the course as they say. I can only imagine the fatigue. Hope Rylie and you all are enjoying some "perky" moments, too. Prayers for strength and calm and hugs all around. love L&B
I know you guys must be so tired, but don't become discouraged! I do not know your pain, I can only imagine. God is a great God and keep leaning on Him!
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