So long to anticlimactic. Lyle called me early this morning to say that Rylie somehow got caught up in her tubes last night and pulled out her Hickman catheter. We're waiting in Rylie's room right now for the doctor to take Rylie to the O.R. for surgery. We're discouraged, but it sounds like transplant will still happen today. For now they have rescheduled it to 4:00 PM.
Rylie has had some issues with intubation recently, so please pray for a smooth sedation and surgery today on Rylie's special BMT day. Also, pray that Rylie isn't exposed to any germs while she is out of her room. They'll put a special filtered mask on her, but I'm not sure how successful that will be since she has never had to wear one.
We'll post again once we have more news.
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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.
7 comments:
Hi guys. Lyle called a little bit ago. Gee whiz. Know these are anxious moments. (And, no you and Rylie didn't need this!) Things have been going so well (Rylie has been such a good sport about learning to maneuver with her "tail") that we can only hope and pray the surgery to re-seat the catheter will go smoothly and the transplant procedure will happen without further ado later this afternoon. All our love, L&B
We're praying that the sedation goes better than the last and that they can get her catheter back in with no trouble. We're also praying against any germs she may come in contact with outside her room. We're praising God that the day has come for her transplant!
Sending hugs to you guys,
Jenny
Ack! So sorry! These kids just have way too many tubes. We're praying for you!
All of us "down the hall" are thinking of you all.
Darn, you didn't need any more "excitement" today. We're praying for a safe sedation and surgery followed by a nice-and-boring BMT when all the factors are ready. Hopefully that will be soooner than later. Love to you!
The whole department here is awaiting your updates and smiling at the video of that ridiculously cute little redhead! :) What an amazing little girl. Hugs to all of you!
Janell
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