Day +13
Rylie's congestion has made it hard for her to breathe the last couple of days. Her oxygen saturation have been lower which has certainly got the attention of people around here. Rylie's room has been a busy place. She has to have oxygen while she sleeps, and at times when she is awake. She is not wearing an oxygen mask, but they have the oxygen dispersing into the air though a device on the end of the oxygen hose. The fancy medical device is a paper cup. We put the cup by her face when her saturation level drops. She is being continuously monitored. It is scary to watch her struggle, but we are hopeful that she will be able to cough this junk out soon. She has had two nebulizer treatments to help open up her airway in hopes she will be able to cough up more mucus. We suction out whatever we can, but it seems to come back very quickly. The doctors have increased the amount of diuretics, again, and may start a second diuretic today. This may help decrease the amount of fluid in her body to create the mucus. We're really looking forward to when Rylie wants to play more. Right now she mainly wants to sleep. We don't blame her. She has also been running a fever through this so we pray there are no bugs growing in her.
Grandma left over the weekend, and now Rylie's aunt Jordie is here. We're lucky to have so many willing hands to come help. I haven't had to do my own laundry for several weeks now. It's nice.
We're sending love from Minneapolis.
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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.
4 comments:
You're in the hands of the best professionals and the prayers of so many more, Rylie and family. We'll pray that Rylie's using the sleep to build up her strength and fight off the fever and flush out the gunk. I hope you guys can get some rest in shifts as well. Love from CO to you!
Hey guys. Sorry to hear all of this. If it is ANY consolation, we've been experiencing very similar issues down the hall in room 505. Lots of mucus in the throat and a hard time getting it all out.
Yesterday we had an O2 desaturation event. Very scary, but a reminder to keep your eyes on her pain med levels and her demeanor, not to mention her O2 sat levels. Especially pay attention on ERT day and talk to the RN about potential benadryl/pain med combo issues.
We're sending love and prayers to you and Rylie from down the 5-D corridor.
Gracie and Family
Hi L,J,R & sister Jordie. We just want to "ditto" the post from z.o.k.s., which puts our thoughts in focus so well. Thanks Jade, for, again, taking time to keep us updated. love and prayers, L&B
Ditto from us as well. Know this is a tough time and may the long-distance love, support and prayers of family and friends sustain all three of you! Love and hugs -- Jo and Leonard
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