Rylie is still struggling with her oxygen levels today as we had to bump up her oxygen and volume requirements significantly this morning on the hi-flow machine. The good news is that Rylie has been able to maintain at this level all day. All of the doctors (and there have been many...pulmonology, BMT, ICU, infectious disease...) tell us that the primary issue with today's increase is the excess fluid in her body rather than a new infection. Rylie is compensating by breathing rapidly to try to prevent the fluid from entering into her lungs. An early morning x-ray showed she was doing a good job keeping her lungs clear, but that fluid is there waiting to creep in. The doctors have increased her diuretics trying to dry her out more. Again, all of this isn't a huge concern if you didn't just have your immune system wiped out. It is hard to watch her struggle so much. She played some in bed today but didn't have the energy to sit up for very long. The doctors have put her on an NPO status to limit her fluids which means no eating (not a problem as Rylie hasn't eaten a full meal in months) and no drinking (big problem as she would drink a gallon of water if we let her since she is being dried out so much). Confession: Lyle and I figure this is a "sometimes" rule and slip her a few sips to wet her whistle.
Please keep praying for our little Rylie. She is sleeping peacefully right now. We hope to have a more positive report tomorrow.
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.
4 comments:
We are praying for Rylie and you that His Spirit will quicken everyone with His healing touch and encourragement!
Ro 8:11 -
But if the Spirit of Him who raised Jesus from the dead dwells in you, He who raised Christ Jesus from the dead will also give life to your mortal bodies through His Spirit who dwells in you.
Dave and Full Faith City Church
oh Jade and Lyle, I would slip her a drink too. How could you not? We hope this unwelcome wrinkle smoothes out quickly.
I am reading and keeping up on your trials, hang in there.
love, sarah (and george and rowan and milo)
Boy..we hope this phase passes quickly....we are always anxious for updates and so appreciate all of them! love, Gary and Deb
Lots of prayers and love to little Rylie and her pit crew from CO Wallaces. We're hoping she'll turn the corner here quickly and that we'll soon be watching her on video, being Rylie Strong.
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