Day +17
What a difference a decimal point makes! We have good news this morning. Rylie's WBC count went up to 0.2. We know it can still go back down but this is very encouraging after plateauing at 0.1 for five days.
Her 02 saturation seems to be better too although she is still dropping when she sleeps. The doctors think it is more related to upper airway congestion than to fluid in the lungs. They set up a humidifier for Rylie to breath in at night. It is similar to the blow by line but with more moisture and less oxygen. The humidifier is MUCH louder than the blow by line. I'm not sure how Jade was able to get much sleep last night with this thing gargling so loudly.
On another positive note, Rylie's liver counts have dropped in half since Wednesday. They are still considered high, but again very encouraging as the VOD scare has been put at bay. Which means no follow up ultrasound today. Yeah!
Two things still seem to been an issue: fever and fluid. Rylie continues to have fevers. A sign that she probably does have a virus of some kind. Her weight is also going up despite the increased diuretics. The doctors are monitoring these but don't see any necessary changes at this time.
All in all, we feel like we have stepped off of the trail along the edge of the cliff. Thankfully, Rylie stepped in the right direction. We can hear all of you cheering "GROW, GROW, GROW!" Have a great Memorial Day Weekend. Love to all.
Lyle
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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.
6 comments:
Rylie's a fighter. We're praying that the fever dissipates. We love you guys.
Jake, Jules, and Ben
Hi! Celebrating with you that Rylie is having a better day -- count wise. Hunkering down with you on those fever and fluid issues. Thanks for keeping us posted. So it's your turn tonight with the gargling vaporizer,Lyle? Sure hope it is the ticket for her congestion and oxy sat. issue. Peace. love and prayers. l&b
Woohoo! Go Rylie! We know you'll be caught up to us in no time. Keep up the great work! We miss you.
Love,
Gracie and family
.1 never sounded so huge! Now, after a very tough week, .2 seems tremendous! Why do we take for granted life's little miracles when times are good? I think you are all amazing and an inspiration to all of us. Love you, Donna
Hey Jade, Lyle, Rylie,
We are praying for all of you for a mircle. Some are prayin & fasting on a regular basis.
FULL FAITH CITY CHURCH FAMILY
You are in the prayers of many church families in West Virginia. Everyone is praying for renewed strength for Lyle and Jade and God's hand upon Riley. May the Angels surround you tonight and give you peace and comfort. Sending a dozen hugs to you all. We love you.
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