Day +56
Today is the third day in a row we are talking about being discharged from the hospital. On Monday and Tuesday we were all set to go only to hear "maybe tomorrow." Somewhat disappointing, but we certainly don't want to turn around and come right back like we did when we left two weeks ago. The good thing about it is Rylie will have her final ERT today! The infusion will be done in the hospital so we won't have to sit in the much smaller clinic rooms all day anymore for ERTs! (This might not seems like much, but you have to look for the positives when you have a long hospital stay!)
Rylie is doing good. She still needs continuous O2, but she is off of the hi-flow machine. Last night her tubing got kinked and she "desatted" pretty quickly, but bounced back as soon as we found the source of the problem. We are very relieved that her playful and chatty personality has returned after three or four days of being mellow. It was hard to watch her be so melancholy with very little interaction. Except for these recent days, Rylie has been upbeat and seemingly happy for the most part. We are so thankful she has shown so much strength through all this. Our remarkable little girl has pulled through so many times it is an amazing testimony to her will and fight and to the grace of God.
After a total of 68 nights in the hospital over a 70 day period, we hope to be updating from the RMH very soon!
Lyle
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7 comments:
We will wait expectantly for your next letter from RMH....but to have your cheerful and playful girl back is such a blessing. Gary and Deb
I can't imagine how hard it must be to see your baby "not herself". SO happy to hear she's coming back around!!! Can't wait to hear a "We're going home" post!
We are hoping and praying that you can get out of the hospital and to the RHM soon. It is good to hear that she is acting more like herself.
Todd, Nicole and Wyatt
Know the timing needs to "be right" to get back to RMH. Every finger and toe are crossed and my prayers are that will be happening sooner than later! Rylie -- you are a strong little girl and we are all so proud of you....hang in there! L&J - we're proud of you two as well! Hope you'll all be able to see some fireworks this weekend -- the ooooh and ahhhh kind! Love ya -- Jo
God is sooo good--we rejoice in your uplifting news today.
Happy 4th of July EVERYONE. It is comforting to know that so many folks are supporting and praying for Rylie, Jade and Lyle.
XXXX
Dick and Kathy
Praying that on the 4th we are celebrating Rylie's (and Gracie's) permanent independence from Unit 5D.
Today they were painting everywhere at RMH, so not the worst day to have been away.
Keep your spirits high, and we will see you guys very soon.
Uncle Mack
Hi. Thinking you are on your way to the Clinic this morning. Hope you were able to get some rest last night and that your morning chores (Rylie's meds!) went smoothly. We were OVERJOYED! to hear Lyle's message on the phone when we returned from Wichita and a delicious dinner with Gr'Pa Wendell, Mary, and the Ensz family last evening. This news brings a promising closure to our time with you this past week. Yes, Larry "cruise-controlled" through his birthday as we drove back to McPherson Tuesday! "There's a little song a singin' in our hearts" this morning, and love and prayers. L&B
p.s. Oops this may be a double post. Sorry, but we keep getting a "this page expired" so I decided to try again. Oh well.
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