5/21 12:45 am - For the last 2 weeks, especially the last 4 days, Rebekah has averaged probably at least one 'episode' per hour. We are in the Greenville Hospital PICU and the only intervention so far that we have had was to bump up her oxygen level to 2.0 liters flow (at home we only used .25-.5). They have kept the pressure this high but decreased the actual O2 level to 50%. Rebekah has gone over 3 hours now without incident! This is a positive sign that her 'problem' is obstructive and we will be able to find a manageable home solution for it. (That's from me, not any doctor.) I am feeling pretty positive right now.
5/21 8:30 am - We went 11 hours without an 'event'! PTL! And she did have a minor one around 8am, but it was definitely obstructive and I finally got someone else to SEE that and agree. Still didn't get to sleep though because they won't let me feed Rebekah. The air they are pumping into her nose is supposed to fill her stomach and make it upset so she has been 'fasting' since 8 last night and is not too happy about it so lots of hunger cries all night.
Michael enjoying the cozy hospital room guest bed.
5/21 12:15 pm - Today hasn't been quite as positive. Rebekah had quite a few events between 8-10 while in deep sleep. Most were caught pretty early. She was put on a positive air machine too at a higher rate and it doesn't seem to be making that much of a difference. We've also noticed Rebekah's face and neck are getting really puffy. Hoping it is from the IV and not some kidney thing going on. Haven't talked to the doctor.
5/21 6:10 pm - We'll be at the hospital through Tue for tests. Tomorrow night is the sleep study. This morning started out with many mild episodes between 8 and 2, but she's been episode free again for the past 4 hours. kind of strange. I will be going home this evening and Michael will be staying. We're in 5617 in PICU at Greenville Children's Hospital and guests are welcome to stop by. Thanks for all the care and prayers!
Saying goodbye to Rebekah for the night. :-(
5/21 10:25 pm - This is Michael. Susan is home snuggling with four precious little boys. Rebekah has only had 3 episodes in the last 8 hours. This is a huge improvement from Tuesday and Wednesday. As Rebekah and I said our good night prayers, we thanked God for providing us with her Mommy and four brothers, incredible friends and family, Daddy's flexible and understanding boss and co-workers and health insurance. That may sound silly, but I realized today how much I have taken healthcare for granted. Children around the world die everyday from far more "curable" problems than Trisomy 18. My cup overflows with God's blessings. If we were ever to write a book about this experience, we should call it "Trisomy 18 Through Faith and Facebook". :-) Goodnight and God bless to all of you who are sharing this journey with us. Michael
This post on facebook resulted in some great conversation and I have to brag a little about my wonderful husband, so I had to share some of it here...
Helen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.
Shelley: Mike. you and your wife are amazing. I am in awe of your relationship with each other, your children, your faith, and ability to share your life so openly. Thanks for the inspiration.you guys are in my thoughts daily.
Helen: Michael - ditto what Shelley said. I have learned so much about myself and my own faith by taking this FB journey with you and your amazing family. I have prayed more since you started sharing your story with us and can now say there is power in prayer. Whatever God has as His plan for our lives in prayer you will find the answer or come to understand the journey. Thank you.
Ellen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.
Sheri: God is good all the time, Michael. Thank you for reminding us all of that.
Jeannette: Michael I love the name you would choose for your book :) God Bless you. We are looking at posibly going back in the hospital next week for more testing too. Wish we were closer. Have a good night.
Diane: Michael , All men should take lessons from you. What an amazing DAD and HUSBAND you are. Thanks for the inspiration your family has been to all of us following your journey. May God Continue to Bless you and your family. Hang in there, There are alot of people praying for all of you.
Michael: Ellen, your comment is right on. It reminds me of Psalms 20:7, "Some trust in chariots, and some in horses: but we trust in the name of the LORD our God." David doesn't say he doesn't use chariots and horses, but that his trust isn't in them. Likewise, we're using science and technology (healthcare), but our trust is in the Lord.
Jennifer: I love that verse too! We must lean our ladders on the only solid foundation....our Heavenly Father, all other things can falter and crumble.
Annie: That is a verse I often quoted about the chariots and horses when I was preg with my daughter Rachel who has trisomy 18 also! God bless you guys and give you the strength you need for this journey! We're in it too...with you =)
Tracy: Love the title of your book...how true it is. Glad that it seems that Rebekah is doing better and that Susan is getting some much needed rest. God Bless you all.
Christy: Michael & Susan...how awesome for FB and that you are willing to share your journey with us. Some people think FB is silly & why waste your time on it, but look what it can do. Spread God's love all over the world and connect lots of people. How many requests have been put out there & quickly responded to??? May God continue to bless your family and inspire and help others. It also helps us by staying in our prayer life to help others!
Can't wait to read that book!!! :)
Lila: Michael, you are just amazing. I am so blessed to know you and Susan!! Thanks for the update. And let me know when that book is about to go to print! Can I get an autograph from the authors??
Happy 1 Month Birthday Rebekah Budd! Sleep peacefully in God's hands!
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