Sunday, August 8, 2010

August 8: Day +37

First off, it's GREAT to have the family back together.

Bella has been really rallying over the past 24 hours! She is ALL DONE with this ICU business. Today, we took her off her vecuronium, which is the paralytic medicine, and placed her on a non-narcotic sedative called precedex, which will keep her sedated while not sedating her breathing capacity. This way, as she comes off the paralytic, her lungs will start working again on their own so we can ween her off her ventilator!

Speaking of which, tomorrow is a BIG DAY for Daylon! They are taking out his breathing tube in the morning!!! YAY, DAYLON! Good job, big guy! Please say a prayer that the O.R. team does a GREAT job, and that his airway holds it own after they SAFELY remove that tube. Again, we ask that ALL YOUR PRAYERS GO TO DAYLON TONIGHT... tomorrow is going to be a very risky procedure, and we nothing less than the hand of God holding that tube as it is pulled out of his airway. Thank you!

Wait, save a couple of prayers for Baby Elle as well. She is the newest Junctional Herlitz EB baby to arrive for the study. We had the good fortune of meeting Elle's wonderful parents tonight upon returning to RMH, and we had a good, long, heart to heart about what this process has been like. They are scheduled to have Elle's Hickman placed tomorrow, but Elle is having a tough time right now. Please send Elle healing strength, and send her parents comfort and support as they wrestle with staring at this journey Bella and Daylon have been on and consider jumping in themselves.

Okay, back to Bella. We spent most of the day just adjusting meds to dial in the right amount of precedex to keep Bella from wiggling too much. A little movement is okay, but too much movement and her breathing tube could hurt her. Respiratory Therapy has found blood in her airway since surgery yesterday, which means her tube cut her throat just from bouncing around on the ride down to surgery and back. I wish we could somehow spray a baby friendly WD-40 on her tube, and let it just run down the outside of the tube, you know, like chloraseptic or something!?

Bella's new lines are working FAMOUSLY, and her blood pressure is recovering. Her heart rate is coming down as they get the dosage right on the precedex. Precedex tends to lower heart rate, which in her case right now is a good thing since it's been in the 170's/180's.

So, over all, things are getting better for Bella! If she would just pee.... c'mon PEE! Why ya gotta be so shy? :-P

Numbers under the hood are all normal, and frankly, not necessary to report anymore! That's pretty cool, right? Thanks for the continued prayers, and let's have a great week, shall we?

Fabulous socks of the day...


  1. Wow! I've went away out of net-shot for several days and come back to this! Go Bella, go! (uhh...literaly I mean!) Is this the proverbial light at the end...
    May the Lord make it so, and so we pray!

    And the Mantra continues, "There is a Balm, in Gilead...".

    Love from us all.


  2. First of all, those pics are Awesome! I love seeing Ali kiss Bella. Just precious. I'm so glad Bella is doing so well and that she finally gets to leave the PICU. That's so great. Go Bella! Good girl. Stay strong...continue to fight hard.
    Thanks for the update on Daylon. Lots of prayers tonight. I will definitely start praying for baby Elle as well. Does her family have a blog too?

    Take Care,
    Amber McLaughlin,CA

  3. What a thrill to view Bella's Blog after being away to have ankle surgery. Such wonderful news to read regarding Daylon and Bella's successes. My son and I did the pee dance for Bella, said some prayers for Daylon and Ella, too. Thanks for your posts.

  4. so glad we see "light at the end of the tunnel" !

    love you, bella!

  5. I haven't prayed in 20 years. I have been a follower of Jonah's blog since he was born and found you through them. I prayed tonight. I prayed for your little girl to pee. I just had my 4th on father's day.. my oldest is 5. I truly ADMIRE your entire family and believe with all my heart your little girl will be smiling up at you all soon.. Take care Bella and family

    Boise, ID

  6. btw.. I too admit to doing the pee dance with my family for both Bella and Daylon. It was the best dance we ever had!

    Boise, ID

  7. These pictures melt my heart. So, so happy.
    We are doing the pee pee dance here!

  8. Love, love, love the positive news!! Go Bella go!! :D Prayers for the safe removal of Daylon's breathing tube. May the doctor's be guided by God's hand. Prayers for baby Elle and her family, who must feel the weight of the world right now. May they receive the peace and hope that is being sent to them. Thank you for sharing the sweet pics of Ali giving Bella kisses, its wonderful to see the love between them! Prayers for you and Ang, may the awesome family you have started continue to thrive...and Bella, beautiful baby girl, will be well!

  9. What great news!! So, so glad that beautiful Bella is doing so well. I will continue to pray about her peeing, hope it works.
    Extra prayers for Daylon today and baby Elle. Too many EB babies out there. We have to find the cure soon!!!!!!!
    Lets kick some EB butt kids. So proud of you EB families going through this program. We are behind you all the way. Take care. Love you guys. Love Leah's Nana

  10. Prayers for a good day and a good week. Love the pic of Ali kissing her baby sister...too precious! Bella has to feel the love that surrounds her, and she has to be strengthened by that. God is good!

    A friend in NC

  11. Your words put me into action today as I drove past the church down the street, saw the food pantry sign and in my head I could hear your "voice" saying "what are YOU doing to help your neighborhood?" Since today was grocery day already it was easy to add more to my cart and drop off 4 large bags of groceries to the food panty in Bella's name. I thought of Bella specifically as I purchased apple sauce and crackers and threw in some crayons for back to school. Thanks for the encouragement to do good in my life.
    I hope today is a day of healing and progress for Bella and Daylon!

  12. Yeah! SO happy to hear things are going good for Bella and the Fam. LOVE LOVE the pics of Ali with Bella! And the ones with Ang and Ali :)
    Keeping you guys in our thoughts and prayers. And we will be praying for Daylon and Elle too!
    Love you bunches,
    The Vanderboom's

  13. Lynne, Bob, Jack and BenAugust 9, 2010 at 9:11 AM

    During the morning walk around the lake this morning, a beautiful butterfly smacked right into me, as if to say, "Get the heck out of my way." I thought immediately of Bella and her fighting spirit, and then logged in to read this. She is saying,"Get the heck out of my way, I'm getting outta this ICU!" Love it. Sending big prayers for Bella to pee and Daylon's extubation to go flawlessly.

  14. Praying for Bella and Daylon - thank you for updating daily - I think about y'all often.
    A momma in Tx

  15. Our prayers to Bella, Daylon, & Elle. I can feel the power of prayer's not always on our ideal timetable, but prayers are being answered! Yahoo! Go Bella, go God!
    Many Blessings,
    The Gleason's