Wednesday, July 28, 2010

July 28: Day +26

Groundhog's Day...

...is the best context for what life is like up here. The days just roll by one after the other and it is hard to tell what day it is. The past looks the same, and no one is giving us any future past "one day at a time." So, we live in the eternal present, moving from morning to afternoon, to evening, to bed. Wake. Start all over again.

Within that sameness there are little changes that are like blips on a radar screen. Bella has grown tolerant of her sedation meds and has become a bit of a jumping bean on her bed. It's a little freaky to watch, because it looks like she's getting electrocuted, which in fact is not far from the truth. Signals to move are reaching out through the fog of sedation and muscles are firing in the most haphazard, uncoordinated way. When you watch her vitals, they don't appear elevated, so it's hard to say that she's agitated, upset, or in pain when it occurs, but it is scary to watch. I asked about seizure activity as well, but the muscle spasms don't resemble seizure activity, her pupils look good, and her vitals are stable, so THAT is a big relief.

The good news about this is that as she moves through awake and sleep cycles, her activity is appropriate. There are hours at a time that she is "deep" and resembles the peaceful slumber we've observed over the past 3 weeks. However, when she's "light" she has been progressively more and more physically animated over the past 72 hours. So, the docs upped all her sedation meds by 10% today after we gave her close to 20 combined boluses yesterday on top of her continuous drips.

Here are the numbers:

Weight: 12.3 (good... down .5kg from yesterday)
I/O's: +124 mL (not sure how she's up on fluid and down on weight... but it's only up a whiff)
WBC: 5.8 (YAY! up from 4.0 yesterday)
ANC: 3.8 (YAY! up from 2.6 yesterday)
BILI: 2.3 (holding steady in the 2 - 2.5 range - a good thing - means V.O.D. is not progressing)
CSA: 389 (up from 297. again, no one can make any sense out of this as they have been lowering this drug over the past few days)

They switched 'pressers' from dopamine to norepinephrine. This drug will squeeze more fluid out of the blood vessels throughout the body without drying out the heart any further. We've also had to go back up to the full "stress dose" of hydrocortisone to attempt to keep Bella's blood pressure up.

On a good front, we went up on J tube feeds again today, so the more formula she gets in her j tube, the less TPN and saline she needs in her PICC.

On a sweet side note, it was Ali's first "Open House" tonight. It was really cute having mommy and daddy getting to see Ali's art on display at school. She was so proud. Awesome parent moment amid a lot of not awesome parent moments.

Gotta run; my battery is about to die. Thanks for your ongoing love and support. More tomorrow!

9 comments:

  1. hooray for the numbers!
    hooray for Open House!
    hooray for awesome parent moments!
    boo for a low battery!

    thanks for the quick update :)

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  2. Hey guys!
    We know that scary light sedation...no fun. Praying she's not too comfortable or scared under there. Just think, in a few months we'll be back in CA doing playdates with our two healthy toddlers, far away from the scary PICU and these horrible days. We love you guys! Prayinng for Bella and your family always, Jenn
    PS-My mom is down and in BINGO mode! She's gonna want to form a team...ya, know she will! :)

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  3. I am going to babysit ALL the Ringgold and Edling kids so the 4 of you can go out and celebrate...

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  4. thank you for the update! Thinking about you Bella doll :) Praying for the angels to watch over you tonight and for the Lord to keep his hands upon you, the machines, medical team and family. Goodnight lil beauty!
    nicole

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  5. Jack and Molly's NanaJuly 28, 2010 at 11:40 PM

    Sounds like a positive day for everyone! And put me down as Sara's backup for a parents' night out when you get home. I've had lots of experience, and can probably get you a reference or two.
    Hoping to read another great report tomorrow!

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  6. Yep - still out here praying for your sweet Bella even when not commenting. Thanks for the update - I'm praying that soon you will be able to be holding and cuddling your sweet girl!!!

    Kim M
    Waterford, Michigan

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  7. Gotta love those good numbers! Praying for better and better ones... Hope you have a good night of recharging, so grateful for the update! ...and Bella, beautiful baby girl, will be well! Love and hugs to all :)

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  8. Have been gone the last couple of weeks, camping all over California and no technology. I did hike to the top of a very beautiful waterfall in the Eastern Sierra's and had a long talk with God about Bella. So despite my absence here your family and Bella were always in my prayers. There was a moment of peacefulness after speaking with God that I cannot describe and cannot interpret, I can only hope that God was trying to tell me something good about Bella. I will continue to pray for her healing and strength for you all.
    Love and Prayers
    Russ, Jen, Cody, Casey, & Celeste

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  9. Been following your blog, praying for her new cells to pull her through!
    Story on 24-yr old professional inline skater with EB: http://www.ksl.com/?nid=148&sid=11639353

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