Saturday, July 10, 2010

July 10: Day +8

Strap yourself down, folks, it's the ALI SHOW!!!

Hello world!

I am writing you from our desk in our bedroom at RMH having just come home from....



Grandma watched Ali for us, and like the Edlings, we left Bella for a little family respite. Ang and I can't even remember when we went on a date last. Shopping, dinner, and a movie (I accompanied Ang so she could see Eclipse again... she's sees the Twilight movies the first time round with her best friend Jen and the second time with me. I know you're dying to know what I thought of it so, it was better than the first one (not hard), but not any better than the second... not any worse... her dad continues to steal the show)

Freezing under the vent in Bella's room watching Germany take 3rd place!

Prior to date night, the whole family went and hung out with Bella, and Ali did crafts with yet another awesome organization called Blair's Tree of Hope ( Bella is continuing to do well. We are learning that much of this journey medically is what I call "chasing numbers." Labs come in at the start of each day, and "based on the numbers," decisions are made as to how much of what drugs to add/subtract/increase/decrease to keep certain key indicators of health in a healthy range. Because often times these numbers are only given once a day, the docs try one thing, then wait till the next morning, then adjust, then wait till the next morning, then adjust again, etc. This is the rhythm of care I observe day in and day out. So, we're a little high on this, so we back off on that. We're not seeing enough of this, so we introduce that in order to stimulate this some more. I know I'm being vague and general here, but we are balancing so many different medications for so many different things that if I got into the details, it might bore ya. I dunno. I'm a generalist; I like the big picture, so my favorite part of rounds is the assessment and plan at the end when the doc synthesizes all the lab numbers into a complete sentence that describes IN ENGLISH how Bella is doing.

Ali and daddy being goofy after bath time...

Right now, overall she is doing well, and the docs are not really alarmed about anything. The atelectasis is gone, but her CSA levels remain high. CSA is an immunosuppressant that is rather toxic, so while it is very important for avoiding Graft Versus Host Disease (Ali's cells turning on Bella's body and attacking it), it can also wreak havoc on the kidneys. Every drug metabolizes a different way in each person's body, so you start out giving a dose based on age and weight, then adjust once you learn how fast or slow the body processes it. Well, turns out Bella processes it really slowly, so it has been building up in her system over the past few days. So, the docs stopped it altogether for a day to let it work its way out before they put any more in.

Okay, there, I did get specific. That wasn't too bad, was it? LOL.

Alright, that's all for tonight. Tomorrow, Ang will do dressing changes and grandma will watch Ali so I can go to Brit's Pub in downtown Minneapolis to watch the finals of the World Cup! I am grateful for the hall pass, and feel like if I can get these kinds of reprieves over the weekend, I will have all the strength I need to power through anything that comes my way by Bella's side during the week. Go Holland!

What are you grateful for this weekend?

Good night.

From the sublime, to the ridiculous... I give you Ali.. no encouragement needed...


  1. Whoo Hoo, a date night! I'm so glad that Grandma is there, you guys deserve an hour or two together. Congrats to Germany today, the game was exciting at the end and I hope you have a great time at the pub tomorrow. I'm also pulling for the Ned...but don't tell Treisa (hehehe, oh wait, she reads this blog...) Much love to all of you in beautiful Minnesota, we talk about Bella every day together with the boys and we all can't wait for Ali's cells to grow and for Bella to be home with you at RMH, recovering.
    The Thomas Fam.

  2. Your daughters are fantastic...that Ali, though, she's a rockstar.
    Wonder where she gets it from? :)

    Yes, I saw Eclipse, as well, and am totally NOT a Twilight fan (just needed time away!). I love Charlie, Bella's dad ;)

    Love the happy posts, love those Ali pics...she makes me smile!

  3. I am so glad you got a date! I am even more glad that things are going pretty well.


  4. I'm so glad you get to get away for date night!You guys deserve it! Those pictures of Ali had me laughing out loud! She's such a hoot! Gotta love the sassy girls!

  5. Make sure you have a chit chat with the fellow that is on BMT service this weekend, Nicole. She just got back from Africa...part of it at...the World Cup!

    Keeping you all in our prayers,
    Marsha and Elizabeth (who is now back at the RMH, YEAH!)

  6. Jack and Molly's NanaJuly 11, 2010 at 9:50 AM

    Ali's pictures really made me smile; too bad the Academy Awards are done for this year - she'd definitely win for Beautiful Big Sister in a Dramatic Role.
    I know I'm not alone in appreciating the humor and amazingly upbeat mood in this post. Here's praying that the great progress continues. Just another cup of water in your marathon. Have a great week!

  7. I am grateful that Cody is getting better and finally going home today. Your family's story and faith have filled an ocean of cups. After being in here for eight days, I am truly amazed at your family's psychological, physical, and spiritual strength. Go Bella!!
    Love & Prayers
    Russ, Jen, Cody, Casey, & Celeste

  8. That is fantastic that you guys got to have a date night! Ali is adorable, what a ham, where did she get that trait from?...hmmm...:)
    Lots o' Love,
    The Gleason's

  9. Lynne, Bob, Jack and BenJuly 12, 2010 at 1:05 PM

    I am grateful for this, from your last post. "Life is not to be survived or endured. It is to be LIVED! Sometimes, this can be scary, this riding on the edge of the unknown. It can also be a whole lot more tiring than the predictable. That's okay. I'd rather die from too much excitement instead of too much boredom any and every day of the week."

    We love you.