Wednesday, August 4, 2010

August 4: Day +33


Another good day for Bella overall. We are still pulling a net negative 10 ml/hour and she is tolerating it, but we have had to maintain her norepinephrine at .12, which means no feeds. This is not the end of the world as she still gets all her nutrition through her IV, but we don't want her belly to be on a vacation for too too long if we can avoid it. Let's get to the numbers:

Weight: 12.1 (Down from 12.5 two days ago...LIKE it!)
I/O: -124 (Yay! gotta get that +900 from Sunday and Monday OFF! She evaporates about 200mL off a day on her own as well, so we're really more like -324ish)
WBC: 8.0 (ehh, back down a little but again, no cause for alarm)
ANC: 5.5 (same here)
BILI: 1.4 (YEAH! GREAT NUMBER, BELLA! Lowest since onset of V.O.D.)
CSA: 166 (YAY! FINALLLLLLLLLLY getting on target. Dr. Tolar said we can be as high as 200, which means that after an entire month, we finally are at or below our target for CSA. Remember, CSA is an important immunosuppressant to help prevent GVHD, but it is also HIGHLY toxic and making kidney recovery very difficult)

Soooo, good start to the day, right? Indeed. We'll take it.

The only excitement of the day was when we noticed that one of her biopsy incisions was still bleeding... two days later! Very interesting, this being on two blood thinners. I had the nurse call in the dermatology resident who took the biopsies. I asked her to pack the incision (which is really a cylinder of missing skin a few millimeters wide and quite deep) with more gel foam, which helps to clog the wound essentially, then eventually dissolves. She shoved a BUNCH into the wound (Bella did NOT like it... heart rate jumped to 188...yikes!), and the wound was STILL leaking. So, I then put a dressing on it and literally held it down with direct pressure for 2o minutes before dressing a second dressing over it, then wrapping the entire thing like a mummy. I had to wrap pretty tight, which concerned me since it was her big fat thigh that is chunky in the middle, but tiny at the knee. When you wrap from fat to skinny with a lot of pressure, it can create a shearing pressure on the skin, but we had to get that leaky faucet to stop leaking, so whattayagonnado?

Mommy and daddy snuck off for a quick dinner out and a little shopping tonight which was nice. Mommy got a bathing suit for this weekend's sojourn to the cabin and I shopped for a new phone. DROID X, baby! Man that thing is AWESOME. I can order it Saturday, when I am officially eligible for a new phone. When I get it, I'll have to shoot some HD video of Bella's room for ya! I simply can't believe you can shoot 720p FROM YOUR CELL PHONE. Wish it could start the coffee in the morning. Is there an app for that? :-P

In other news...

More great pics from the lake...

Today, was turtle race day in the nearby town of Nisswa. Ali LOVED the turtle races at the hospital in late June, so when she found out there would be MORE turtle races in her future this week, you should have SEEN the bright-eyed look on her face! Also, Ang called Lynne at 8pm tonight to say hi to Ali, only to find that Ali was already in bed SNORING.

Ladies and gentlemen, Angelique and I are pretty darn sure that kid has not been to bed by 8pm since... well, 2009! Ang asked Lynne what was her secret, to which Lynne replied, "It's the magic of the cabin." Ang immediately replied, "CAN YOU BOTTLE IT????" LOL.

Please pray that Bella's V.O.D. continues to cool down. I personally think that the V.O.D. is what is responsible for her systematic vasodilation and hemodynamic lability (did you like that? I tried to use ALL my scrabble words in one sentence that I've picked up from spending my last month on rotation here in PICU... hehehe.) Seriously, though. Her blood vessels are inflamed, and since they are bigger, they can't hold the same pressure up.

Second, PLEASE PRAY FOR PEE!!! :) Maybe, if everyone who reads this dances the pee pee dance at exactly 8 am eastern standard time, a collective energy wave will roll over Bella and jump start her kidneys to get the pee a flowin' again. Maybe.

Alright, gang. Signing off for the night.

P.S. Remember when I charged you to step up and do one new thing to better your community?

Did you follow through, or just have a good idea that has fallen to the back burner of your busy life? Have you taken action yet? If not, will you recommit to be in action TODAY? It's one thing to MAKE a decision, but another to MANAGE it into existence. Please. Let our journey up here cause more than strong feelings in you. Let it cause strong ACTION. Do this, please? Thank you, and may God bless you and your family.


  1. We the Coopers are all about the pee pee dance!
    We will chant for Molly and Bella!

  2. Up at 1am listening to a thunderstorm hitting the neighborhood hard but loving the sounds. I'm still thinking of you guys and cheering for Bella. Did you know that thunderstorms in NC sound different than MN? I think the thunder echos more off the lakes or something so the thunder really rolls through the sky up there. I hope Bella's kidneys kick back in soon. Hmmmm, dip her hand in warm water like old camp pranks?
    Raleigh, NC

  3. When talking with Angelique today we asked if Bella had any pee today, she said none today. Carolyn said we will pray for pee and, being Catholic, said "I wonder if there is a Saint for that".

    Well ... no, but it turns out there is a very important Saint for kidney disease, St. Benedict. Most may know he founded the monastery in Monte Cassino under the Rule of the Benedictine Order but is also recognized today as the patron of those suffering from kidney disease.

    So if you are one who also prays to the Saints, include a prayer to St. Benedict asking for his help in preventing damage to Bella kidneys and to restore their normal functions.

    In searching for St. Benedict I found this:
    "Ask, and it will be given to you; seek, and you will find; knock, and the door will be opened to you. For everyone who asks, receives, and the one who seeks, finds, and to the one who knocks, the door will be opened." Matthew 7:7-8

    Bella's grandpa Rodger.

  4. Jack and Molly's NanaAugust 4, 2010 at 11:29 PM

    Another upbeat blog - I LOVE it.
    I'm so happy for Ali to have the opportunity to spend some time at the lake; it's definitely all that fresh air that's getting her to sleep early. My prayer for you tonight is that NEXT August 4th, you'll have two beautiful, healthy little girls playing so hard that they nod off while eating dinner.
    And the Matthew scripture is one of my favorites. Thanks, Grandpa Roger!

  5. So excited to see these good reports for your precious Bella! I'm praying for that day when you can be back on 5D and snuggling your little sweetheart. That will bring on a happy dance!!! So, about that pee pee dance today, it would be a first and I'm thinking my co-workers could be weirded out - so I'm committing to a pee pee prayer!!! Strictly praying for pee for Anabella and that's it (at least for that specific prayer at that specific time!!)
    Love that Ali is enjoying herself at the cabin with special friends.

    Kim M

  6. Praying for pee. I didn't think I would ever type that sentence in my life, but that is what I am doing. It is now 8 a.m. ET and I will dance,and I will pray for pee. Sure hope beautiful Bella will continue to improve.
    Glad that Ali is having so much fun at the cabin. That fresh air will do it everytime, makes you sleep like a baby.
    Take care guys and give Bella a hug for me. Love you guys. Love Leah's Nana

  7. Praying the V.O.D. cools down, and praying for pee!
    In CT this wwek (20 year HS reunion), many old classmates send their best wishes as well.
    Lots of Love,

  8. I am following through. Making the world a better place in my quiet corner. :o) I have been more appreciative of what others do for me. Small, but it makes a difference for me and for them.

  9. Lynne, Bob, Jack and BenAugust 5, 2010 at 8:55 AM

    Adding to the prayers for pee. We also ask that any kidney karma we've earned by giving one away be immediately and totally passed on to Bella. I see butterflies on my walk every morning and send each of them along with prayers and intentions for our girl.

    Noticed in the pics that Ali's hair is crazy! After 6 years of just ruffling up boy heads before we leave the house, headbands and ponytails are clearly not a parenting strength. But I gotta love those curls. Mani-pedi on deck for today, if I can get her out of the lake.

  10. I am following through! Your sweet Bella has caused action. :)

    Continued prayers (new ones for pee) ;)

    Denise WI

  11. Love that picture of Ali out on the deck/porch. She's reached the one month mark, so I'm sure the VOD is fading fast! Love being here with you guys, Jenn