Thursday, July 22, 2010

July 22: Day+20


Stable and Cute... continues!

It was a quiet day for Bella (at long last). We had a little action in the morning with unfortunately yet another new respiratory therapist who was on autopilot. Some day, I feel like we'll have met and worked with everyone on the unit. On that day, I'll either be happy because there will be no more teaching, or sad because we will have been on the unit so long that we had the occasion to meet everyone who works there!

Morning rounds was another case of good news / bad news.

Here are the numbers:

Good:

Weight: 13.7 (DOWN .2!)
I/O: +100 (closest we've come to net zero or fluid loss since who knows when)
Creatinine: .53 (We've finally reached our target of .58! YAY!)
BUN: 16 (best level to date - yay dialysis!)

Bad:

WBC: 3.1 (still falling, but to be expected)
ANC: 2.8 (still falling , but to be expected)
Bilirubin: 5.6 (has doubled in two days)

From BMT point of view, things aren't the greatest with counts, but no signs of GVHD, and wound cultures continue to come back negative for any fungus or bacteria, so, we'll call it a draw?

From GI point of view, Bella was stable enough to start defibrotide today. PLEASE pray that:

a) it works
b) it doesn't give her a stroke

Her right leg changed color overnight to a greenish yellow from the increase in bilirubin and she officially looks jaundiced. What kills me the most is that it is day +20, and I'm pretty sure it was day +12 that we first heard about defibrotide. By day +13, we were ready to add it, and we had to wait 7 LONG days and watch this disease get worse before being allowed to treat it with THE ONLY KNOWN drug that can prevent it from killing her. That is so hard to deal with. It just bites at me heels all day long. I would punch the desk in anger, except I am simply too exhausted to do anything more than type right now.

From nephrology (kidneys) point of view, we are happy in that neither the dialysis machine not her Hickman line are not clogging, and Bella is tolerating continuous dialysis. I think we will finally see some fluid off of her in the next 48 hours should all things remain stable. Nephrology is happy that she is on defibrotide because, as an anticoagulant, it lowers the risk of the machine or line clogging even further... so long as it doesn't give her a stroke. The sad part of nephrology is that her kidney condition was escalated from "acute renal insufficiency" to "renal failure" in rounds this morning. She is totally dependent on dialysis to survive right now. Not gonna lie, it's pretty scary.


The newest tube in Bella's life... a heating blanket to offset dialysis cooling her body temp...
By about 11:30 am, I could tell I was running out of "health points," (like on a video game!), so I called nanny to come in and relieve me since it looked like it would be a quiet rest of the day for Bella. Wound care was done yesterday and doesn't have to be redone till Saturday at the earliest. We redid her headgear completely this morning, so that will be fine for a while now. So, I came back to RMH and promptly climbed into bed for a nap. 3 hours later, my body told me that if I wanted to be at rounds tomorrow morning healthy, I better not plan on leaving this room. So, I listened, and I haven't. I can feel a cold right outside the doorstep, and I am not opening the door to let it in! Nanny watched over Bella during the afternoon, and mommy went over after dinner while nanny and Ali played BINGO at RMH. I'm really grateful to have nanny's love and care around at this time.

Now it's time to get back to bed. Just didn't wanna leave you hangin'...


Story time for Ali!...

Finally, Angelique, Nanny, and I are repeatedly moved and touched by the beauty and generosity of your comments. They're like a V8 for our spirits! Thank you for them, and please keep 'em coming. They help us more than these words can convey.

Good night and God bless you.

22 comments:

  1. Well, that's good news that they are able to finally give her the defribrotide. I am praying that it works and does not give her a stroke. I'm sad to hear that her small body is now dependent on the dialysis machine but I pray that her kidneys regain their health. I will continue to keep the hospital staff in my prayers as well so they may be guided and inspired to know how to best help both Bella and Daylon.
    Thank you again for taking the time to update us on Bellas condition. Please get your rest and let your body relax so you can continue to be at your best to help Bella. Stay strong!!

    Take care,

    Amber McLaughlin, CA

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  2. So, it's official...I wait till after midnight in Arkansas (don't know if y'all are in the same time zone...wait, I just wrote Arkansas and "y'all" in the same sentence, confirming any Arkansas stereotypes one may have) ANYWAY, I wait until after you have posted to go to sleep, allowing my mind to drift to sleep praying for sweet Bella, and yes, imagining her one day walking down the aisle, EB-free alongside her Daddy...the tears flow. Praying fervently in Central Arkansas. We love y'all!

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  3. Thank you so much for the update! I too wait for your updates daily, like Stephanie metioned above...I have family in NC onboard reading the blog and praying with great hearts. It is very upsetting that the defribrotide could have technically be given to her day +12...its a dagger to my heart :( I'm happy to hear that you were able to catch up on rest....I continue to think more often than not about Bella...I find myself sharing Bella's journey with whoever I come in contact with...the more the prayers...the more the prayers are ascending to our Lord! Bella is so precious to me...my Faith and belief doubles daily...I BELIEVE that God is watching over her and is touching her kidneys and liver...I BELIEVE!!! I pray that the angels protect her tonight and keep watch...I pray that her kidney condition improve. I'm thankful that the dialysis machine exists and is working away. I pray that her little body continue to fight and stay strong! I love you Bella Doll! Sleep tight and know that I think about you and pray for you more than you can imagine. See you tomorrow!
    xo
    nicole

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  4. I'm in very good company...the last few days have also caught me up until you post! Thank you for keeping us connected, when you must be so very tired. It is a blessing that it was a relatively quiet day, and my prayers tonight also include a night of peaceful rest for you. May tomorrow bring renewed hope and better numbers...and of course, as always, Bella's Prayer...your beautiful baby girl, will be well. Blessings to Ang, Ali and Nana...sleep sweet all.

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  5. Jack and Molly's NanaJuly 22, 2010 at 11:56 PM

    Like the others, I wait until I've read your latest post before heading for bed. I'm so happy you were able to get a nice break today while knowing that Bella was resting comfortably. The cozy picture tonight made me smile...and yawn. Let's hope you all continue to have "uneventful" days and that those numbers become more normal with each hour. Thank you for your detailed updates; I think your team appreciates them as much as you appreciate your team!

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  6. Thoughts and prayers are going out tonight as you all rest and each morning as you all rise! We have been sharing Bella's journey with our own friends and family and the prayer chain is longer and longer!

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  7. I love uneventful days! We are in San Diego for the weekend. I was just kicked in the face by mollys wild sleeping. Its 3:19am And I had to log on for my update. Still working on sleeping and praying at the same time. Love to everyone.

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  8. Defribrotide will WORK!! Her cell counts will INCREASE!! Things will IMPROVE!!

    Keep (all if you) hanging in there, with all your strenghts. God will reward your faith!

    Praying for you all the time.

    Carla and Matilde, from Portugal

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  9. We too are praying that this will be the answer to all our prayers. Please know that we are lifting you up in prayer all the way from South Florida.

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  10. Thank you for the update. I wait for my Bella update like some of the other posters have posted. I'm praying for a medical drama free day for Bella today. Many, many thoughts and prayers for you and your family.

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  11. I can't start my day until I read how beautiful Bella is doing. So glad that she is still stable and cute (the cuteness always) but so sorry about the renal failure. It sounds so scary but it will turn around.
    Glad that you're taking care of yourself and keeping that cold away, and thanks for not leaving us hanging!! Love you guys. Keep the FAITH. God Is Good!!! Love Leah's Nana

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  12. I am so glad you got to rest today and I pray for another quiet day tomorrow (today)!

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  13. While reading this post, the words of an old hymn came to my mind. I hope you don't mind my sharing the words with you. Perhaps you know it.

    "He giveth more grace when the burden grows greater;
    He sendeth more strength when the labors increase.
    To added affliction He addeth His mercy;
    To multiplied trials,
    His multiplied peace."

    "His love has no limit;
    His grace has no measure;
    His pow'r has no boundary known unto men.
    For out of His infinite riches in Jesus,
    He giveth, and giveth, and giveth again!"

    Praying today for that wonderful grace to strengthen and sustain you. And, as always, praying for healing for your precious Bella!

    Susan
    A friend in NC

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  14. thanks for posting your updates in simple English. ;) A lot of us don't follow medical jargon too well (but that isn't a complaint on my part!).

    Blessings on you all and especially sweet baby Bella.

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  15. Lynne, Bob, Jack and BenJuly 23, 2010 at 9:13 AM

    Love stable and cute, and love the hat. Leave it to Bella to be fashionably fabulous on dialysis!

    Continuing to send prayers and intentions that the defribrotide will work, that her body will tolerate it well and that her kidneys strengthen and heal. Praying for rest and well being for you as well. And, as always, sending love.

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  16. We both were thinking of you guys yesterday and desperately hoping you were able to start the difibrotide... so this was great to hear!
    We love you and are praying!
    The Vanderboom's

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  17. y'all are in my prayers, Tim.
    Sam B.

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  18. I've been reading for awhile now (and bought your book...looking forward to reading it!), but haven't commented. I always feel like I come up short when trying to find something to say. Yet I know that whenever I posted something on my (now defunct) blog or even on FB, I enjoy getting comments. And how much more do you need that with all you're going through! So just know that I'm here in cyberland, reading your story and praying for your Bella. I enjoy your writing and your desire for competence and efficiency and knowledge.

    Blessings,
    Amy

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  19. Hi Tim and family. I have been reading all of your daily reports about Bella and I wanted you to know that you are all in my thoughts and prayers every day. Bella is lucky to have such a wonderful family and I know you all feel blessed to have her in your lives. She is a strong baby! I just wanted to tell you guys that there are lots of people thinking about you and sending you love and positive energy. Hugs from San Diego.

    Jania

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  20. Many prayers to your family and to sweet Bella!
    Karen in Ohio
    (friend of the Coopers)

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  21. I have 2 family members with EB, my dad and my brother. My dad had a simplex version, my brother has a more complex version. I have seen the anguish this disease causes. I will pray for Sweet Bella and for God to give your family strength to endure.

    Lisa
    Illinois

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