Saturday, July 17, 2010

July 17: Day +15

A rare glimpse of Bella's face today, even if she's getting her nose suctioned...


I'm tired. I just got home from a wonderful date night with Angelique where we were practically swept away in a Tornado warning. Good times! We had fun nevertheless. (Pssst... tomorrow - the 18th - is Ang's birthday, but don't tell her I told you so!)

It is the weekend so things are a little quieter up in the PICU. Rounds had a smaller herd presiding. I had a tough time being the only one getting up this morning. Angelique got up for a little bit while I was getting ready and we got to share some peaceful quiet time together before the house awoke to the excitement of the weekend. Ali got to go to the Como Zoo today on a field trip. Mommy got a hall pass to go shopping and get a pedicure. Nanny helped with cleaning and laundry while daddy attended to Bella.

A really funny pic of "Evil Bella" from Logan's BBQ before transplant...

Bella is now going to get daily dialysis till they can get her fluid retention under control. Yesterday, she was a net positive 700 mL on the day for the 3rd straight day. Again, folks, that is like pouring more than a 2 liter bottle of fluid into her tiny body over 3 days with pretty much NONE of it getting to come out. She has swollen to such a size that she is hardly recognizable even compared to photos from the day she was intubated which was on July 4th.

So, that is the bad news, but the good news? Bilirubin actually DROPPED over night, and the docs all think she is passed the biggest threat of VOD! Her bili was back down to 1.1 overnight.

WBC = 7,400
ANC = 6,400

Wooo hooo! The docs are using the word "engrafted" now to describe her. Yay! Now, help those kidneys and liver!

Thanks for all your prayers; they are working! Please keep them coming!

Good night. Tomorrow morning: pancakes for Ang!


  1. Tears of joy tonight.
    What a perfect gift for Ang's birthday...go Bella :)

    She looks just beautiful to me.

  2. Whoo Hoo Bella and Happy Birthday Angie. Go fix those kidneys and liver Ali's cells! Blessings of strength to you all. Thanks for being there Nana. Ali have fun at Como, what a great place to visit.

  3. Your Bella is SO BEAUTIFUL!! Thank you for posting those great pics tonight. It must be so nice to get a glimpse of her gorgeous face without all those bandages every once and a while. Thank you for the wonderful update. I'm so glad she's taking a turn for the better. That makes me smile from ear to ear. What a proud daddy you must be of your little fighter. I pray that she continues to improve and that her cells keep on growing and making her stronger every day.

    Here's a small prayer for you:
    Dear Heavenly Father, please bless sweet Bella. Please watch over her and comfort her and give her body the strength it needs to fight against this disease and win. Please bless that her kidneys and liver begin to improve and her cells continue to grow. Please bless her family and comfort them and give them strength. We ask for these things in the name of Jesus Christ, Amen.

    With Love,

    Amber McLaughlin, CA

  4. WOW!!!! What wonderful news-I really tried to focus my prayers on NO VOD! So my next game plan is to focus my prayers for healthy liver and kidney. Again WOW...I feel so joyful and speachless. Thank you Lord for this gift, we praise you Lord for Your will and strength, for the faith that you give us, the small glispes of you Lord, I thank you. We ask that you continue with Your work, Your plan for Bella and Daylon. That these two brave fighters and their brave families find peace and comfort for all their many sacrifes. Lord, we ask that you continue to bless these wonderful people, hold those two beautiful babies and give them strength to battle this diesase and WIN!!! GOD IS GOOD!!! I THANK YOU! Amen.

    Happy Birthday Ang! What a wonderful birthday gift, Bella's counts are so encouraging, so exciting...BEAUTIFUL! Enjoy your day and celebrate. May peace be with you and yours.

    Tustin, CA

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  6. I have a story to share with you about my daughter and her reaction to learning about Bella... here is what I wrote on my blog today.

    "I have a friend/colleague who has a daughter, Bella, with Epidermylosis Bullosa or EB for short. It is a genetic disorder in which the gene responsible for producing the anchor keeping her skin attached to her body is faulty. This causes blisters and wounds all over her body. As a way to experimentally treat this incurable disorder she is going through a bone marrow transplant. Every day her Dad posts something new on her blog to keep family and friends up to date on how she is progressing, I am a Bella Blog junky. I am a faithful follower of her progress and I send positive energy her way every time I think of her, which is often.

    My part time job is at a hospital here in Phoenix where I work with adult patients undergoing transplants, so as I hear about how Bella's numbers are changing I have a general idea of how she is doing.

    Days ago I was reading Bella's blog, remember the junky mentioned earlier, during the day when I got home from picking up Mikaela from school. Miks saw that I was looking and reading something intently on the screen. She of course wanted to see and when she looked she saw a pair of socks. Bella gets a new pair of socks put on when they do dressing changes for her wounds and her Dad takes a picture and posts them as the "socks of the day". Luckily, I was on one of the photos of Bella's socks and not some of the other photos that show Bella intubated and sedated. I did't want her to be scared.

    My curious 5 year old started asking questions in her 5 year old way. "Whose socks are those?" "Why is she laying down?" "Who is the other girl in the photos?" So, rather than lie and try to divert her attention I decided a biology lesson was in order. I began by explaining that our bodies are made up of cells and that parts of those cells are responsible for growing skin, nails, hair, bones, and keeping everything in place. For this little girl Bella the part of her cell that keeps her skin safe doesn't work quite right so she is in the hospital to see if they can teach her skin how to stick to her body. Her Dad likes to post pictures of her socks so we can see and read about how she is doing.

    After a few minutes she looks at me and asks about the other girl in the pictures, Bella's sister, Ali. I told her that they were using some of Ali's cells to help Bella. Mikaela thought that the pictures of Ali having fun were a crack up.

    It was a bit later and Mikaela hadn't moved off of thinking about what she saw and what I had said. I waited knowing there were more questions in her head and that I would answer them when they came out. I figured they would be about the medical part of what Bella is experiencing, about Bella's skin or if she was going to be OK. However, I was not quite prepared for the question she eventually asked. It went something like this, "Mom, are Bella's cells taking lessons from Ali's cells?" Mikaela has been taking swimming lessons and we are talking about piano lessons. She understands that to learn something you take lessons from a teacher, coach or expert.

    I blinked and thought for a moment and told her, "Yes sort of, they traded out some Bella's cells for Ali's which will grow new healthy cells." To which she replied, "Well then Bella will be OK because Ali's cells know how to grow and I think they are good teachers." I agreed.

    So, now we both look to see if Bella has new socks on and we focus on cells learning their lesson.

    To follow Bella and her journey you can view her blog at"

  7. Wow!! Bella is a cell growing machine!! Go Bella go! Nothing like opeing a few thousand WBCs for your birthday! Ahhh sweet progress! So happy to hear some news showing she is headed to recovery. :) happy birthday ang!

  8. So so happy with this update. You must be so thrilled. Will continue the prayers for your beautiful Bella.
    I am so glad that she is seriously kicking some EB butt. So grateful for you pioneer families. We will continue to support you anyway we can, with prayers and good wishes. Take care and have a wonderful day. Love Leah's Nana

  9. What wonderful, wonderful news! Go Bella! Happy Birthday Ang! Here's to a blessed day for you all. Prayers to keep those good counts rising...prayers for no VOD, prayers for peace and continued strength for all of you. And especially prayers for Bella...beautiful baby girl, be well.

  10. Woot woot on the bilirubin! I LOVE the Como Zoo! We were there the other day. There is an amazing butterfly garden and I couldn't help but think of Bella and all the other EB kids that are in my prayers. Happy Birthday Ang!

  11. Sending love and kisses to Bella today. Happy Birthday my dear daughter. I love you.


  12. Praying like crazy for your amazing girl!