Thursday, July 15, 2010

July 15: Day +13

Whew. L-O-N-G day.

I'll try not to tire you out with it as much as it tired me out.

It starts with me armed for the morning rounds to ask to start defibrotide on Bella immediately. Her bilirubin count was 1.1. This is up from .5 on Monday. The clinical trial the drug is administered under only allows for the drug to be administered if the bilirubin count is 2 or greater, so no dice. So I look blankly at the docs and say, "So I have to wait and watch my daughter get sicker before she can get better?" to which the HEAD of the ICU docs flips off, "Call your congressman."

No kidding.

Luckily it was EARLY for me and I was not yet at full steam otherwise it was gonna be ugly.

Can YOU think of a more cynical, flippant, INSENSITIVE comment that you could have said at that moment in front of 20 other health professionals? She's no longer on my team. I will tolerate her till her rotation is up because she is the attending physician in the ICU, but oh man, there are things I really want to write right now...

That all went down within the first 15 minutes of arriving at the hospital. Next up? Surgery. The doc who did Bella's first two lines is on vacation so his associate will be operating on Bella. He is VERY uncomfortable with putting in the G/J tube because he doesn't want to injure Bella's skin in the process. Hey, that is cool, but I was surprised; I thought surgeons had test pilot bravado... not this guy. So, for the next hour, it sounds like it's off the books. No big deal, other BMT kids are not eating at day +13; they are still on TPN, so no worries.

Somehow, just before he comes in to see Bella for pre-op, the BMT docs corner him and ask him to reconsider the G/ tube. So, he ends up in our room at the same time anesthesia, the BMT docs, and nursing are there. I give him a pep talk about how strong her abdomen skin is and that it is already covered to help protect the site from injury, so he offers, "If it's easy we'll do it, if it's hard, we won't." Fair enough.

In the mean time, the Nephrology resident comes in to talk about Bella' kidneys and what is going on with them. Wait a minute, weren't we focusing on the liver just a couple of hours ago? He explains that if things don't get better, we might have to go on dialysis to help filter some of the unending fluid buildup occurring in Bella's body. So, the Hickman they put in needs to be a bigger size to potentially accommodate dialysis pressure. Okay, fine.

We head to surgery and I am allowed into the O.R. at the end of the procedure to install a special dressing to help keep the wound site clean. The view when I walked in was so bad. They were so afraid to hurt her skin, they didn't clean ANYTHING off her. This is good on the one hand, but what I had to clean up... it was graphic and rough. It looked like a crime scene. I'll spare the details, but suffice to say I spent a chunk of my time in the O.R. cleaning up all the blood and betadine that she was bathed in. I just couldn't let them bring her back to her room looking that way, especially with Ang and my mom waiting for us.

So, we spent the rest of the afternoon cleaning and changing Bella's bandages. Luckily, Ang took the afternoon off so we could work together, otherwise I STILL might be cleaning. Bella's skin is hanging in there. It could be a lot worse from a skin perspective.

Her counts?

WBC = 2,200
ANC = 1,400

Good growth each day now! If we can just get Bella's liver to behave... PLEASE pray for NO VOD. This is a big one. Them chemo has really hurt Bella's kidneys and liver, and we need a miracle... and I need some sleep. More tomorrow.


  1. Will be concentrating prayers for NO VOD! Rest sweet baby Bella, we are all there with you little princess, wrapping you in prayer. For God's plan is the right plan, we trust in Your will heavenly Father. Thank you for sharing your love of your family with all of us. Thanks for reminding me to open my eyes to God's blessing and His will. Thanks for putting me back to speaking with God daily again. You, Ang, Ali and Bella have done this for me and I cannot thank you enough. Praying and thinking of you all-including the Edling's and their sweet son Daylon.

  2. Such a long, hard day... Always thinking of Bella (and Daylon) and wraping them in my prayers. God is good! He will not permit VOD. Stay confident! The numbers are great!!

    Very best wishes,
    Carla and Matilde

  3. Whew I bet you're glad the day is done. Hang in there Tim, it will get better. We will be praying for beautiful Bella and your whole family. Glad that your Mom is there to help out and give moral support and most of all lots of love. Love you guys. Love Leah's Nana

  4. WOW... how can they be so insensitive? Can you file a complaint? That comment was not only insensitive but also rude and uncalled for! I wish these people would put themselves in your place and imagine how hard it is to see your daughter laying there in so much pain. Our prayers are with you entire family, especially with sweet Bella.

  5. You don't know me, I found your blog through another blog. My heart hurts for you and your family. I actually live in St. Peter, MN which is an hour South of where you are.

    I was just in Minneapolis a couple days ago as my husband had foot surgery and had to stay the night in the hospital. I thought about your daily life at the hospital and tried to imagine how that would feel.

    I was curious, what kind of job does your wife have? She is able to work remotely right? Well anyway, I am praying for you and am anticipating God to do something great for your family!!!

  6. Hi Tim. I've been following your family's story and I have never commented; but today, something is stirring. I hope I'm not stepping on toes (but as a mother and an advocate for my children) I am wondering why it matters what the clinical trial says...aside from the flippant remark (which was rude...perhaps a class in manners is appropriate?)...if the drug is approved in Europe, can't you still give it to Bella and not be part of the clinical trial? The drug is not FDA approved regardless, and usually (not always) clinical trials are not approved for children (they usually wait for the drug to be approved for adults before they start trials on children), so what difference does it make?

    I'm not trying in anyway to be rude, just trying to give you ammunition in your fight (or conflict) with the doctors and this drug.

    You guys are a fantastic advocate for Bella and a wonderful family, it just hurts my heart that you and your family are suffering.

    I hope today goes better and Bella's bilirubin count goes down (another thought -- is it possible to use the bili lights that they use on newborns to help break down the cells?) -- that the medication isn't even necessary. I'll hold you close in my heart today and all days as you travel this uncharted course (and Daylon's family, too!). And one day Bella will say "Yeah, when I came home from the hospital I had this problem with my skin, but my family and I fought it and it went away"

    Virtual hugs from Jill in IL.

  7. Praying for Bella!
    God bless,

  8. Tim, Bella, and family...I am praying, you continue to fight. You have come to far for this kind of comment. sg-KS

  9. I have been following Daylon and his families story for a few months now and thru there blog I found yours. My heart breaks to read the story of your precious Bella. I'm literally in tears. I don't know how you guys do it. You are awesome parents and I will keep Bella and your whole family in my prayers. I will also pray for the staff there since it seems they need it as well. Stay strong.

    Amber McLaughlin, CA

  10. WBC almost doubled in a day! WHOO HOO!!

    I know it was a hard day! But also know(from reading this blog) that you are a positive person! So I am pointing out the positive! :)

    Praying for Bella and Daylon!

  11. I think all of your extended "Blog Family" will join me in a collective, comforting hug...praying for no VOD, praying for more sensitivity from the staff, praying for you all, and for Bella...beautiful baby girl, be well.

  12. Lynne, Bob, Jack and BenJuly 16, 2010 at 9:30 AM

    I called my mom yesterday to ask her church group to add Bella to their prayers. As we were talking about sending healing energy, intentions that the VOD goes away and strength for you guys, a butterfly appeared and circled me several times. Hmmmmm.....

    We are holding faith for you, believing in miracles and sending love in the hope that it holds you up. We love you.

  13. Praying for your little one and all of you.

  14. The butterfly you have in your picture is the type of butterfly that has been "harassing" me all spring. I smiled when I saw your picture. Typically we dont have butterflies around our yard but for some reason there they are this year. They swoop at me, dance around me, swirl in the air in pairs. Not sure why I am telling you this...I guess I am taking as a sign. A good sign.

    Hang in there sweet Bella! You too dad (everyone else there too). I am so glad your mom is there. Nowing how hard it is to be in the hospital and how nice it is to have extra hands and support.

    Praying hard
    Denise (WI)

  15. Praying for sweet Bella & your family...

  16. I can't believe that she said that to you!! What is with some these attitudes around here? I love the picture of the butterfly. Where was it? Last night when I was heading back up to the hospital a butterfly landed on my shoulder and then flew away with another butterfly. It was like a dance how they flew back and forth. It reminded me of our kiddos. Very cute. I hope Bella is doing better today! Praying for you always, Jennifer

  17. Bless you for not grabbing that doctor by the throat! I would have lost it. God will honor your ability to hold your tongue, hopefully in the form of healing. Sending prayers your way!

  18. This is the first time I've stopped at you here by way of one of Beki's Fingerprint Friday posters. I will keep you, Bella, and your family in my prayers. I have to go back and read more. Blessings~

  19. Tim
    All our thoughts and prayers from Connecticut to Bella and you and your family.

  20. I made Bella my fingerprint friday again...
    lots of prayers will be coming!

    and hopefully, some notes from "home" soon will be in your mailbox!