Friday, August 27, 2010

August 27: Day +56

Hello, Happy Friday (or Saturday) to you all!

Well, we had a breakthrough today! YESSSSSSSSSS!!!!!!!!!!!!

Remember how we couldn't figure out how to get Bella's blood pressure from bottoming out? Remember how we started her on vasopressin along with the esmolol on Sunday, and her pressure has been in the toilet ever since?

You're gonna love this.

I found out in rounds this morning that the team learned yesterday evening that...

... Prisma dializes vasopressin.

Seriously. After being on the drug since Sunday, and on Prisma (continuous dialysis) the whole time, the team just found out last night about the drug interaction with dialysis...

So, we started going UP UP UP on vasopressin today. I told the team for the second straight day NOT to look at the dose, but look at the patient. Since the dialysis was dialyzing the drug off, WHO KNEW how much was actually being metabolized?

At one point, Sam the attending ICU doc, who I really like a lot, mentioned as he was walking out the door that he had half a mind to get rid of the vasopressin and go back to norepinephrine. That got Chris, Bella's nurse, and me to brainstorming. We began to think about what the days on vasopressin had been like. Sunday... okay... for half the day. Monday... bad. Tuesday... bad. Wednesday... bad. Thursday... pretty good... hmmm... what was different about Thursday? Why were her pressures so strong?

We were off Prisma till late in the afternoon! The vasopressin wasn't getting dialyzed so it could actually do its job! That was it: Vaso gets dialized, norepi doesn't. We needed to go back onto norepi and get rid of vaso. The only reason we ever switched was due to esmolol, and we were off that, so why were we on vaso if it wasn't working?

I literally ran out of the room to get Sam. He came back in and we laid out our argument. He bought it. Let me rephrase... we laid out why HIS hunch was the best lead we had. It still didn't solve the cause, but might at least treat the symptom in the meantime. Well, how can anyone refute their own idea? ;) He agreed to go back to norepi. Within about an hour back on, Bella's blood pressure jumped up and they began to wean off the vasopressin. The goal through the night is to wean it off completely and return solely to norepi.

I can't tell you how happy I am tonight. We also went down on her narcotics, and went up on her methadone and scheduled her ketamine on a regular basis. So, we have a new sedation profile that we are transitioning into with excitement. We will move off versed and dilaudid, and remain on ketamine, methadone and precedex. When I left tonight, Bella's pressures looked GREAT, and she was clearly awake, but seemed more peaceful at the alert state she was in than in recent days.

Now, hopefully tomorrow we can begin to pull fluid off poor Bella since she is an absolute giant right now. I feel like we just chased a ghost of a heart murmur for 10 days now, and we are just now getting back to where we were. I am a little frustrated by the process, but this is the nature of the beast. It is like seasons. Just because you may want summer to come right after winter, you can't force it to. You need to go through spring whether you want to or not. Similarly, you can't move any faster than a slow crawl in the ICU, regardless of how impatient you (I) might be.

I will share a cute moment today... we were taking off Bella's headgear so we could roll her over and change the dressing on her ulcer. The RT had all the bandages off Bella's face, and was just holding the tube in her mouth for a minute while the nurse was administering a drug. Bella was awake with her eyes open, so I started to sing one of her songs to her. Well, while I was singing, Bella scrunched up her face like she was trying to smile. Her whole affect brightened! Poor thing is so swollen right now that she could hardly move but she smiled with her entire face! The RT noticed also and we had an, "AWWWW, SHE'S SMILING!" moment in the room. It was really tender and sweet. Bella has endured much, and will need to endure much more, but I will say that if you just give me a moment like that to me every now and then, I'll be up for being beside her the whole way!

Lastly, Ali has been practicing her letters and impressing us with her ability to write pretty much the entire alphabet now. What has been really interesting is that she doesn't consciously know what she is spelling when she starts drawing letters... BUT, recently, she wrote HLA and TPA in my notebook. These are very specific transplant acronyms that she no doubt has heard.
Today, however, takes the cake. What word does the below picture resemble?

You got it.... PRISMA. We joke about "Rosy the Prisma Machine," but no joke here! She doesn't know that she was almost spelling prisma; she never made a comment about it, and she has no interest in trying to spell words correctly yet. What's on ALL our minds 24/7 up here? Bella.

Last, thank you all who have posted these past 2 nights. We are so flattered and humbled by your outpouring of love and support. I again say that the reason tragedy and "bad things" happen in the world is for us to have the opportunity to KNOW ourselves as loving, nurturing, compassionate, helpful human beings. Those opportunities are there every day, but tough times seem to "turn up the volume" on the opportunities to help another human being. This truly appeals to the highest parts of our nature and we experience ourselves as connected to another, whether giving or receiving, and we experience ourselves as good, and we have an innate desire to KNOW that we are in fact good after all. Bella in turn has come to earth with EB to give us all the opportunity to care for her... to CARE FOR ANABELLA. It is in doing this that we get to know ourselves as good people by wishing good upon another, and for many of you, another that you have never even met. Simply extraordinary. We get to see by all these comments, that there is a lot of good in the world, despite what the major media outlets spew every day. Miracles abound in OUR community, in our world. This is our community, and we feed each other.

Thank you (the person sitting in your chair right now - yes, you!) for making this community so special. It is an honor to be in community with you.

Good night.


  1. Yay!!!!!!!!!!!!!!!!!!
    As a kindergarten teacher, I'm so impressed by that inventive spelling! Go Ali!
    So, Bella...what kind of cake do you want for your party?

  2. Loving you guys and thinking of you all the time, I am so happy that Bella's blood pressure was better today. Praying hard for you all and especially for Bella. Happy thoughts and lots of love. Laura V. Germany

  3. So excited to see this improvement. I read your blog daily and am completely touched by this story. I feel as if I have a personal stake in this outcome. All the best to you and your family!!

  4. Praying for your family daily.

  5. So glad to hear things are looking up. You're the best advocate parents Bella could have. I'll check in as soon as I get past the State Fair.


  6. Jack and Molly's NanaAugust 27, 2010 at 10:06 PM

    Hooray! Another day, another little miracle! I always admire your writing, but today's "lesson" about the seasons was spot on. When we were facing my husband's lymphoma, it seemed so over-whelming - until we decided that we'd handle it one day at a time. Patience is not easily learned, especially for those of us whose professional lives are filled with putting out little fires, as it were. But through those many months of treatments and tests, we DID learn that those "little miracles" take time, and it has been a valuable lesson. Luckily we've got LOTS of it, and so do you. And I know that you're up to the challenges ahead, especially with your support, both medical and personal. I'm proud to be on Team Bella!

  7. So pumped about the blood pressure for you guys!! I'm Tori by the way.... through blog "hopping" stumbled across your site, went back and caught up and been following ever since! Just never commented. I'm from Louisiana and an NICU nurse, so I LOVE my babies!! Praying for Bella!

  8. So glad to see and hear that things were way up today!! I love how involved and intuitive you are with her journey. Ali's spellings and drawings are AWESOME! Oh, the things she will teach little Bella!! God bless you all tonight and every night. We are always with you in prayer and thoughts!

  9. Ali is so beautiful and full of life!! :) I can see through her drawings and pictures just how much she loves her sister.
    I continue my prayers for the family. And the doctors as you seek wisdom and strength.

  10. Sooo touching...a smile worth more than a thousand words. Your daughters so clued in...the love and connection so apparent. What a blessing.

    Praying always...hugs

  11. Glad to hear that Bella had a good day today!

  12. I am so excited to hear that you guts figured out the problem with her blood pressure. Woo Hoo! What a weight to be lifted. I'm so happy that Bella is doing so much better. Our prayers are being answered. We are seeing the miracle of God. Lots of prayers in the way tonight as well. Stay strong.

    Take Care,
    Amber McLaughlin,CA

  13. Ok...I went from completely tearing up while reading when Bella falling out of my chair laughing, from Ali's picture! That was a GREAT moment I just had :) Wow..Tim & are amazing...again, so happy that you take notes daily on Bella's progress/numbers...I feel like you may have saved many more EB kids from experiencing the, 'what's not working here', when you came to the conclusion that vaso gets dialyzed (spelling?)- great JOB!!! I pray that you enjoy your weekend! I pray that the Lord continue to shed HIS light & wisdom upon you, like HE has been doing!
    Good Night Bella uuuuuu

  14. What a breakthrough! I am so glad you figured out the blood pressure issue! And now, with a strong blood pressure, the heart rate should drop.

    I just loved the "smiling moment". Thanks for sharing.

    Continue with that confidence. Continue with that strength! God is good.

    Carla, from Portugal

  15. Dear Bella,

    The world breathed a collective sigh of relief today! Praying for you is like carrying a shopping list around the store - crossing items off as you make your way! Know that I'm in the quiet of the back of the church for you, Sweetie! Just think, both your grandfathers can bring your needs face to face with our Lord. How they must be spending their Heaven these days!

    Aunt Mary

  16. So glad today is an up-day. I think about and pray for your family daily.
    -Long-time lurker just coming out to say hi...Meredith

  17. Tim you have missed your calling, at least one of them, as a doctor. But most of all your calling is to be Bella's daddy and advocate. Hope Angelique is feeling better. Hello to Ali. Love you guys, Terri R

  18. Yay Yay Yay Yay!!!!!!
    What a sweetie Bella is, that is so great that she gave you a smile! Those smiles are worth millions! Ali- OH my GOSH he is so cute...I want to squeeze her. When Bella is a little better hopefully we can meet at Dayna's new house for dinner or something.
    Here's to another GREAT DAY!!!!

  19. I'm smiling like the polka-dotted monkey in Bella's bed! So glad to hear some positive news. And for you to be able to see a smile on sweet Bella's face...well...priceless! Keep singing, Dad, keep singing!

    A friend in NC

  20. YAYYY!! I am so happy about the vasopressin breakthrough...that's just awesome news! Now we need to create the universal database that has all of the known drug information listed in it: interactions, side effects, contraindications...the works. So any doctor could just put in the relevant info about the patient, exactly what drugs they are on, and add things like dialysis...and it would spit out this info in a nanosecond. Praying for more positive news... Bella is on her way back! Blessings to all, especially Miss Bella, beautiful baby girl, who will be well! Hugs...

  21. WOOT Woot!!!!!!! Way to go blood pressure!!!! I think that you should get an honorary PHD and they should call you Dr. Ringgold. Very impressed with Ali's writing ability. As a teacher I can tell you that is some talent for a little girl her age!

  22. Thanks so much for sharing this journey with us. I found your blog through my friend Sara. We live in Hong Kong and have two young children as well. I'm inspired by your faith and can see God's hand of blessing upon you. God is Healer and God is Love. May you experience His touch today. Bless you!!

  23. YAY for brainstorming!
    Still lifting all of y'all up in prayer.
    I was so pleased to hear of her smile.
    A momma in TX.

  24. Wonderful news about Bella! God Bless.

  25. It is so great to hear good news about Bella...keep it up sweet girl!! God Bless!!

  26. What a great day!! We read your blog daily...pray, and think about you daily!! Just want you to know how much your insight, honesty, and above touches us. I also talk to your mom, Ang daily to get the latest update. GOD IS GOOD ALL THE TIME...thanks to you Tim for the word PROVIDENCE...OXOXO Adrienne and Lee

  27. How funny is the Prisma pic lol x x

  28. I had tears in my eyes when I read the part about Bella smiling. And loved that picture by Ali

  29. Hi Tim: So so glad that beautiful Bella smiled. After reading that I smiled too. What great news!!
    Sure hope Ang is feeling better and give that Ali girl a hug for me. What a great prisma picture. Do you see how they are connected now?? Pretty cool, huh?
    Hang in there guys, you are doing a wonderful job of figuring out all the little quirks with Bella's care. Love you guys. Love Leah's Nana

  30. Cindy E. (Greenville, SC)August 28, 2010 at 6:08 PM

    WooHoo! You figured it out!!
    So excited to read about this improvement today. I read your blog daily and keep praying for Bella (and all of you too!) EB is such a horrible disease, I know Bella will beat it! Such a pioneer! All the best to you and your family!!

  31. Happy to hear the positive news! I know there will be more and more positive news to come!

    Awesome Vibes coming your way!
    Tina & family in NJ