Thursday, September 30, 2010

September 30: Day +90


Daddy reading your letters from his phone (Droid X)...

Heaveno!

It was mostly a quiet day for Bella.

In rounds, Dr. Somani wanted to set an aggressive goal of taking off 200 mL of fluid by midnight. This was a reversal from him wanting to take it super slow, and Sam encouraging all to go super slow. He wanted to see if the avastin really did the trick. We were running her -5 an hour (the Prisma dialysis machine was set to pull out of Bella's blood 5 mLs per hour more than we infuse in through IV meds and nutrition) since midnight, but he wanted to ramp it up since her blood pressure was still 100s over 70s.

By noon, we were off vasopressin altogether!

However, by 3pm, it was just like old times. Take off too much too soon, and by the afternoon/evening, kerplunk.... Bella's blood pressure tanked again. First, it was just when she was sleeping hard, but then later in the afternoon, mean pressures were in the 40s even while we were changing her trach.

By 8 pm, we needed to turn the vasopressin back on and we ran her even on the circuit for the rest of the day. By the end of the day, we will still be -100 at least, and on the same pressers as overnight. The question will be if Bella's BP will rebound back up, or did we do something to mess it up (again). I suspect we might even need to run her +10 per hour over night to give her back a little volume and go up a little more on the vasopressin to give her some head room.

The reality is that Bella's vasculature recruits fluid back into it from her tissues at HER rate, not ours, and we need to find the sweet spot... her rate, and stay there. I completely understand testing her to see what she was capable of. How will we know unless we try?

I kind of felt like a heal as I was reading all your congratulatory letters to Bella, because by the time I read them to her this afternoon, her blood pressure had dropped in HALF, and I was hoping to inspire her to rebound. She is really beat from her withdrawals; she slept all day, and barely moved. I made sure today they didn't withhold her sedation even though she was sleepy. We get into this vicious circle with sedation. She is too sleepy, so we hold scheduled meds, then she gets way too agitated, so we hit her with PRNs (meds-on-demand), and by the time they work, its hours later and she's SNOWED by the stacked drugs and exhausted from the shakes, then it starts alllll over again. This just happened again yesterday. Too many PRNs after going back on the circuit and BAM, knocked out today.

However, having said all of the above, we are still WAAAAY down off pressers, steroids, and might drop under 15 kilos tomorrow morning for the fist time in 10 days. Now, we need to just run her even and let her insensible losses (the amount of fluid she naturally burns off) do the fluid loss.

We are not out of the woods, but at least there is a lot more sun shining through the branches!

:)



Bella's Guestbook, where staff have been writing the most beautiful notes to Bella about what they have learned since meeting her...

While I'm sad that Bella's blood pressure tanked yet again, I am more hopeful than before that she is improving, and most importantly, we have the full support of the docs to fight for her again. Dr. Doom is ON BOARD with Bella, and we are ON BOARD with Dr. Doom! Turns out he works with my good friend Logan, who had a lot of really nice things to say about him. I wrote him last night to apologize for writing him off on day one, and for making him the antagonist of the story. Hey, every good story needs an antagonist, and I thanked him, because he mobilized YOUR support like never before, and so without him, things may not have turned around, and we certainly wouldn't have had the avastin on board.


Mina and I in action cleaning and changing Bella's trach...

We got Bella's custom extendo-trach today and put it in with the help of our stellar ENT resident, Mina Le. She rotates to Hennepin County Hospital tomorrow, and we are going to MISS HER! The new trach definitely lets Bella actually move her head! When we sat her up to change her ulcer bandage, her head was bobbly compared to yesterday when it was locked in place by the bigger trach and velcro holder.


Look, even more cheeks to kiss! Behold, the extendo-trach is low profile till it squeezes out from between Bella's many chins...

The first two butterflies arrived in the mail today from Colorado! The walls are filling up. Thank you, and KEEP 'EM COMING!


One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

God night.


Stuffy Gloom, M.D. hangin' with Bella. That's the name Ali gave him...


Here is Stuffy doing I don't know what with Ali's newest bear from Child Family Life that has a custom trach fitted onto him! He will hang out with the dog that has a central line placed in him. What a motley crue...


Ali and mommy were treated to a bald eagle, a hawk, an owl, and a falcon at RMH after dinner!

31 comments:

  1. Again with the refresh button! Even as I am clicking I say to myself " its too early for a post...." but I still click away!
    Love the pictures on This post...Bella, hang in there, baby. You are the strongest person I know!
    Can't wait to email your daddy the team Bella shirts, which EVERYONE wants! Love your scrapbook....hope I can read it with you when you get home. And if you need more pages, daddy just needs to ask! God night from home.

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  2. So glad that Bella and Ali are enjoying stuffy Gloom! (it was totally meant to be Dr. Doom, but that's what happens when you do stuff right when you get home after working a really busy 12 hour night shift!!!)

    Seeing all of your pictures tonight with Dr. Gloom / Doom was just what I needed. I just found out that a baby that I took care of in the NICU last year passed away. I have no idea what happened, as his family has moved out of state, and I only found out through an email his parents sent out with the funeral / service information. However it happened, there's one more angel up there watching over Bella - that I am sure of.

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  3. Sweet Bella! I figured I would check before bed to hopefully see your update. I am happy to get my "dose of Bella" right before bedtime. I am so glad the docs are fighting for you again. I will never give up hope on you. xoxoxo

    Tim- I forgot to mention in my earlier comment how thrilled I was to see Bella in your arms. :)

    Denise WI

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  4. Good evening, Ringgolds,

    I didn't post yesterday as I thought I'd exercise a little patience (something else I've learned from you guys) and wait to see how things moved along for Bella. She's so beautiful, and I just have a feeling, as you say, that everybody just needs to work out her rhythm (along with the input of the experts and the daily, extraordinary and amazing presence of you and Ang and Ali).

    It was almost like high summer here in Canada today and I battled with sharp brambly weeds in my overgrown yard, and I listened to a little music on the radio and I turned the radio off when the bald eagles came overhead and did their odd cackling thing. And then I had a hummingbird visiting at the feeder. And the sea looked spectacular, sparkling and clean and bright and open (I am lucky to have a spectacular view to enjoy every day). I thought of you all. And it all felt very good.

    I know all of us out in cyberspace can't hear one another, but we are all very much present, in the moment, with you and with beautiful Bella, night and day.

    Sleep tight,

    Jane (from the garden, not the rooftops, this time)

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  5. Just checking in to see how our girl is doing. The new pictures of that sweet face are wonderful. I'm still praying for you pretty girl!
    You can do it Bella!!!!
    Lots of love,
    Mandy

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  6. Tim,

    The thing I forgot to mention while I was blabbing on about the wonders of nature in my garden was that we all got to see and hear bald eagles today! How peculiar. Aren't they magnificent? Though oddly sqwawky when they call to one another.

    They restore my soul. And they fly high. Rather like Bella,

    Jane

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  7. Jack and Molly's NanaSeptember 30, 2010 at 9:10 PM

    The new trach looks great, and reminds me of a student whose trach I suctioned twice each day. Gosh, he must be 20 years old by now. Wow.
    I'm so pleased that you've made a connection with Dr. Doom and Gloom; don't things seem to go much better when there's respect all around? I'm sure that you will find the magic number with her meds; you're so good at practicing patience that it's bound to happen.
    And I haven't mentioned it earlier, but Bella's skin looks GREAT; so pink and healthy!
    Can't wait to check in tomorrow; have a great day. And, GO, Bella!

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  8. heaveno!

    tim, you are one of the strongest people i have ever "met"....bella is so blessed to have you :)

    i too knew it was too early but just couldn't resist hitting the refresh button! not only did i get to read the new post before falling asleep, but i got to see the beautiful pictures of sweet bella as well!

    dr. gloom/doom should be honored to have played a part in rallying the troops around bella! thank god for him...just think what bella has done for him!

    one of the many things i've learned is a sweet little girl with a horrible skin condition can move people around the world to pray! also, i've learned that a sweet little girl can be a tenacious fighter when she is surrounded by a family that totally loves her and would do anything for her!

    keep moving and one day bella will be able to teach others with eb that " Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

    god bless y'all
    susan
    w-s, nc

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  9. Those bears are really touching ...

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  10. Oh Bella...keeping us all on our toes. Tell those docs to take it nice and slow with you next time!

    Tim...I'm curious if the avastin is a one time drug that "resets" her. Or if it's a maintenance drug? And how that works going forward if she has more drops in her BP? I know it's uncharted water so maybe you don't have an answer.

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  11. T, A, A, & B,
    We love and miss you.
    S, D, W, & M

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  12. I think Bella looks more rosy. Is it me or is she looking better?

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  13. Dear Bella-

    It sounds like you had an up and down day, but God is in control and He is taking care of you! You look good and (to me anyway)a little less fluid-filled? Praying that you continue to improve at whatever pace is best and that your mom, dad and sweet sister will have rest and encouragement.

    Love from TX!
    Laura

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  14. Just thinking great things about and for the Ringgolds......
    Namaste.

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  15. Glad to hear that things are going well, with the exception of the mishap this evening. I've been meaning to tell you that Dr. Lund can really open up if you can get pal-zy with him. That's what worked for us, anyway. Oh, and a lady you go to church with works with a lady we go to church with at the city of Orange office. Anyway,Daylon came up in conversation, which lead to Bella and they both got a kick out of knowing the one baby through the other baby's blog. Hope that made since...point is: small world, huh!? :)

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  16. Oh Bella...You definitely keep us on our toes!! I'm so sorry your blood pressure is tanking again. But as you have proven to us MANY times, you will get thru this and once again inspire us!! Stay Strong little Bella.

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(9 mos.)
    The McLaughlin Family
    Moreno Valley, CA

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  17. Kepp on fighting Bella. I'm still praying!

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  18. Morning Beautiful Bella: Doing what I do first thing every morning, checking in to see how you are doing. So sorry that your bp is still acting crazy.
    You are an amazing little girl and we are all praying for you to get better.
    I can't wait until I get a chance to meet you and give you a great big hug and kiss. Hang in there baby girl, you can do it. Love you sweetie!! Love and Peace. Love Leah's Nana

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  19. Hey Bella
    How does that new trach feel? I hope a little more comfortable. You are doing a great job, just take as much time as you need to because there is no race to the future. We have this moment, and this moment sure is precious, just like you. You have the strength of so many people behind you, praying, wishing, good intended people, remember that and hold on to it so you can use it like a super power when you need to. You look so beautiful today, your skin looks amazing and you are so bright and rosy. So glad to see that. So bella, you just recover at your own pace, your support system is not going anywhere. I love you sweet bella!!!

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  20. Sweet Anabella,

    The first thing I thought of when I saw the pictures your Daddy posted was that you look MUCH less puffy! I hope you are able to get the rest that you need, all this is very hard for your little body! I will pray today that God gives you strength and MORE determination so you can keep up the fight! I will stop in to say hello next week, if its okay with your Mommy and Daddy! We love you Bella! Praying for you always!!!

    Amanda, Bryce and Corynn Schauer

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  21. I'm so glad Dr Doom is on board with you and the rest of us who believe in Bella's recovery! I love that you are reading her folks' letters and I love to see the walls in her rooms filling up with prayers and well wishes - that can ONLY help, right? To be surrounded by all of that love! The photo of you holding her is so sweet. Come on Bella, you can do this!

    Best,
    Cara in Tucson

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  22. Isaiah 40:31

    "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they sahll walk and not faint"

    What a magnificent picture of a magnificent bird! And a wonderful reminder that we are promised the strength to SOAR, even amid our struggles and trials. Before a storm an eagle will rise above the clouds. May you all know this strength in a very special way.

    Praying for healing (and wings with which to soar),

    Susan
    A friend in NC

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  23. ooops...I didn't proofread very well.

    *shall* walk

    Susan in NC
    :-)

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  24. Sorry there was another bump in the road....we are still praying for your sweet family!

    Hugs

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  25. My son Martin (12) has put Bella's blog on his favorites and he checks the blog before going to school, even before me! Bella reminded my children how important is to pray for others.
    I'm glad the doctors are also part of Team Bella.
    Beautiful pictures.Lots of love,
    Mariana,UK

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  26. Sweet Bella,
    Just keep fighting Bella. Just keep healing, step by step.

    We pray for you every day here in NJ, My daughters Becca (13) and Liv (12) ask about you everyday. They say "How's the baby today?" Just like you were part of our family! Like your dad said the other day YOU sweet Bella and God have made us all one big family! That's so awesome!

    Prayers and more prayers.
    Tina, Mike, Becca & Liv in NJ

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  27. Loving you Bella. Still hoping and praying for you every day. Sending you some long distance butterfly kisses ;)
    Laura Valetutto
    Bergisch Gladbach, Germany

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  28. Dear Bella and family,
    I love the guest book and the question, "What have you learned from Bella?" Between that and asking us why we come here to your blog, you ask the best question to get people writing and pouring out their hearts. Thank you for your continued openness and honesty because it inspires us to do the same. I've learned that you can never, EVER give up hope from Bella. I've learned that in a world that often feels hurried and rushed and full of rude people, that actually, there are several wonderful, compassionate human beings out there. We can come together in times of crisis and support each other with our humanity. And then there are the small things that have changed since knowing Bella, even only via your blog. She reminds me to be grateful for every breath of air, every bite of food, my health, my healthy husband and parents, I have so much to be grateful for, and Bella reminds me to stop and appreciate all I have every single day. But I also find myself more patient and kind when I'm out in public because now I know, there are other caring people out there, too. Thank you for bring us all together here in support of a beautiful, miracle child. Lots of love,
    Emily

    Emily
    Ft Lauderdale, FL

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  29. Bella and family,

    This is my first time posting, however I have been following your story for some time. I check for updates every morning before work.

    I am amazed at your families strength and am praying daily for you.

    You are teaching me to be grateful for all the blessing in my life.

    Keep fighting!

    Sarah (ON, Canada)

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  30. Good night Bella. I'm so tired and think I'll wait till tomorrow to get your update. Sometimes it's nice to have that to look forward too. I hope you had a good day!

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  31. Beautiful Miss Bella is looking better every day! But slow and steady wins the race...Little Miss apparently doesn't like to be rushed!

    PS - Don't feel like a heel Tim...we say thank you and congratulations all the time for things that have not quite come to pass...but we believe that they will happen, so we are already thankful...remember that scene from Pretty Woman, when Julia Roberts thanks Richard Gere for a wonderful time, before they actually have it, in case she forgets to thank him later? I am thankful too, because Bella, beautiful baby girl, has already been healed! Go Team Bella!! Blessings to all.

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