Monday, August 23, 2010

August 23: Day +52


Who is that? It's Bella!

Up days and down days...

... today was not exactly up. Sorry. Bella rarely seems to give us two in a row of anything, and if that is the case, tomorrow should be great! [tired smile, followed by a sigh]

Bella was a little restless last night and needed a few bumps of sedation throughout the night. That was a bad omen for the day, because usually she sleeps pretty peacefully through the night. If she was up, it meant she'd most likely be pooped today, and boy was THAT the truth. She tanked today in just about every way possible.

Her blood pressure was through the floor at several stages today, this evening, and tonight. And when I say, "through the floor," I mean like 60 over 21. At first, I thought that since we've D/C'd norepi and weaned back on hydrocortisone, we'd have to play around with the vasopressin before we found a happy medium. The problem is that we were dealing with low blood pressures before we went on esmolol. Now, her blood pressure has an antagonist on the inside (probably CIRCI - Critical Illness Related Corticosteroid Insufficiency), as well as one on the outside (esmolol).

So, first, we cranked up the vasopressin to try to even things out. Nope. We rolled Prisma back to net zero to help. Nope. We gave her a saline bolus to increase her total fluid volume. No dice. Finally, after ordering an EKG, they infused blood, and ONLY THEN did her blood pressure respond at all. Hopefully, it will stay up through the night.


Daddy changing out head dressings with respiratory therapy...


We are still taking it one day at a time around here. There really is no "plan" past trying to get her back to a fluid-even weight and keep her stable. On top of everything else, her blood gases went really acidotic (acidic to you or me) today so we had to crack the vent back up a ways as well.

Again, I think the heart of the matter right now is that we have 2 main issues one of which is causing a third:

1) CIRCI (adrenal insufficiency). Evidenced by low blood pressure despite IV fluid and vasopressors. Main treatment? Hydrocortisone.
2) LV Hypertrophy (thickening of the heart wall in the left ventricle). Causes poor blood pressure due to inability to fully pump blood into the circulatory system. One main cause? Hydrocortisone.
3) Acidosis of blood pH. Unclear as to origin. Haven't gotten any good answers, but also I haven't asked the right questions... I'm usually asking about BP and drug/fluid interaction.

Oh yeah... and then there's...
4) Renal Failure


Bella checking daddy out during bath time...

So, ups and downs. I feel afloat drifting in 40 foot waves in a giant storm with nothing but a life preserver on. My life preserver is my faith. It is rain-soaked, waterlogged, fraying at the edges, and just plain worn down. It's the only thing that keeps me from sinking permanently into despair. There are days when I am happy, days when I am angry, and days when I am fearful. Today, I am fearful. Dr. Verneris, many many weeks ago, cautioned that one thing you don't want is to be parked in the ICU. Well, it's happened. We're parked with no view of 5D in sight. I have faith that the view will change. I can't even feel it right now. Right now, the fear's grip is just too tight. Nevertheless, it's all I've got to get up tomorrow and do it all over again. I'm holding on to my life preserver as I fall asleep tonight.

Dear God, you can read the homing beacon in my life jacket, but don't come and get me. Get Bella instead. Heal her kidneys. Heal her heart. Heal her adrenal glands. You have already healed her liver. You have already healed her skin. You have given us so many tools to work with. Thank you for all of this, and for the practitioners who wield them for Bella's aid. Please, God. We grow weary, and need to lean on you now more than ever. Please "solve the case," so that victory may be proclaimed and your power and love may be witnessed by those following Bella all over the world.

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."

Good night.


19 comments:

  1. Beautiful prayer. Beautiful pictures of you and your girl.
    But those wise eyes amaze me.
    Sweet little girl, we love you.
    Prayers for calming waters after your stormy day.

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  2. God hears the prayers of your heart and soul...I echo them as well. God remains your beacon of hope. We pray you find rest this night, and God refills you up. Our hearts are with you...God is our everpresent help in time of need, and He loves you all. Your humanness and openness is a gift, and indeed you remain Bella's voice. May you feel God's power and hand over you and everything.

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  3. Prayers are endless for Bella here @ The Baca resident...we are praying for you Bella Doll! Good night and sweet dreams,
    nicole

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  4. Jack and Molly's NanaAugust 23, 2010 at 10:39 PM

    The photo of you and Bella is priceless. I think she's expressing the "I'm still here, Daddy, and giving it my all; hang in here with me just awhile longer" message. I KNOW that you're feeling overwhelmed tonight, but I also know that your faith WILL carry you through this.

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  5. I have said this many times before, but want to say it again hoping it gives you the strength to carry on: I am praying for Bella every day. God bless and keep you!

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  6. I'm glad to see Bella so alert in the pictures. There's no doubting she knows her daddy. :) I know the overwhelmed feeling BMT can bring, but don't ever forget that no one knows the joys tomorrow might bring. We signed a release not even a month ago for the doctors to do an autopsy on Daylon's brain and here he sits in 5D accomplishing things they never thought possible. What I'm trying to say is anything is possible. Like you told me, "It's not up to them (doctors), it's up to (Bella) and God." We love you. Jennifer

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  7. Im praying for your precious Bella every night. Is her skin healed? It sounds like from your post ! God is allmighty although i dont know why he would give her the condition in the first place, but hopefully it was just a mistake on his side and hes going to fix it now

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  8. My prayers continue for your baby girl. And for you her wonderful parents. God will give you the strength you need to follow Bella through this miracle...tomorrow will hopefully be a brighter day..Janet Simon CT

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  9. AMEN to your beautiful and heartfelt prayer.

    Susan
    A friend in NC

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  10. Praying for your family. Blessings from WA.

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  11. Extra prayers for beautiful Bella. Please hang on there, on your frayed life preserver. God is in control, let God comfort you and ease your fearfulness.
    Love the prayer. So heartfelt, so calming.
    Your last line always makes me smile. Yeah, I was born with this rare skin condition but when they brought me home from the hospital it went away. God Bless. Love Leah's Nana

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  12. Our Prayers continue for Bella and you her wonderful parents. What a beautiful prayer and the love and faith you express. It made me cry, it was so beautiful. God is in control and he will give you comfort and ease your fears. He is always with you during the good and bad times, he never falters, he is always by your side. Hang in there we are praying, praying and more praying for a miracle for little Bella. Keepthe Faith and endure. We Love You. Myrna & Dwight CA

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  13. I don't usually comment but I pray for sweet Bella (And your precious family) every night. As I follow Bella through her daddies eyes I pray for healing, strength, peace and comfort.

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  14. Our Prayers continue for Bella and you her wonderful parents. What a beautiful prayer and the love and faith you express. It made me cry, it was so beautiful. God is in control and he will give you comfort and ease your fears. He is always with you during the good and bad times, he never falters, he is always by your side. Hang in there we are praying, praying and more praying for a miracle for little Bella. Keepthe Faith and endure. We Love You. Myrna & Dwight CA

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  15. Praying with you all and sending all of our strength and love. Like I have said before, I cannot wait to witness Bella's testimony, it's going to be AWESOME. The miracles of our Lord are with us daily. Bella has made me open my eyes a little wider, so I can witness God's reminders of His power, presence and strength. Thank you sweet baby girl. Tim, your writing is beautiful, it made me cry. I repeated your prayer a few times through the night and of course again this morning. I'm not too good with words, but please know we are with you.
    xxoo,
    The Davidson's

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  16. I dont think I have said this...what a beautiful little girl.

    Many, many prayers for your beautiful Bella.

    Denise, WI

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  17. I have my bookmark set to day -2 for some reason, so every time I open up the page I see Bella's beautiful face. Today was no different and then when I clicked over to the most recent post there she was again. Puffy but beautiful.

    Bella I just feel it in my heart that you are going to pull through this. You are going to get to tell us all about this awful skin condition you once had but through the grace of God and your parents strength you fought it. And now it's gone. I just feel it in my heart. Every day I log on and pray for you sweet girl.

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  18. I echo your prayer. You are a wonderful Dad. Keep the faith. You all are in my prayers. I love this amazing family.

    Love,
    Grandma Carolyn

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  19. Beautiful, beautiful baby...it's so good to see your face Miss Bella! Hang in there Daddy Ringgold, we are sending you a BRAND NEW life preserver. It's strong, it's colorful, and it has butterflies all over it. Can you see it? It is big enough to hold your entire family, with a special place for Miss Bella. I pray that your fears are calmed. I pray that the doctors solve the rest of the puzzle very soon. I pray that Bella will rest, and regain her strength. Blessings to all, and especially Miss Bella, beautiful baby girl, who will be well!

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