Friday, July 23, 2010

July 23: Day +21


mommy and daddy in Bella's room...

Another quiet day... mostly...

I arrived this morning at 8 am to the mixed blessing news that the dialysis machine had crashed at 11 pm. This was a mixed blessing because on the one hand, no fluid was being taken off Bella for 9 hours. On the other hand, it gave me the chance to change her line dressings while off the super finicky PrismaFLEX (don't know what the flex is for...). When I had to do her line changes while on the machine two days ago, I felt like McGuyver dismantling a nitroglycerine bomb or some such outlandish thing with some gum, toothpicks, duct tape, and a lighter. Every time I would so much as move Bella's arm, the machine would start alarming... DANGER DANGER - BOMB WILL EXPLODE IN 5 - 4 - 3 - 2 - 1 ...

So, I got my window to change dressings. Problem was that it was during rounds, and Murphy's Law dictates that the moment I had on gloves, a mask, and had exposed the line to the world, I'd hear the knock on the door signaling that the herd had arrived and off they'd go without me. Amazingly, for some reasons they couldn't say, rounds got held up for 2 hours today, so the knock never came. So, I got clean dressings on both her lines. Normally at 8 am, I am not fully alive, but given the anxiety "Rosie-the-Prisma-machine" gave me on Wed, I was ON FIRE this morning maximizing my "mess-with-Bella" window! Who needs coffee when the threat of a big expensive machine crashing due to you hangs over your head?

Prisma got up and running nicely, and Bella was all but off Dopamine in the process! She hovered between 5, 2.5, and 0 Dopamine throughout the day while on the machine, which means the 3-day (today is day 2) Hyrdocortisone therapy she is on is working well enough to maintain blood pressure while on Prisma. This is good for now, but it remains to be seen why her adrenal glands aren't working well enough that she now requires steroids to keep her up and running.

When we finally got to rounds, things actually went fast, which meant there wasn't a lot to discuss regarding any changes to her condition, or changes in the plan for the day. That's a good thing. Here's why...

Here are the numbers:

Weight: 12.7 (down a whole kilo from yesterday! YAY!)
I/O: -152 (the first time we've actually been net negative in fluid volume in FOREVER! YAY!)
Creatinine: .67 (up a little, but no cause for alarm)
BUN: 21 (up a hair, but no cause for alarm)
WBC: 5.6 (up from 3.1 yesterday! YAY!)
ANC: 3.6 (up from 2.8 yesterday! YAY!)
Bilirubin: 3.4 (down from 5.6 yesterday! YAY!)
CSA: 300 (down from 392... target is 250...YAY!)

So... as you can see, on paper things were good this morning! It was a strange feeling having rounds go so smoothly. Each morning, I enter rounds with anxiety for which numbers are good and which are bad because as you've read in prior posts, it's usually a mixed report at best.

At this point it was 11 am, and the major work of the day was already done. Nanny came to relieve me again so I could get out a little. My friend Logan took me to lunch and we sat on a park bench in the shade in the midst of a beautiful sunny day here. Then, I went back to RMH and took another nap; I'm still feeling like there's a bug trying to take hold. I'm on massive amounts of vitamin C and sleep, and that is helping. After my nap, I returned to the hospital so Nanny could go pick up Ali and get dinner together. Angelique brought me dinner and we hung out with Bella till about 9.


Mask time, courtesy of our good friend Sara back home... thanks, Sara!

We really miss Bella.

She feels so far away.

The docs told me today to brace for 2-3 more weeks in the P.I.C.U.

I am tired, and I am sad. I was anxious for this procedure before we got here, but I am scared of where we are. I always thought that because Bella was so healthy going into this, that her organs weren't at risk, and that her life really wasn't at risk. Sitting in my hospital chair being unable to even SEE Bella because she is now completely obscured by machines... my heart is heavy in my chest. I force a tired smile when with family, and Ali genuinely lights me up inside, but I just feel, well, heavy. This too shall pass. I know this. Yet here in America, the land of feel-good-no-matter-what, this feeling, while perfectly appropriate and natural... I feel like I'm supposed to "do something" with it. Most people medicate it, and I usually transform it, but not tonight. It is just too heavy. Tonight, I just go to bed with it, and that's okay, too.


My view from my chair of Bella...

I could rejoice in the numbers today, but numbers aren't Bella, and Bella is far more than numbers. I have been managing the numbers and the skin, but what about the girl? As music therapy professor and author David Aldridge so eloquently says, "Who is treating the SELF inside the patient?" Our vibrant baby girl hasn't moved, made a sound, or opened her eyes in just under 3 weeks (19 days now), it has worn on us, despite what the numbers say.

We read to Bella, talk to her, I play guitar for her, sing to her, kiss her forehead, mommy kisses her hands, and each time I do so, I know she can hear and feel us. After all, her ears are still working and her brain is still processing everything she hears; she is just paralyzed from responding. She is trapped inside herself. She won't remember any of this due to the drugs she is on, and for that I am thankful. We just miss our little Bella. Nothing to be done about it, it just is. I am just so scared to lose Bella. Ugh, it hurts.

Good night.

A photo essay of the machines keeping Bella alive right now...


"Rosie" is the dialysis machine that is pulling the fluid out of Bella slowly and doing her kidneys' jobs for them until they recover...


"Huggy the Bear" (its real name is the 'bear hugger') inflates a heated 'blanket of air' over Bella to help get her temp back up. Having all her blood leave her body and flow through Rosie cools her blood, so Huggy tries to counteract one of Rosie's side-effects.


"The Vent" is the breathing machine that controls Bella's breathing for her while she is paralyzed.


The EKG machine follows Bella's heart rate, blood pressure, central venous pressure, respiratory rate, and oxygen saturation. This is how we "see" how Bella is responding to her many therapies and protocol.


"The Pole" manages all Bella's IV intake. Let's see how many I can remember: Vecuronium, Fentanyl, Versed, Dopamine, TPN, Lipids, Platelets (as needed), Formula, Calcium, CSA. That doesn't include the drugs she gets through her G-Tube...

21 comments:

  1. Love those numbers! Go Bella go!
    your honesty touches all if us "out here". You are allowed to feel tired and nervous and scared. We are here for you, too. For you, Ang, and Ali.

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  2. It's okay to be scared. It's okay to be sad. God is carrying you and your family right now. He is your strength and your comfort. There are only His footsteps in the sand at this time, but He'll know when you are all ready to walk again on your own. Trust Him when you feel as though you can trust no other and let Him take the lead today because He loves you. We all love you too!! Big hugs and prayers

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  3. Oh yeah...Glad you got the latest package! Thought Ali would think those masks were silly.....and could make up a fun story to perform.

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  4. Wanted to let you know that I am still thinking of you all and praying daily. I am so sorry this is so hard. One thing on the bug looking to get a hold on you...drink green tea and sprinkle it with ginger (nutmeg is also a good one to add...I just read this somewhere). But I swear by the tea and ginger. I typically get everything anyone else brings home but last winter didnt get a thing...I would drink this combo whenever I thought I felt something coming on. Denise, WI

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  5. I dont know why I am writing this i just feel compelled to do so, and I know i was in a totaly different situation to your beautiful Bella but i just wanted to tell you that i was in a coma like state at the age of 4 due to a temperature induced seizure it was in like a trance (note i was tested for epilepsy but was fine) i could breath but was paralized and it lasted for days, i remember quite clearly that i could see and hear people and even told doctors and nurses what they said in front of me while i was out to it! i want you to know that still to this day it was the most beutifully peaceful time for me, i remember them saying she is to hot, to cold, heart to fast to slow, infection better infection worse but the very few memories i have of it was that there was such a calmness about it , no fear no frustration just calm and a sence of okness, i cant think of any words that could describe it. I truly hope Bella can feel this to x x my thoughts are with you and your family xx

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  6. I sit here staring at my computer....I can't seem to find words to express my emotions. As I worked today, I couldn't comfort my heart ache...my heart pounds for your Bella. Reading your blog tonight, opened the flood gate of tears I've been holding back. I made a promise that I would comment here each night after your updated blog for the day, in hopes that you & Ang know how much I care for your dolly. I've added Bella to 2 more prayer chains today...Pastor Chuck Smith and David Hocking (Calvary Chapel Pastors) are praying for Bella.
    Thank you Lord for another stable and calm day. Thank you for touching upon her numbers! Please watch over her tonight and through the early morning and throughout tomorrow. Please touch upon the entire staff that is working together for Bella...I pray that you give them clear and sharp minds and humble hearts. Please comfort and hold closely to you Tim, Ang, Ali & family. Please protect Bella with the blood of Jesus...and help her little body to withstand the machines, meds and all. We lift her up in prayer with burning hearts and ask that you please please let her kidneys/liver recover in Godspeed. Thank you Lord for hearing our prayers.

    Love you Bells...can't wait to check back in with you tomorrow!


    Ps...Tim, what is your mailing address there? Would love to surprise Ali & Bella with fun stuff! My email is: nicolebaca@cox.net

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  7. You are all in my prayers! Praying for strength for the doctors, Bella and you and Ang. Praying for wisdom in those treating her and praying for complete healing in her precious little body. Know that it is okay to feel scared and that we are all praying and thinking of you all daily. God Bless you and Bella.

    Kara, NY

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  8. We continue to pray for sweet Bella and your family from South Florida. I can only imagine how hard this must be for you and everytime I think about it my heart just breaks. Sending you strength.

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  9. I am speechless too. I am so sorry that you are so sad and scared. It is quite normal to feel that way right now. Seeing your baby girl all hooked up to machines has got to be scary.
    I am praying extra hard for your family. We are lifting her up in prayer. Dear God, please protect little Bella and guide the doctors and nurses taking care of this extra special little girl.
    Hang in there guys, we all love your family. God Bless. Love Leah's Nana

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  10. Dear Jesus, Thank you for holding Bella so gentle in Your hands this day. Please wrap Your arms around each of her family members to remind them that You love them and are caring for Bella.
    Thanks Jesus. sg-KS

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  11. Nothing to be "done"...just be. We are praying. And just as Bella is wrapped and covered up with machines and blankets...so are you and your family covered in prayers.
    And I'm loving those numbers...God is good.
    Kathryn in KC, MO

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  12. Came to you through Leah Turnquist's blog-hang in there-am working my rosaries for you all!

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  13. Her numbers look good today! I can understand you feeling heavy. What you are all going through is so much more than most of us can even imagine. I hope that her numbers continue to go the right direction!

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  14. Glad to hear Bella's numbers were so good yesterday! Praying for another good day today for Bella and for continued strength for you, Ang and Ali.

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  15. Sounds like lots of good news...prayers for more "YAY"'s! I'm glad you said McGuyver and not McGruber...stupid SNL skit...made into a movie, I think. Remember me to Logan.
    Take Care,
    Doug

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  16. Jack and Molly's NanaJuly 24, 2010 at 10:08 AM

    Once again, I'm speechless. Thrilled with the good numbers, and so happy you were able to do your thing without the interruptions of the herd (what an appropriate term). And I totally "get" the exhaustion/fear/questioning you're going through. It's happening because you have time to LET it happen, finally; those better numbers, etc. have given you the moments you need to evaluate exactly what's happened, and what will happen. It really IS part of a master plan; hang in there, kids. And keep the faith!

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  17. Let your body and mind rest and rejuvenate. For each day a new battle you will face, as a strong advocate, loving and caring father for Bella. Dear Lord, We thank You, we praise You and we ask for Your strength for Bella. We thank You dear Lord for directing her towards the path of recuperation, recovery and healing. Lord we ask that in this stressful period You hold each one of the Ringgolds in Your mercyful arms. That You carry their burdens and fears. Lord we ask that You continue to show us Your powers. GOD IS GOOD! Amen. Please know that my prayers continue whole heartedly for your sweet daughter. I think of her often and pray for her healing. May peace be with you this day.

    Costa Mesa, CA

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  18. I just wanted to let you know that I am also praying for you guys. Your updates are amazing, I feel like I am walking this journey with you.

    Bec (Sydney, Australia)

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  19. Just wanted to let you know that my prayers are with Bella, you and your family. My heart goes out to you all. I await daily for your updates and pray that each day is a better day than before for Bella. Your love and devotion is truly inspiring. Your outlook on life and love could teach us all an invaluable lesson. May God bless you and Bella during this recovery and healing process. Thank you so much for sharing and letting us all be with you during this incredible journey.

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  20. Your posts always inspire me to love on my own babies extra hard. 2-3 weeks seems like such a long time but I am so excited to see Bella come out of this! I will be reading daily as always and praying as well.

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  21. Tim,
    Though we don't know eachother well, I want to encourage you. God is fully sustaining you...though in your humanness you can only "be" where you are. By being honest and letting it out, you are enduring. Though you look at your dear daughter and wish for things (we would undoubtedly do the same...), be encouraged to know that God is the God of miracles. He does want you to focus on what is real and true now (not what was, or fear of what could be), but choose to focus on the blessings. Although her lifelines are machines, it is God in each of you, and her sustaining and giving life. She will feel and know your love and strength...keep keeping on. You all are an inspiration. If you ask God will fill you up to give only what He deems necessary for that day. Hang in there...we are all intervening in prayer on your behalves. In His strength,
    Tiffany Modica (and family)

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