Monday, September 20, 2010

September 20A: Day +80


And the days just go on and on...

It is Day +80 today. That no longer has any meaning. It used to mean that we'd be hunkered down in the Ronald McDonald House, going to clinic once a week, and staying out of sight watching endless re-runs of Mickey Mouse Clubhouse until Day +100 when we'd head back to California.

When you forecast how things are going to go in transplant, there are milestones, or average milestones, that most kids reach that you figure you will too if you are on track and things are going well. You figure you'll be out of the hospital by day 50 or so and hanging out at RMH and the clinic, expecting the occasional fever to land you a night or two back on 5D. Such is the way with many of the other kids here right now. I see their moms at RMH, then, I see them back up on the 5th floor. Trust me, they're not visiting friends.

As I watch this rhythm of treatment, I cannot help but feel like a stick that has drifted to the side of the river and gotten caught in a little whirlpool, no longer flowing, but instead, floating in a circle away from the progress of the main stream.

I cannot imagine how my next door neighbor feels, who is past Day +100, past the day they were to go home, and instead, on 5C. Our thoughts and prayers go out to Elizabeth, and her mom Marsha.

Sorry for getting off to a weary start. Something about the date and day turning over to the 20th and +80 hit me today. The last 3 weeks have been an utter blur, and the days just had no meaning. Now, I really feel like we're way off base, with no end in sight. Bella hit 15 kilos today. She is so big, it doesn't just hurt us looking at her, it hurts her just being that big. Plus, she is going through withdrawals, so she shakes like a leaf on a tree when she's awake. She cried today a couple of times. That was rough. We are moving into a new realm of pain and suffering with her becoming awake and aware of her pain again. Good times.

Okay, I think that's enough gloom for one day. Onto the good stuff. We changed her circuit and her dressings on her trach today. Her skin looked pretty good underneath overall, and I got to clean around the trach, which made me feel better. We got to clean her ulcer today for the first time since last Wednesday. That, unfortunately, is looking worse, but I really didn't expect any different. The good news is that when we roll her over to clean her head, the trach is infinitely more secure than the ET tube was, so she can hang out on her side as long as nursing has time to lend a hand to hold her (when she's off prisma). When she's on, we have to roll her the opposite way, and this causes the A-line to back up, so we don't want to leave her on that side for any longer than necessary.

She is continuing pressure support trials and tolerating them well.

After cutting out ketamine and weaning the rest of her sedation by 10%, Bella is in a tough spot. When she is awake, her heart rate is 180, her blood pressure is 105 over 80, and her respiratory rate is over 40 breaths a minute. So, she is AWAKE, and PISSED OFF UPSET. We think it is mainly pain from the trach, and withdrawals. However, when she sleeps, her heart rate drops to 120s and respiratory rate drops to 20 (good) but her blood pressure drops to 50s over 30s (bad). It's as if she's not far enough out from under the sedation to keep her blood pressure up when she sleeps, so we have to wake her to revive her. Hopefully, as the sedation wears off, her BP will be able to withstand sleep.

Tomorrow, we'll do dressing changes on her lines, legs, and arms, and ulcer. We won't do the trach again until the new, custom extendo-trach arrives. They had to special order an extension trach that will just be a thin tube for a few inches before it opens up to the big hole at the end, thus making it more comfortable and easy to care for with so much fluid on board.

Please pray that the docs can figure out a way to at least keep Bella somewhat comfortable through this difficult transition process. Please also pray that her body withstands the rigors of withdrawals. Please send us comfort as well as we watch Bella try to cry, speak, and make sound only to realize she temporarily has no voice due to the trach. As a musician, I am hyper-sensitive to sound. I walked in to the O.R. and saw a giant hole in Bella's throat and it didn't even faze me. What fazed me today were the awful sounds of suctioning the trach, and the awful absence of sound when I saw Bella open her mouth and exhale, then begin shedding tears, all like it was in a silent movie. I can't WAIT to hear her yell at me again. Imagining her laugh is just too far out from my view so close in the trenches. I'll just take the yelling at first and be grateful.

Please don't misunderstand the tone of tonight's post. Beneath the worry and concern I feel is a quiet but deeeeeeeeep-felt gratitude to have witnessed Bella's FIRE so intact today. I KNOW she's not giving up, and deep inside, her fire reignites mine. On top, there is a weariness as if I have to head back to the front lines right after a 3 month campaign, but today I smelled victory. I saw Bella's fire, and man, it's an inferno.

God, you understand all things, and feel all things. Thank you for making this mystery of living so palpable, so mysterious, that no matter how many days in a row I live, tomorrow always is 100% unpredictable. I may whine along the way, but I give thanks for this GRAND ADVENTURE called life. It is amazing.

P.S. Children's Cancer Research Fund brought PUNCH PIZZA up to our floor tonight. I told them that had I known last night they were coming tonight... I STILL would have gone anyway. Told you life is unpredictable!

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

God night.

Ali made an art project out of me after pizza...


  1. I Love you guys.
    My heart is breaking and smiling to "see" Bella's fire....

  2. heaveno to y'all too! praying for all of your intentions tonight. bella is one tough firecracker:) great to see her beautiful eyes open!
    praying for a happy tomorrow!

    god bless y'all!
    w-s, nc

  3. Tim,
    I have never posted a comment before, but I have been reading and praying for your family and Bella for months. You have been such an inspiration to me as a mom and a nurse. You are truly an AMAZING Dad! I am just floored and humbled by your constant ability to see the positives and challenge all that read your beautiful writing to see them in their lives too. God bless you and your family and sweet little Bella, what a strong little fighter she is, someday she will read this blog and be so proud that she has you as her Dad!
    atlanta ga

  4. Bella is going to give you heaps when she is a teenager. you so are not going to getaway with posting those chubby cheek photos!!prayers prayer prayers

  5. I can't imagine how it must feel to see her pissed off and upset, but glad that she does still have that fire in her. It will continue to serve her well, I'm sure. We continue to check in on your blog every evening and have shared it on Facebook, so several friends do so as well now... the more thoughts and prayers the better!

  6. Outside of the puffyness, Bella's face looks REALLY good. Hopefully, these speed bumps will be over soon and Bella can enjoy new, healthy skin. Just think, this time next year, we'll be playing phone tag to set up a time we can have a playdate! Love you guys! Jennifer

  7. Every day I practice my piano. Every day I get up from the piano several dozen times after playing a piece of music or doing my technique. Everyday I see the little egg shaker with the butterfly dozens of times. Every time I say a little pray for Bella.
    Love & Prayers
    Russ, Jen, Cody, Casey, & Celeste

  8. Sending lots of prayers and both physical and emotional comfort to Bella and your family tonight. She is so sweet. You guys are strong and have so many people praying!

    Lots of love,
    Kristi in Colorado

  9. Thank you Lord for making Bella such the little firecracker! My heart aches reading the post tonight....but I am thankful and grateful that she has a wonderful Mom, Dad & sister that feed off of each others fire! Keep on fighting Bella Doll...I'm praying for you and am on the sidelines cheering and praying for you....I BELIEVE and have FAITH....God is GOOOOD!
    nicole b

  10. Your poor, sweet, swollen baby is breaking my heart! I am at Jesus' feet, praying for her. May God bless you and hold you up!

  11. So lovely to see Bella's eyes open.
    She looks better everyday.

  12. Hi Tim: Reading your update today was like a roller coaster ride for me. Started with that picture of beautiful Bella with her eyes open. I was thrilled. Reading on about the trach, I started to cry. Been there and done that. It is heart breaking to see them cry and no sound at all. The sound from suctioning and all that goes with it.
    Hang in there and please keep the Faith. God Is Good. Love Leah's Nana

  13. Stay strong Bella, and stay strong Mom and Dad, you can DO it!!! I want SO SO SO SO bad for Bella to get out of there, and it is so sad to hear that she is in so much pain. I can't imagine what you must feel. I get upset when my baby gets shots. You are both amazing, and Bella is beautiful. It is likely the most comforting thing for her to see you by her side as she starts to become more awake and probably scared too. STAY STRONG!!!
    Amanda, Bryce and Corynn

  14. Blessings on each and every one of you. Still praying Bella's kidneys wake up and load her diapers with pee, pee and more pee.
    It's a long slow road, but this, too, shall pass.

  15. I have learned in life the truth that everything has its equal and opposite re action, and I see you see that too. The lowest of the lows show you the highest of the highs. You are incredibly special people and I am witnessing bella guide you to your highest enlightenment and grow closer to your purpose. How far will the ripples bella has dropped in all of our ponds go? Thank you bella, I love you and am constantly praying for your health and comfort

  16. Praying for physical and emotional comfort for both Bella and the Fam. I cannot even imagine how you do what you do day in and day out. You are so much stronger than you give yourself credit for. You AND Bella inspire me in ways I didn't know were possible; thank you for that.
    We continue to pray so so hard for Missy!
    Lots of love coming from S. CA!
    The Vanderbooms

  17. Praying for you all. You all look vry tired, hope Bella will be better soon, and you all will be able to relax a bit.
    Many goodmwishes to Bella!

  18. Tim....sending thoughts and prayers of strength and healing your way as always..we think of Bella everyday and we truly understand the emotions you express about the's all heartbreaking...I remember the first time casey cried real tears and not a sound came out..we all cried with him.. I couldn't wait to hear his voice again..Now, I can't get him to shut up! Things get better..with each new day brings a new beginning...Stay strong..cry and scream when you need to...(you're entitled)..but at the end of the day, look for the blessing hidden in each's there...some days you just have to dig a whole lot deeper to find it...Call or email if you ever need to vent...Hugs to you all...
    john, Beth, Zachary, Casey and Becky

  19. Hi Tim-

    I haven't posted before either- I found you through Jonah's and Tripp's blogs. Just wanted you to know that Bella and your family are on my prayer list. Praise God for your reliance on Him in ALL things!

    Laura in TX

  20. Praying for your family ever since I found you guys via Jonah's blog. You guys are so amazingly strong....and your Bella is amazing. God surely has some incredible plans for that little life!

    Watching my child get off a vent was one of the hardest times I ever went through, and it was without the added issues Bella is facing! Praying for you guys, and that soon this all is a memory, and your sweet Bella is telling the world, "Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away." God bless!

  21. Keep fighting young lady.
    My heart aches, but I have hope.

  22. Praying for God to give you continual strength and peace. As you venture into this new place, may you feel God's mighty presence and sovereignty over all this situation.

    Often I look at name and purpose in situations. As you know, Bella's name means beauty, but other translations "Grace, favour; easy to love." God indeed gives names for a Divine purpose. In addition, it is evident Bella is a fighter, and although you are saddened by the 'voice' she temporarly does not have, if you can find strength, maybe play guitar and sing to her during the day, when she is irritated, in pain, and crying, and just needs daddy's voice. You and your wife's voice is a huge source of comfort to her. Although it is so hard to give when you are depleted, she needs you now. Remember music can help mask that pain response, regulate her breathing--etc.--you know. But, hopefully to comfort you and help.

    You all are SOOOO brave! Courage comes from enduring life's trials, and giving glory to God--sending you all hugs and love

  23. It breaks my heart to hear she is in pain but she is such a fighter. She's gonna get thru this and have beautiful skin to show for it. Stay strong.

    Take Care,
    Amber McLaughlin,CA