Wednesday, July 21, 2010

July 21: Day +19

Bundled Bella in fresh sheets, dressings, and blankies...

Holy cow.

I need some dramamine... for the sea sickness... from the roller coaster... that is Bella... that is BMT... in the PICU.

Okay, bottom line: we had an otherwise pretty rough day end with a pretty amazing turn of events. Here we go:

Rounds: Here are the numbers:

Weight: 13.9 (highest yet... Bella, no going over 14, it's not very girly)
I/O: +354 (not great but half of the day before)
Creatinine: .95 (WOOOHOOOO! Less than HALF of the day before!)
BUN: 31 (WOOOHOOO! ALSO less than HALF of the day before!)
WBC: 5.6 (another dip... to be expected in this first week off G-CSF)
ANC: 3.6 (again, another dip...might have to get some more G-CSF... not uncommon)
Bilirubin: 3.3 (still moving up even faster... sign of continued liver slowdown)

No pee from Bella for another day in a row. I think it's been at least 3 days, could be 4 since she's peed anything. Again, it's not her bladder; her kidneys aren't producing any urine to go into the bladder... all the fluid just backs up inside Bella.

Can you count the wires and tubes going in and out of Bella? How many?...

The PrismaFLEX (name of continuous dialysis machine) was still running this morning, despite the ominous report from the prior night nurse. That was a good thing. However, overnight, Bella had to go up and up on dopamine. Dopamine is a "presser," which means essentially its job is to raise Bella's blood pressure. We have needed increasing levels of dopamine to maintain an already low bp (like 60's - 70's / 20's - 30's). As the dopamine went up, the blood pressure didn't go up with it, in fact it kept sliding downward.

So, when Christina (BMT fellow) came in this morning... she had that look in her eye, and I knew something was up.

"Because of Bella's hemodynamic instability, we can't begin her defibrotide today..."

Last week, Bella wasn't sick enough to get defibrotide. Today, she was too sick. Talk about a small window to give a drug. I understood the explanation and it made total sense to not compound Bella's blood pressure problem with another anticoagulant that would further thin her blood and lower her pressure. timing IS everything, both for positive AND negative outcomes. So, it will have to wait till hopefully only tomorrow. The good news is that we are still at the early early stage of V.O.D., so burning a day to wait to see if her bp would stabilize was a prudent move.

As the day progressed, the need for dopamine increased. The max dose we could give Bella was 20, and we got to 19. There is a second presser, epinepherine, but using two pressers automatically disqualifies Bella for the defibrotide study, so we were really backing into a corner today. This big question was, "What is behind this DROP in bp?" I asked every doc who came to see us, and told them not to worry about scaring us, but let me in on their thought processes. We had really great conversations, and at one point, while the BMT doc, BMT fellow, and ICU doc were in the room together, I had them all give their 2 cents, and the two docs started brainstorming about what it could be, and it triggered some decisions on preventative meds they could give Bella to head off what they were thinking about... 'just in case.'

I have to tell you what a great job I think the attending ICU doc, BMT doc and fellow, and nephrology doc and fellow are doing working together and brainstorming together on Bella's behalf. Dr. Somani, the ICU attending doc, apologized to me today in the most heartfelt way because we've had such a rough 48 hours. You can tell he is "all in" when he is thinking and discussing her case. He is just so 'thought-FULL.' Thank you for all your prayers blessing the staff; the 3 docs overseeing Bella right now are ON THE CASE.

Anyhow, Dr. Wagner was due over at our room at 3:30 to observe wound care so he could see Bella's skin. It was great to get his eyes on her, but I was petrified to roll her over due to how sensitive the PrismaFLEX was being. I knew that if I rolled her over to see her back, the machine would crap out. Luckily, overall, Bella's skin is doing well, so we can hold off on dressing changes as often right now so as not to disrupt the main treatment: the dialysis machine.

However, the real serendipity occurred when the dialysis machine died on its own just before I was considering whether or not to attempt dressings. So, we were given a couple of hour window to get as much "messing with Bella" done as all of us could do before she went back on dialysis yet again. So, Dr. Wagner looked at Bella's problem areas, and his comment was:

"That's nothing..." turns of BMT complication, Bella's head and back look great by comparison to other kids in the study! That was great news indeed because now we can leave Bella alone for a couple of days of straight continuous dialysis without risking running the machine amuck in the midst of my dressing changes.

So, we got ready to start the new machine yet again, and the most wonderful thing happened!

Bella's blood pressure DOUBLED.

It got up to 120's over 80's! This allowed the nurses to cut Bella's dopamine in HALF, and allowed nephrology to set the machine to actually lower her overall fluids! When we left her tonight, she was STABLE and CUTE!

Bella's fabulous socks of the day!...

I have to go to bed as I am EXHAUSTED by the day's events. Rest assured. YOUR PRAYERS AND THOUGHTS AND INTENTIONS ARE WORKING. Pray tonight that this was no fluke. Pray tonight that this is a corner turned to better things. Pray tonight that tomorrow we can start defibrotide, and that her body can handle it. There was much more, but I can't keep my eyes open a minute longer. I love you all, and we thank you again; your energy is being felt up here!

Before I go, I have to mention that Ang and I got to finally meet Sam and Marybeth Sheridan tonight at RMH when we got back from the marathon day! Sam is patient number 7 in the study, and the first patient we followed online through transplant. WE really connected with them pretty deeply during their transplant, and it was such a treat to finally be hanging out with the two of them face to face. They are a lesson in strength, perseverance, and faith. Marybeth posts updates on Sam's journey at:

Instead of "Where's Waldo?"... "Where's Bella?"...

Good night.


  1. THANK YOU Jesus!!! Whew hewwww!!! Her bp doubling is! I will continue to pray...prayer is powerful and we have to keeping on praying! Thanks for the update Tim...your family is shining the light to the world!

    We praise and thank YOU Lord!!!

    Dear Lord, please continue to watch over Bella and the entire staff that attends to her. Please watch over her with a double guard of angels around her. I pray that you please touch upon her kidneys and liver, so that her Bilirubin count will slide down just as fast! Thank you Jesus for watching over her...please continue to watch over her tonight and keep the nurses sharp in mind and to do what is best for Bella. Thank you so much for your love, mercy and grace. AMEN

  2. That is AWESOME news tonight. I'm so happy. I will definitely pray that all of her good #'s were not a fluke and she just continues to thrive. Stay strong!!

    Take care,

    Amber McLaughlin, CA That is

  3. I am really confident that this is a positive turn over! I'll pray for that. Hang in there Tim! Things will be better soon!!

    God is good all the time!

    Carla and Matilde, from Portugal

  4. What wonderful news! I am continuing to pray for Bella, may her numbers get better and better...may her liver heal, and long live the dialysis machine! It sounds like the docs might have begun to have an inkling that they are part of something so much bigger than just participating in this trial. May God's grace fill them up. And prayers for sweet little Bella...beautiful baby girl, she will be well. Blessings for you all.

  5. I actually said, "YAY!" out loud when I read about Bella's BP going up. Praying for your family... thanks for keeping us in the loop.

  6. Go, Bella,go!
    Lots of prayers from home, I've enlisted the best!
    Thanks again for the updates despite the exhaustion. It gives us the focus for prayer till the next update. I love "stable and cute". Fantastic.

  7. Thank God for stable and cute!!! I am so relieved that the doctors are finally getting IT. Sure hope they stay on board and consider Bella first and their agendas second.
    I will continue to pray for your beautiful Bella and the whole family. What a trying time it must be, but be strong and keep that FAITH alive. Love you guys. Love Leah's Nana

  8. Thank you so much for the "DAILY" updates! I continue to pray for your sweet Bella and all of you!

  9. To God be the GLORY! Thank you Father for a positive day....and for very cute socks.
    I'm still praying...and I'm not gonna stop.
    Kathryn in KC, MO

  10. Thank you Jesus for this healing step in Bella. For helping her parents to live through another hard day. sg-KS

  11. Tim
    Each night I've said a prayer for Bella, you and your family. I'm sure many others in the MWC and Prep communities are doing the same.
    I pray that Bella's doctors receive patience, understanding, wisdom and a cooperative spirit to coordinate her care and healing.
    All the best

  12. Lynne, Bob, Jack and BenJuly 22, 2010 at 9:08 AM

    This was no fluke. This is a corner turned to better things. Soon, she can start defibrotide, and her body will handle it and heal. We are praying for all this, for her doctors to have wisdom and compassion and for you to stay strong. Love you guys!

  13. Yeah! This is no fluke, you all are turning the corner to better days. We, and everyone I know, are praying for you guys! I have been sharing the blog with friends, family, and co-workers and everyone is pulling for Bella!
    We love you and hold you close and can't wait to see you!
    Love Always,
    The Vanderbooms

  14. Lord, I pray the the streak of improvement continues. Please allow the machines, nurses and doctors to be effective during this HEALING time.
    Lord, please free Bella from this tremedous fluid load that has overtaken her body.
    Holy Spirit, please work magic on her liver.
    Lord, I trust that you will give her family the courage and faith and endurance during this difficult time. We love you Lord and thank you for allowing us to be apart of this beautiful family's story/life.

    Anonymous in Louisiana

  15. Jack and Molly's NanaJuly 22, 2010 at 9:46 AM

    I sensed a change of tone in your blog of last night as soon as I began reading. Apparently your words didn't fall on deaf ears, and the staff is communicating (what a concept). I couldn't be happier for you all. Continued prayers for strength, patience, and staff support. God bless la bella Bella.