Sunday, August 1, 2010

August 1: Day +30

Well, Bella had another stable day (good news), but her blood pressure still hasn't come back (bad news). This has been an ongoing trend for the past two weeks. We're on a full "stress dose" of steroids and a vaso-constrictor to help keep her pressure up, yet the bp is still hovering just above trouble while intermittently dipping down below the threshold of concern. The docs think there may be an infection, but Bella's been on antibiotics, and her cultures are consistently coming back negative. This blood pressure issue is clearly eluding the docs. Each ICU and BMT doc that has seen her has tried their hand at this situation, but come up scratching their head.

IF we can keep "massaging" her blood pressure to behave while we S-L-O-W-L-Y get the remaining 1.7 kg of liquid off Bella, things "should" get better. Tomorrow is a CRAZY busy day. Here is the itinerary:

Dressing changes
Dialysis Circuit change
Liver Ultrasound
Skin biopsy and blister test

We look forward to hearing the result of her liver ultrasound. PLEASE pray that there is NO MORE BLOOD REVERSAL in her liver. We need that very specific result. Please ask for that. That would be a HUGE step in the reversal of her V.O.D. We are so scared of the drug she is on to treat it, and would LOVE to discontinue it as soon as possible. Her Bilirubin count dropped for the third straight day, so we PRAY that her V.O.D. is going away for good! It would be so great to worry about one less organ, and just pour our thoughts and cares into Bella's kidneys to come back to her. Here are the rest of the numbers:

Weight: 12.4 (not looking too closely at this as they are not consistent as to when they take her weight)
I/O: -51 (good job, Prisma!)
WBC: 6.8 (took a little hit - down from 8.4, but not unexpected to fluctuate)
ANC: 4.8 (same as with WBC - down from 5.8 - again, no cause for alarm)
CSA: 200 (YAY! finally getting down to some safe numbers here)

We really hope that if they can keep her CSA at or under 200 all week, it will help her kidneys bounce back a little quicker.

In other news...

Ali is up at our friends the Boschee's cabin having A BLAST. It was sad leaving her as we had a lot of fun just playing together for the past 24 hours. I don't remember the last time she and I had that much unobstructed time and space to just play. I fell in love with her all over again, as the saying goes. She is a magical child, truly.

Should'a put that hair in a pony tail I guess... SNAG!

She had her maiden voyage fishing this morning! She had been FIXATED on fishing since watching it on Mickey Mouse Clubhouse. Little did she realize how comparatively boring fishing in real life is compared to Disney! I took her out on the SeaDoo again today, and we got a little more adventurous on it. She loved every minute of it, as did I. She also got to watch as daddy waterskied successfully all the way around the lake today for the first time in my life! It was really cool watching her watch me from the back of the boat as I accomplished something I had never done before. It made it so much more special having her there with me.

Angelique will get to try her hand at as much fun and adventure as she wants when she heads up to the cabin on Saturday. I look forward to her returning with equally fun and cute stories to tell!

Thanks again for all your love and support. Not a day goes by in all of this that we are not present to how much all of YOU are giving to us. We FEEL your support, like a breeze at our back, helping us take that next step on this marathon of a journey. Thanks.

Good night.


  1. I'm so glad to hear she is doing so well. Prayers will continue asking that her BP gets better and that she completely gets over this darn VOD. You have such a beautiful family. It's good to hear you got to spend so much wonderful time with Ali. I'm sure she really enjoyed that special time with her daddy.

    Stay strong.

    Take care,

    Amber McLaughlin, CA

  2. What a amazing moments you and Ali shared this weekend! are such a great writer and it makes reading that much sweeter! You got it, I will pray for Bella's liver!!! God is good always, and I pray that he continue to watch over Bella doll. I hope that the box of goodies I sent made it there....the butterfly blanket reminded me of Bella when I passed by it in the store...had to get it!!
    May the Lord be with Bella, family and staff tomorrow, as the itinerary is a full plate...may HE guard Bella with a double guard of angels!
    Praise God for her numbers...Please dear Lord, let Bella return to 5D soon!!
    good night sweet love bug, Bella!

  3. Seriously. Magical is the perfect word for Ali. She really is.
    I'm so happy about your much needed time together!
    Bella has proven to be pretty magical as well. Following in big sisters footsteps already. Praying for all the right numbers and results. Love these "stable" updates!

  4. What precious time you were able to spend with Ali! May the serenity of the surroundings, combined with your daughter's magic, linger in your heart and keep your spirit afloat all week... Praying for this busy day to flow smoothly. Praying hard for NO MORE BLOOD REVERSAL in Bella's liver test. Praying for VOD to be banished, forever. Grateful for friends who are really angels...and always, Bella, beautiful baby girl...will be well!

  5. So glad you & Ali got to spend some much needed time together!Still praying that precious Bella continues to improve. Praying that today is better than yesterday & that everything flows smoothly.God bless all!

  6. Hi Tim: So glad that you had a chance to just relax and enjoy Ali. You two look like you had loads of fun.
    Extra prayers for no more blood reversal and for sweet Bella's blood pressure.
    Keep the Faith. Everything is in God's hands and God Is Good!! Love you guys. Love Leah's Nana

  7. Love the reference to Angelique's Song, ...breeze at our back..., now your song is going to be in my head all day :)
    Good luck with rounds and tests today. Holding the vision that the biopsy shows 100% Ali cells. Much love to all.

  8. I pray that there is no blood flow reversal and her CSA number stays down!