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.