July 22: Day+20

Stable and Cute... continues!

It was a quiet day for Bella (at long last). We had a little action in the morning with unfortunately yet another new respiratory therapist who was on autopilot. Some day, I feel like we'll have met and worked with everyone on the unit. On that day, I'll either be happy because there will be no more teaching, or sad because we will have been on the unit so long that we had the occasion to meet everyone who works there!

Morning rounds was another case of good news / bad news.

Here are the numbers:

Good:

Weight: 13.7 (DOWN .2!)

I/O: +100 (closest we've come to net zero or fluid loss since who knows when)

Creatinine: .53 (We've finally reached our target of .58! YAY!)

BUN: 16 (best level to date - yay dialysis!)

Bad:

WBC: 3.1 (still falling, but to be expected)

ANC: 2.8 (still falling , but to be expected)

Bilirubin: 5.6 (has doubled in two days)

From BMT point of view, things aren't the greatest with counts, but no signs of GVHD, and wound cultures continue to come back negative for any fungus or bacteria, so, we'll call it a draw?

From GI point of view, Bella was stable enough to start defibrotide today. PLEASE pray that:

a) it works

b) it doesn't give her a stroke

Her right leg changed color overnight to a greenish yellow from the increase in bilirubin and she officially looks jaundiced. What kills me the most is that it is day +20, and I'm pretty sure it was day +12 that we first heard about defibrotide. By day +13, we were ready to add it, and we had to wait 7 LONG days and watch this disease get worse before being allowed to treat it with THE ONLY KNOWN drug that can prevent it from killing her. That is so hard to deal with. It just bites at me heels all day long. I would punch the desk in anger, except I am simply too exhausted to do anything more than type right now.

From nephrology (kidneys) point of view, we are happy in that neither the dialysis machine not her Hickman line are not clogging, and Bella is tolerating continuous dialysis. I think we will finally see some fluid off of her in the next 48 hours should all things remain stable. Nephrology is happy that she is on defibrotide because, as an anticoagulant, it lowers the risk of the machine or line clogging even further... so long as it doesn't give her a stroke. The sad part of nephrology is that her kidney condition was escalated from "acute renal insufficiency" to "renal failure" in rounds this morning. She is totally dependent on dialysis to survive right now. Not gonna lie, it's pretty scary.

The newest tube in Bella's life... a heating blanket to offset dialysis cooling her body temp...

By about 11:30 am, I could tell I was running out of "health points," (like on a video game!), so I called nanny to come in and relieve me since it looked like it would be a quiet rest of the day for Bella. Wound care was done yesterday and doesn't have to be redone till Saturday at the earliest. We redid her headgear completely this morning, so that will be fine for a while now. So, I came back to RMH and promptly climbed into bed for a nap. 3 hours later, my body told me that if I wanted to be at rounds tomorrow morning healthy, I better not plan on leaving this room. So, I listened, and I haven't. I can feel a cold right outside the doorstep, and I am not opening the door to let it in! Nanny watched over Bella during the afternoon, and mommy went over after dinner while nanny and Ali played BINGO at RMH. I'm really grateful to have nanny's love and care around at this time.

Now it's time to get back to bed. Just didn't wanna leave you hangin'...

Story time for Ali!...

Finally, Angelique, Nanny, and I are repeatedly moved and touched by the beauty and generosity of your comments. They're like a V8 for our spirits! Thank you for them, and please keep 'em coming. They help us more than these words can convey.

Good night and God bless you.