July 28: Day +26

Groundhog's Day...

...is the best context for what life is like up here. The days just roll by one after the other and it is hard to tell what day it is. The past looks the same, and no one is giving us any future past "one day at a time." So, we live in the eternal present, moving from morning to afternoon, to evening, to bed. Wake. Start all over again.

Within that sameness there are little changes that are like blips on a radar screen. Bella has grown tolerant of her sedation meds and has become a bit of a jumping bean on her bed. It's a little freaky to watch, because it looks like she's getting electrocuted, which in fact is not far from the truth. Signals to move are reaching out through the fog of sedation and muscles are firing in the most haphazard, uncoordinated way. When you watch her vitals, they don't appear elevated, so it's hard to say that she's agitated, upset, or in pain when it occurs, but it is scary to watch. I asked about seizure activity as well, but the muscle spasms don't resemble seizure activity, her pupils look good, and her vitals are stable, so THAT is a big relief.

The good news about this is that as she moves through awake and sleep cycles, her activity is appropriate. There are hours at a time that she is "deep" and resembles the peaceful slumber we've observed over the past 3 weeks. However, when she's "light" she has been progressively more and more physically animated over the past 72 hours. So, the docs upped all her sedation meds by 10% today after we gave her close to 20 combined boluses yesterday on top of her continuous drips.

Here are the numbers:

Weight: 12.3 (good... down .5kg from yesterday)

I/O's: +124 mL (not sure how she's up on fluid and down on weight... but it's only up a whiff)

WBC: 5.8 (YAY! up from 4.0 yesterday)

ANC: 3.8 (YAY! up from 2.6 yesterday)

BILI: 2.3 (holding steady in the 2 - 2.5 range - a good thing - means V.O.D. is not progressing)

CSA: 389 (up from 297. again, no one can make any sense out of this as they have been lowering this drug over the past few days)

They switched 'pressers' from dopamine to norepinephrine. This drug will squeeze more fluid out of the blood vessels throughout the body without drying out the heart any further. We've also had to go back up to the full "stress dose" of hydrocortisone to attempt to keep Bella's blood pressure up.

On a good front, we went up on J tube feeds again today, so the more formula she gets in her j tube, the less TPN and saline she needs in her PICC.

On a sweet side note, it was Ali's first "Open House" tonight. It was really cute having mommy and daddy getting to see Ali's art on display at school. She was so proud. Awesome parent moment amid a lot of not awesome parent moments.

Gotta run; my battery is about to die. Thanks for your ongoing love and support. More tomorrow!