July 27: Day +25

This beautiful quilt arrived in the mail as a gift with a matching one for Ali from one of Angelique's high school mates. Thank you, Heidi!

Here are the words:

A quiet day for some,

but not our new nurse,

annoyed by the care

that she had to give,

despite her job title:

INTENSIVE care nurse.

The manager? Off on vacation.

Her cover? The one who paid no attention

to the last time I asked

for a nurse to steer clear,

yet through Bella's door,

recently in walked this dear.

Left with only one option,

the charge nurse umbrella

she came through for me so

with the right nurse for Bella

A seasoned professional

even keeled and cool jets

Please, no more rookies,

just give me the vets

who talk less and do more

with a smile and an ease

that allows us to rest

I beg of you please.

I'm left unto verse

to spend my words freely

For the prose that precedes

today's post is clearly

not enough to persuade

the powers that be

so I turn unto you

please Lord can't they see?

It's not automatic

to care for EB

I know this, you know this

so how about we

stop for a second

take a breath, maybe two

then find your self present

with what there's to do:

Listen,

Learn,

Follow,

Expand,

Relax,

Breathe,

Smile,

Make eye contact,

FAST

For my patience is low

and my fury is high

I am not here to teach you

but maybe I'll try

to be more forgiving

patient and nice

if I could be willing

maybe that would suffice

because to wish any different

is fantasy and lore

your here on you "shift"

like it's one big chore

never mind that a life

may hold in the balance

just as long as you get

your break allowance

you'll check all your lines

and empty your bags

but don't touch my daughter

unless you have asked

what works and what doesn't

the right way to treat

a helpless mute child

whose skin is so weak

that fingertips tear,

tape shears right away

she can't tell you how

you have hurt her today

It's left to me,

on this little page

I have to release this

my soi disant rage.

Here are the numbers:

Weight: 12.8

I/O: +236

WBC: 4.0

ANC: 2.6

BILI: 2.1

CSA: 297

Creatinine and BUN are being dialyzed so they are no longer relevant numbers.

BMT docs are not worried currently about WBC and ANC numbers. CSA is back on track. Bili continues to drop which is SUPER.

The goal is to end up at ZERO for I/O's right now as Bella's blood pressure is a little soft and her echocardiogram suggests we might be pulling fluid out of her blood faster than it can infuse back in from the areas it has built up.

Nanny leaves early tomorrow morning, and we say THANK YOU, NANNY for helping out so much these past two weeks.

Docs are overall pleased with where everything is at right now with Bella. Now, if I could just get some headway with the new nurses Bella keeps getting. Now that she is on Prisma, there are only certain nurses that are trained on it, so the applicant pool gets smaller. The more experienced nurses are where it's at. They aren't freaked out by EB. I hate that I am so worn out and it is more from the staff than my daughter's condition, and P.S. she's in CRITICAL condition.

I'm sure many of you have faced this dilemma in your lives at some point. 23 days in an ICU and I have no buffer left. The difference between getting a good nurse for Bella and a bad one makes or breaks the day, and I thought I had my fill of nurse manager conversations. Guess not.

I need some rest. Thanks for listening; it is stormy outside tonight, and apparently it's a little stormy in here as well! Good night.

Ali catching a "daddyfish" with her Barbi fishing pole. Don't ask what kind of bait she used.

Ali decorated cupcakes for us for when we came home from the hospital tonight! Sweetheart!