'like pulling teeth'

that's what it's like

-trying to get some information about my kid

from this hospital and my daughter's nurses

the nurse's station IS ACTUALLY annoyed when i call

her various nurses DO NOT have the time of day for me

(maybe they're busy) always?

-i don't think so, i was there and watched...

i'm getting no info from my daughter

(so i don't know if she can even text or email)

-even though i've heard she's been 'on the computer'

and no word from her mother (there all alone to take care of acacia)


the REAL STORY, however is that

she IS in good hands and so am i

-and that...
SHE DID DO THE BIPAP MACHINE LAST NIGHT
SHE IS SITTING UP IN HER CHAIR
SHE IS ON HER OXYGEN MASK (NOT ON THE VENTILATOR)
SHE DID GO FOR ANOTHER WALK TODAY

and that ...'she's resting comfortably'...

worn out

the nurse was 'ummmhu' 'ummmhu'

-pretty non-communicative

but what i did get outta her

was that acacia DID go all night

with the BIPAP machine

-which should have helped her struggle with breathing

and that now, she's back on her 'trach' mask

-breathing on her own

she told me that she went for a little walk

again

this morning and that she's a little

'down-in-the dumps'


i guess so, god love her

she's getting worn out

and i'm sure sick and tired of all this

workin' at it...

the nurse said she's still workin' it

been off the ventilator and

on the 'trach' mask

working hard to breath on her own

they said that she can't do this

for much longer

she's gonna wear herself out

they tried to put her on this 'BIPAP'


What is a BIPAP Machine?
The BIPAP machine is a specific type of breathing machine that helps the patient breathe. It is a small, bedside respiratory machine connected to tubing and a facemask worn by the patient. The BIPAP machine does two things - it helps push air into the lungs and helps hold the lungs open to allow more oxygen to enter the lungs. Each time the patient breathes, the BIPAP machine assists the patient by applying air pressure to the lungs while the patient is breathing out (exhaling or expiration) in order to hold open the air sacs in the lungs.

-last night, but she couldn't handle it

but the nurse said they gotta try again tonight

(the doctor said he'd lower the pressure)

so tonight might be a little tough, god love her

she's still workin' at it

and fightin' it

(good thing she's a fighter)

coming up on six weeks

it's almost been 6 weeks

6 weeks in an ICU bed

6 weeks with tubes everywhere

6 weeks no food, no talking, no nothing

yet in these past 6 weeks

she's made such strides, come so far

touched so many hearts

and been the focus of so many fears and tears

and prayers and love

such an outpouring of concern and compassion

you've all been so loving and wonderful

and yet, she's been there, in that bed

for 6 weeks...

all night long

all night

yes

she was off the ventilator and breathing on her own

-all through the night!

the nurse is very encouraged

she said she was on the computer

but i can't get her to email me

kids these days, teenagers

texting and im-ing and emailing her friends

(not dad)

i'm so happy she's able to do it and that the hospital

has a good wireless going for her apple

so she can do this...

that's all for today

next, i'm gonna talk about what the last six weeks have been like...

CarePages Update

...FROM HER MOM

Another great day! Acacia walked down the hallway!
She was able to walk with the Respiratory Therapist walking with the oxygen,
Paul the nurse walked backwards holding onto Acacia and she
"pushed" him all the way down the hallway!
The doctors were all in the hallway everyone was cheering her on!

The doctors said they will never figure out what caused Acacia to crash,
and they really don't know what to attribute her turn around to,
but they are thrilled as am I. I don't care as long as it continues.

The plan now is to put her on a B-Pap machine to help her breathe tonight
with the trach mask, if she can do that for a few days and can continue to progress,
she will be able to go upstairs sometime next week!

Then in the next few weeks if all goes well they will attach a speaking valve to the trach,
and eventually try and downsize the trach so she can begin to eat.

Still a long road, but at least there has been sunshine these past two days.

another walking day

the nurse said she's 'good' today

she's on her 'trach mask'

-breathing on her own, with her new lungs

she's gonna take another walk today

and the nurse is happy with her 'progress'

me too



thank christ!!