CarePage Update

Acacia is trying her hardest to breathe on her own.
She did about 1 1/2 hours on the trach mask yesterday and 3 hours today.
They put another line into her g tube as her stomach can not handle anything
-so now the feeding goes right to her intestines, she still is nauseous and having other issues
-but it seems to be better.
They took her off the 24/7 dialysis and now she is on the three hour one three times a week.
They took the arterial catheter out of her leg last night,
which is another step in the right direction.

Compared to a week ago, things are so much better. Such a long road.
She asked again today on her chalk board about Christmas, and then started to cry.
It is all so overwhelming. I won't answer her as I don't want to disappoint her,
so we will take it a moment at a time.

Posted on November 7th from Acacia's CarePage Updates -Children's Hospital Boston

sweet, sweet music

early this morning i took a chance and texted her

then my house filled with sweet music

the music of my sweet daughter's voice

'Smile, You've Got Mail'

over and over again


she said that she feels 'ok' and that she's on the mask

-that's the 'trach mask' that they are using to wean her

-having her breath on her own, without the ventilator

it's work, -work that must be done

she told me she's watching tv and 'chillin''

i told her about tonight's Big Event here in Long Beach

she said 'cool'

what else do teenagers say?


so, great

who needs nurses for details

when you've got a cell phone and a sweetheart

back-off, baby!

this afternoon's report was good

her nurse said that she's

back-off of 24/7 dialysis

back-off the dual ventilator

back-off heavy sedation

back-off heavy pain medication

yeah!

and the x-ray of her problem

-the air trapped around her heart

'seems' to be dissapating (more)


so with this morning's texts

and this afternoon's report

..we can go into her big fundraiser tomorrow night

with a little more hope

and

as you know

hope is what we have

what a wonderful age we're in

i was awakened this morning at 4am by acacia's voice

"Smile, You've Got Mail!"

-that's the sound my phone makes when i get a text

and (praise god) there was the message

'morning'

-from a medically induced coma to a text on a cell phone

ain't life great?

we text ed back and forth

she said she felt fine, but can't handle the feeding tube

i told her 'ya gotta eat'

i asked if she's getting skinny, she said 'yeahhh'

ya see, like her father (and his cars)

-she's always had trouble with a spare tire


so, (for this morning) 'she's wide awake'

i told her i loved her

and she did the same

-that's all i need


the wheel goes round and round

and (for right now anyway) we're at the top!

a li'l better

nothing's really different

i just called and everything's the same

other than her stomach feels a li'l better

and she's 'not so sedated' -yet comfortable


they still don't know what's going on with her

the nurse said they are just waiting to see if

the new lungs kick-in and start working by themselves


that sounds to me like it's time for more prayers

'resting comfortably'

i think when they don't wanna talk to me

or they don't know what's going on

they tell me that she's 'resting comfortably'

this nurse this morning had no idea how to answer

my questions about acacia

she just keep saying 'i don't know'

and 'she's resting comfortably'

what they've done, (i'm fearing)

is just knock her out again

last night she was in distress and 'comfortable'

they don't know why she's having so many different problems


just

'her numbers are normal and she's resting comfortably'


i guess i should be thankful for that

i keep reminding myself -she's out of my hands

-she's in god almighty's hands

i'm really thankful for that


Anonymous has left a new comment on your post

I will lift up my eyes to the mountains; from whence shall my help come?
My help comes from the Lord who made heaven and earth.
He will not allow [her] foot to slip;
He who keeps [her] will not slumber.
Behold, He who keeps [Acacia] will neither slumber or sleep.