phone updates

i called her nurse this morning

she said she's doing good

been off her breathing machine for two hours

and doing OK

going to have a four hour dialysis treatment today


yes i'm back here in long beach


her and her mom thought that she's doing well enough

for me to go home


it was hard for me to leave

but the fact that she has left so many of her machines behind

and that she's doing so much better

and that the nurses say she's doing fantastic

and that she wants to deal with this with her mom

and that her mom is an unbelievable mom and caregiver


i left


i'll get updates all the time

and i'll post new updates when things change


thank you again so much for your concern, love and prayers


may almighty god bless us all

the story remains the same

as far as i can tell

she's doing pretty good

sitting up in her bed

all cleaned-up and as beautiful as ever

blood pressure still moving around

but

maybe the dialysis will correct that

still off and on her breathing tube

but for what this little girl has gone thru

she's doing so good


the nurses have said in the last week

she's doing good

to

she's doing great

to

she's doing fantastic

i'll take


thank you god

and thanks to everyone for all of your prayers

love and support

this is what makes people get better

two purple popsicles

tonight when i got there

things were looking up

she had just finished eating two popsicles


and over in the corner was her dialysis machine


it was turned OFF


she's doing good

still so weak but seems that for right now

it's all systems go

good news from bed #3

her nurse told me that her blood pressure is stabilized

and her heart rate is good or at least understandable

so the doctors have decided to take her OFF the 24 hour dialysis

and just go to every other day for 4 hours at a time, great!


another day and another machine gone


she still is so frail and weak

while i was there a therapist came in and moved her

arms and legs around to keep 'em strong and flexible

she responded well, the therapist seemed happy


she's resting today, or trying to

they come in every few minutes to do something to her

-she's in good hands in more ways than we can know


this was posted by Anonymous (you can post too :)


I would have despiared unless I had believed that I would

see the goodness of the Lord in the land of the living

Wait for the Lord, Be strong and let your heart take courage

Yes, wait for the Lord

Hal and Lulu

sick people at the hospital shouldn't be the nurses

yes, it seems that maybe her nurse gave her something

she's got a fever and her white blood count is high

they don't know what it is

but they're treating her with some antibiotics


her blood pressure is still too high and her heart rate

is between 99 and 109. too high


she went to sleep while i was there

and she didn't tell me to leave

but this morning she's too sick to say or do anyhing


her mom came in to take care of her

she's really upset and has had acacia's main doctor in boston

start to get ON these doctors and nurses here in pittsburgh


she's on continuous dialysis and i think that's what's

happening with her blood pressure and heart rate

ya know, dialysis beats the heck outta you


let's just hope that her infection is nothing (or treated)

and that her kidneys heal and start working right again

ok, it's whine time

she had an OK day

they had problems with her blood pressure

and when they gave her that medication, it went to low

so they had to stop taking out so much fluid

and her mom said, when she was sleeping today her heart rate was too high


up and down, up and down, just like the ride


they gave her a special mattress that fills with air

and moves her around, to move the fluids around

she hates it


so, her mom left for a second to give us some alone time

we got along good, talking about stuff we like

it was difficult for her to make me understand what she's saying

we talked about writing on her phone, then computer, then

how about a pen and some paper? duh

the nurse gave us a clipboard and some paper and a pen

and she wrote

'i want to go to sleep'


that ended my visit

waaaaaaaaaahhhhhh

weaning, not whining

when i went in this morning

there was a big orange sign hanging over her bed

WEANING IN PROGRESS

little by little

they are weaning her off of the breathing machine

an hour here and an hour there

she has to learn to breath on her own


this has been tough on her

she sometimes struggles and it's frustrating and it hurts

she continues to complain about chest pains

the nurses and her doctors and the machines and her mother are checking everything

everything seems OK


she seems so weak and out of it

guess that's to be expected

it's just so hard to see her this way

she does smile when her mom reads her her mail


her heart has been so over worked for so long

it's gonna take awhile to start to feel and work normal, i guess


i'm outta the loop

they don't discuss too much with me

mainly because her mom is right there 'on the case'

also acacia has asked me to leave a couple of times now


no whining