thank god for texting!

a lot of people don't like this 'texting thing'

it's a life-line for me and my kid

and i just had a wonderful session

she told me all about

-that they're moving her upstairs

-and how happy she is about getting out of CTICU

-and that she got some 'signed' stuff from

the world champion boston red sox players

-and that she's got a smaller trach tube

-and that they're gunna work on helping her talk

(a matter of time)

she sounded great and she also said that

she misses me soooooooooooooooo much


THANK GOD FOR TEXTING

suddenly, cooperative

now, all of a sudden

this nurse wanted to tell me everything

-i couldn't get her off the phone

wonder what's changed


she said acacia's in her chair resting

she's been busy

went for a ride in the wheelchair

went for a walk

had the trach tube replaced with a smaller one

got her 'transfer orders' (she's moving upstairs!)


the nurse said that her rash goes away when they treat it

and that she hasn't been on the ventilator for 'awhile'

at night she's gets assistance with the bipap (creating pressure in lungs)

and all day long, she breaths with her new lungs

-with an oxygen mask (set at the lowest setting)


she's doing good, and has come a long, long way

we'll see what 'upstairs' brings

'i thought something was fishy'

THIS IS WHAT WE'VE BEEN DEALING WITH

me once or twice a day on the phone

and acacia and her mom 24/7

CarePages Update
from acacia's mom

It is unbelievable if you saw her the last two days, you would not think it was the same patient. Acacia developed a very serious allergic reaction to two medicines not interacting well. It actually started at the beginning of the week, and became progressively worse. Each time she would suddenly complain of being on fire, and her chest would hurt and she would be numb all over. I would ask what did you give her for medicines, I think she is having a reaction to something. Each time the nurses would say oh she can't have a reaction now it would of shown up right away. She has been on the same meds since the beginning. I would argue that in Acacia's case she "develops" allergic reactions over time. They would say that is not possible. And it would be dropped.

Yesterday I walked in to find Acacia in the chair all blotchy red, hysterical without noise, writing she felt like she was on fire. She had been calling the nurse with the call button but no one answered. Of course the nurse complained she was overworked with the two patients.. She also had chest pain, I called for the nurse who in a very condescending tone told Acacia "you're fine you are just upset: Well, I told her my daughter does not cry or complain get a doctor, she came back a little while later and said they have other emergencies,,,,
so the next person who walked by I grabbed by her coat, she was shocked and told me she wasn't "on" yet, I told her I didn't care get help NOW, the charge nurse came in and immediately said you're right it is a reaction to something it is definitely not anxiety. Then the doctors showed up and it took them a few hours to figure it out.

'excellent'

i pulled more teeth this morning

with no novocain

i even raised my voice a little

to pry some news outta her nurse

she loosened-up and told me

that she's having an excellent day

she's doing the bipap machine at night (all night)

and is breathing (with the mask) on her own all day!

she's had yet another walk

and is walking great, no huffing OR puffing

she's sitting up in her chair

and looking great (i already knew that)


sooooo

our prayers are being answered

as a direct result of our hope and trust in jesus christ...

'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