she talks!!!!

there's so much good news today

i don't even know where to begin

it began when she texted me at 5:51 am

-to tell me it was a good day and that she can now shower (whew)

and then went on to tell me all the food she's been eating

cheeseburgers and pizza and for breakfast yesterday she had

a turkey dinner!!


they are gonna do surgery wednesday on her vocal cords

-to try and repair the paralysis on the left side


then my cell phone rang...

IT WAS HER!

TALKING!!

-so sweet and soft, she covers the hole in her trach tube

and it works, it was hard for her to talk

i was so overcome with emotion, that i could hardly talk

we talked for a good while, she got tired

it was like i was dreaming, i couldn't believe my ears


what a miracle this day has been

it's been seven weeks since i've heard her voice

i'm so happy and we all are so blessed!

(Great) CarePage Update

FROM HER MOM...

Hi Everyone,
The doctor came in to see us around 9 PM last night.
I asked if we could give Acacia the nausea and pain medicine
around the clock so that she doesn't wake up with a problem,
and stop the tube feed that she was on as I thought that was the original one in ICU that was giving her the diareheria.
He agreed and today Acacia woke up feeling more like herself.
She walked the length of the floor twice!
She hasn't had any more diareheria and her nausea and pain are much better.
She has started eating, and her appetite seems to be improving.
She is 96 pounds.
A little pixie, but her smile is back.
The doctor came by this morning and I asked if I could take her in a wheel chair
off the floor just to give her something different.
He let me take her with oxygen, she was so happy.
I hope Acacia continues to progress and get stronger,
I know they keep reminding us that she may backslide a bit,
but it was just great to have Acacia back.

THANKFULNESS

i heard from her this morning

we did a little texting

(i love it when we do a little texting)

she said that the drugs she's on are

making her hair and nails really grow

also that they're doing the swallow tests

and that she can't keep anything down

it goes in and then come right back out

we decided that her stomach needs to get used to food again

-but what do we know...


BACK TO THANKSGIVING AND BEING THANKFUL...

thankfulness reinforces my hope and my faith

when i remember and thank god for all he's already done

my trust in him gets stronger and

i look all the more forward

-and can't wait to see

what he will do next

nothing

i called back to pittsburgh

4 times

got nowhere

the phones just keep ringing and ringing

-from one to another to another

'please hold on'

for over 25 minutes

that's enough (for now)

simply 'hurting'

lots of pain and just being uncomfortable

they, now really don't know why she had that bad rash

they are 'adjusting' her medication

-seeing what works best for her (practicing medicine)

she is sitting-up in her chair and watching tv

they tried a 'swallow test'

and do another, more extensive one tomorrow

so

again

one day at a time...

CarePages Update

FROM HER MOM...

Monday: our nurse today is awesome. I asked her if a bigger room opens up could we move, and she made it happen! We have a much bigger room, so now all the machines and my cot fit in just fine, today there wasn't enough room for me to stay in the room when she had dialysis as the two additional machines and nurse took up all available space. I was able to go for a walk and have lunch but then the nurse called that Acacia was really upset that I wasn't there.

The nurse practitioner in charge of this floor is really on the ball.
She and our nurse went through all of Acacia's medicines and saw that one med dosage was probably way too high. They took blood to check the level,
and will adjust accordingly. This drug is an anti rejection drug that can make you really nauseous so maybe that is why she feels so lousy.
Acacia started out great today, but then the therapists walked her
and that wore her out. Then she had 3 hours of dialysis which really wears her out. So hopefully tomorrow will be a better day.

The primary nurse on the floor came in and said her job is to teach Acacia all the pills and when to take what. I asked her how many pills and she said around a dozen, five that she will have for the rest of her life a few for a few months.
Acacia and I smiled and I told her that would be a piece of cake after the last five years with the Flolan, pills we can handle.
She was really impressed to hear how responsible Acacia has been
-taking care of her pump, making the Flolan etc.

access denied

acacia is now in a heart/lung transplant unit

i'm having a little trouble getting any information

about the condition of my daughter

the three times i called back to pittsburgh

this is what happened

1) was told they can't not give me any information

2) was transferred directly to acacia's room

(where i know the phone has been unplugged for acacia)

3) she put me on hold forever


i'm looking into the matter

through the patient administrator