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

wasting away?

she text me and said she's down to 80lbs.

!!!

i knew it

why can't they give her enough nutrition?


she said that she's likes her new room and nurses

i'm not quite sure where she is (what kinda set-up)

she doesn't feel good today

i told her to just rest...

CarePages Update

FROM ACACIA'S MOM...

Acacia moved upstairs to 9D late last night.
The room is like a closet and the nurse wasn't thrilled to see the cot.
Acacia had a good night's sleep.
She still can not eat or talk, so the phone is disconnected in the room,
it is one too distracting, and two really stressful as she can't talk and then she gets sad/upset.
The internet is down again at the hospital but keep the messages flowing as i will print them here at the hotel and bring them into her.

So this is the start of the next chapter!

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.