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