Latest note from Mom re: Andrea

Here I am again. It's been more than a week since I updated you
about Andrea and it has been quite a week! Andrea was discharged
from OHSU on Tuesday and taken by ambulance transport to Mike and
Marilyn's. They had gotten a hospital bed and some other equipment
to help take care of her at home. Unfortunately, some of the
equipment will have to be changed out because it isn't adequate for
her care. Home health will be visiting her; already the nurse has
been out and made an assessment and helped us set up her tube
feeding; a physical therapist has visited and is working to get a
Hoyer lift and a reclining wheelchair that will be safe to use to get
her out of bed. Andrea isn't able to hold herself upright and needs
to have something that will support her head, as well as the rest of
her body. After I left on Friday, the occupational therapist and the
speech therapist also visited. There will be a definite focus on
rehab with her. Not a lot has changed for her, though her speech is
clearer most of the time--especially when she gets angry! We are
walking a fine line of giving adequate medications to keep her
somewhat comfortable, yet not "snow" her! I think we have a ways to
go with that. She is having a lot of pain from her arthritis; it
seems to be much worse when she is immobile--and she has been that!
The meds we have to use are limited: Tylenol, ibuprofen and
oxycodone. We're trying to minimize the oxycodone, but she has had
to have it on a regular basis to minimally control the pain. Marilyn
plans to talk to an accupuncturist in Newberg who is willing to make
home visits. I don't know whether that could help with the pain or
not, but it is worth a try. She is tolerating her tube feeding now
and is receiving it at the rate the doctors felt was necessary. She
has had some "gross" arms movement (i.e. not controlled, but
definitely initiated by her). She still isn't able to do anything
purposeful--like scratch her nose when it itches. (Do you realized
how many times a day we scratch our nose, our cheek, hand--anything?
It's really frustrating for her not to be able to do that!) .Marilyn
called this a.m. to tell me that she had moved her toes this a.m.--
only about a half inch, but it's more than had previously occurred.
She is also able to squeeze your hand when you ask, though the
movement is pretty week at this point. She doesn't sleep through the
night at all, though that is some better. The doctor at OHSU asked
if she would like to try a sleeping pill and Andrea agreed; that has
helped, though she still wakes up several times during the night. We
try to reposition her at least every 4 hours during the night and
more frequently during the day. Mike and Marilyn's chiropractor is
planning to come to the house a couple of times a week to give her
treatments. Something is helping, though we aren't sure what it
is. She was supposed to be readmitted to OHSU on Thursday next week
for another Cytoxan treatment, but Marilyn is trying to get it
coordinated to take her to the hospital in McMinnville instead; that
would minimize the travel for her. That still hadn't been
accomplished as of yesterday.
I'm sorry this is a bit disjointed, but I'm pretty tired tonight--
couldn't get at this any earlier. So, if you have questions, you can
e-mail. I will check before I leave tomorrow and will try to write
another note when I get home on Wednesday.
Love,
Jan