moist heat/pharmacists

June 8, 2000

- the moist heat lasted 10 minutes, we were both on each side of

macey the entire time and preoccupied her with a cassette tape and music.

she had more sensory issues with it than anything. she didn't like the

weight of it, she didn't' like the new texture of the towels, she didn't

like the smell of the damp warm water moist heat pads. but sooner or later

(like in the last 30 seconds of it) she calmed down. she promises next time

she won't be so bad about the whole thing and all in all it did some good

for her for the next two days or so. tonight she is stiff again but not

swollen. She had a CT this morning of her sinuses and sees the ENT tomorrow

morning. there is a chance that she will be getting an implanted iv line

(central line) and will start iv antibiotics. for the sinus headache they

gave her Tylenol #2. tonight when she took it for the sinus headache (which

was ultra bad tonight) it helped her knees also. so the Naproxen seems to

be helping with the swelling but not the stiffness or pain. the Tylenol #2

helped with those but the ped doesn't want her so drugged up that the rheumy

can't evaluate her. She sees him on June 28th unless something opens up

before then.

Regarding the rice, we've done that for months in ot for a sensory

restimulation thing but never thought to warm it up which might help her

hands in the process. what a good idea.

Macey's pharmacist has caught several med interaction problems and on one

occasion has called the doctor and told them that they could not in good

faith fill the med. the doctor changed the prescription but was a bit

miffed. We've always considered macey's public and hospital pharmacists a

part of her health care team. at the hospital she has a wonderful young man

who is a pediatric pharmacist and only works peds. he's been a great

resource. the one we use at our local CVS has just transferred on Monday

and we've yet to refill anything. we would always wait to refill stuff on

the days when we knew he was scheduled. There's another one there that's

aware of all of macey's meds (13-14/day) and her needs so maybe it won't be

so awful.

Ursula Holleman

Macey and 's mom

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