Kathleen did about 45 minutes of mat work on her stomach and elbows today. She was very
groggy and found it hard to wake up for a brief speech
therapy session.
Kathleen has a small cut on her tailbone which can lead to bigger problems
(http://www.umm.edu/dermatology-info/bedsore.htm).
The wound is being treated.
Kathleen has been determined to improve from a 7 to a 13 on the Wessex Head
Injury Matrix
(WHIM- a more incremental measure of a patients improvement
after severe head injury)
http://www.tvtc.com/publications/TestProd.asp?TestID=28
The Median Nerve Stimulator which had been placed on Kathleen's left hand during her right hand
cast burned out yesterday. The family hopes for a
replacement Monday.
The Davey family would like to thank the nurses on the sixth floor at Kaiser
(Step Down Unit) for their
kindness to Kathleen during this ordeal.
Kathleen stood for her longest period yet on Friday (about 45 minutes) on Friday. She held
her head up about 60% of the time and the therapist said she cracked a 1/2 smile.
Here is a video (in Quicktime format) of Kathleen on the tilt table Thursday. Here, she is showing
some of her head control which is improving as she gets stronger. The hope is that these connections
help rebuild other lost connections.
Kathleen had her right wrist casted today
She had the median nerve stimulator moved to her left side, which would
theoretically
stimulate her right brain more ( The RIGHT brain houses visual images, emotions, music,
physical manipulation and our perception of space and the
world around us, our
connection to nature). Kathleen is a southpaw, which in some ways might
make her more
right brain –even though she loves to read. During
most of the MNS today she had music going.
Kathleen stood for 30 minutes today.
Kathleen had her new cast cut off in the morning.
Kathleen's food was put on hold for 2 days to evaluate her feeding after
yesterday
(it was unclear whether a brief O2 saturation decline 20 seconds to 87) was related to
her food intake.
Kathleen had a really good and long session on an exercise mat where she was on
her
stomach and elbows. For most of the time she held her head up and later got an even better
stretch on some mats.
Here is a
letter to Kathleen from Bean's friend and Kim's fiancee Alvaro.
Kathleen did not seem to feel well today and ran a fever of up to 100.3
Kathleen got a new cast on her left hand which stretched her out considerably.
Kathleen held her head up in her wheelchair for much of her 1 1/2 hours in it.
In her second chair run for the day she grew very tired after 1 hour, but did
eat over
two tablespoons of raspberry yogurt
Kathleen sat on the edge of the bed with Mike and her brother Joe for almost 20
minutes.
New promising news from Stanford. Unfortunately the research is still in its early stages
and as of yet Stanford doctors have rejected requests for a "compassionate protocol" for
Kathleen. http://www.eurekalert.org/pub_releases/2004-07/sumc-scf072204.php
Kathleen did not as it turns out get a new roommate.
Kathleen got up on the tilt table for 30 minutes and held her head the entire time.
She also ate more yogurt (this time a flavor she likes -
blueberry) than
she has since the injury.
Kathleen sat in the wheelchair for nearly 2 1/2 hours much of the time with the
dreaded helmet – which incidentally fit better today.
Kathleen had her 2nd left wrist cast removed. She is scheduled to do her right wrist
on Thursday
Kathleen is scheduled to have a new roommate starting today.
There are some holes to fill-in for visitor’s spots. If anybody can help please contact
Cece Here is the schedule.
Bean sat well for an hour in the wheelchair with her helmet device, and for another
45 minutes with her back support
Bean sat on the edge of the bed for 20 minutes and held her head up for about
2/3rds
of the session before becoming exhausted and falling asleep.
In the evening she was in the wheelchair again, this time in the helmet for
just 20 minutes and another hour after that without the helmet before tiring
significantly
Kathleen threw up about half of her late night feeding
tonight.
The Davey and McGrath families will meet soon to discuss Kathleen's short
and long term options to give her a chance to recover. Valley Med's JTR
program is everything they hoped for, but at nearly $4000 a
day,
her stay will unfortunately have to be limited.
Here is a letter from Cece.
This week’s Visitation Schedule is posted above.
There are some holes to fill-in for visitor’s spots. If anybody can help please contact
Cece Here is the schedule.
Today marks six months. This has been the hardest
challenge you and our entire family has ever faced. I
cry daily for the time you are missing with your girls
and our time together. As our family grieves, please
know that we will never lose our faith in you and our
hope for a miracle. The Talmud says "every blade of
grass has an angel that bends over it and whispers, grow,
grow."
You have thousands of people praying for you and every
nigh two angels that you know personally (and pictures of
them above your bed and around your room) yelling
loudly, "GROW, GROW." Come back my love. Bean, we are
your partners on this long journey though all the ups
and downs and will continue to be there to protect and
stand
by you.
Kathleen received a new median nerve stimulator.
Kathleen lay on her stomach propped up on her elbows today for the first time in six months.
Kathleen made great progress on the cast on her left wrist. She gained nearly 50 degrees
in mobility without one red mark.
The therapist continues to remark about her tremendous skin.
Her wrist was cast again to get a model which she can
continue to use.
Kathleen stood for 30 minutes in the standing frame and grudgingly ate vanilla
yogurt and applesauce (not
2 of her favorites)
Valley Med is upping Kathleen’s dose of Sinemet
Kathleen sat on the edge of the bed for 20 minutes working on trunk & head
control with help from
Foothill mother Lisa Moriarity. Kathleen is showing better head control (but
not sure if it’s from the Sinemet)
Kathleen's family and doctors are considering administration of EPO
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15178821&dopt=Abstract
to promote Kathleen's neurogenesis
Kathleen sat on the edge of the bed for some time and then went in her wheel chair
with the new helmet for 90 minutes afterwards.
Kathleen ate ice chips and chocolate pudding without problems during speech
therapy
and followed two pictures a few inches.
Kathleen was fitted for more permanent leg braces (AFOs).
Here is next week’s OT/PT Schedule:
M 9-10 OT/PT
1:30-2:30 OT
T 8-8:30 OT
12:30-1:30 PT
1- OT
W 8:15-9 OT
12:30-1:30 OT
2:30-3:30 PT
Th 8:15-9 OT
1:30-2:30 PT/OT
F 8-9 OT
11:30-12 PT
1:30-2:30 PT/OT
Kathleen was in the wheelchair for 2 and 1/2 hours this morning one and a half
of those hours were with the new helmet. She was put right
back to bed and feel
alseep right away.
Kathleen stood for 30 minutes and ten of those minutes she held her head
up. She fell
right back to sleep after she was put in bed.
She was in the wheelchair for 1 hour in the afternoon and again fell asleep as
soon as she went back to bed.
Kathleen stood in the standing frame for 30 minutes today
and seemed fine.
She spent 2hrs 20 minutes in a wheelchair
Kathleen got a wrist cast (after a couple of nasty shots to numb the area) on
her left wrist.
Mike hurt his right wrist playing basketball in sympathy :)
Mike fed Kathleen a little chocolate pudding and a few ice chips
Kathleen had her second cast off yesterday on her right foot. This cast helped her
achieve neutral position so her foot can go down flat. In the short term her cast, now cut
in two, will be wrapped in an Ace bandage and used as a
brace.
Kathleen's friend, Tom, brought a new helmet and head holding device to help
her be more
comfortable and be better able to practice holding up her head while she is in the wheelchair.
She was up twice yesterday- the first time for an hour and
the second time for
2hrs 20 minutes.
Kathleen had a day off from therapy, but a steady stream of
visitors.
She went outside for an hour and enjoyed the evening, but still hates her helmet
which she again tried, without success today, to pull out of.
Here is this week’s OT/PT Schedule:
Mon:
8:15-9 OT
1:30 OT
2-3: Taking off Cast and putting on new one if necessary
Tues:
9-10 Cast on left wrist
12:30-1:30 OT/PT
Wed:
8:15-9 OT
12:30-1:30 OT/PT
Thu: 8:15-9
1:30-2:30 OT/PT
Fri: 9:00-10:00OT/PT
10:30-11:30 OT/PT
ST: M-F TBA
Bean had ice chips with blue dye today and wasn’t exactly fond of them. .She turned
her head away and opened her mouth very little. Yet when she coughed secretions
out of her trach there was no blue dye which is a good sign
Kathleen had a good occupational therapy/physical therapy session today where
she stretched, sat
on the edge of a bench etc. She then was put in her wheel chair with the helmet to practice holding
her head. About 10 minutes in she turned her head quickly and ripped off the straps. It appears
Kathleen will need a new "fitting."
Kathleen twice got up in the wheelchair with the helmet brace today. Once for two
hours and a second time for just over 90 minutes. After her second session she was
sound asleep for hours.
Kathleen chewed and swallowed several bites of strawberry yogurt and ice chips.
Therapy schedule for Saturday is Speech Therapy 11:30-12noon OT/PT 1-2pm
Kathleen had her right foot re-casted. It will probably be removed on Monday.
On Tue. she will get her wrist casted.
For those who are curious as to what Sinemet does, here is a brief description:
-The combination of levodopa and carbidopa (Sinemet)
is used to treat the symptoms of Parkinson's disease
including tremors (shaking), stiffness, and slowness
of movement. Sinemet also may improve your gait
(walk), posture, swallowing, speech, handwriting,
vigor, alertness, and sense of well-being-
Another article showcasing cutting-edge stem cell research
Kathleen
again got in the chair with a helmet for nearly 2 hours this afternooon
Kathleen's trial of Amantadine, the drug designed to combat
the flu, which has shown promise in awakening
patients in comas and to reduce spacticity for Parkinson's patients ended last
Saturday. She has been given a
week off to get a baseline for the difference and will try a new Parkinson's drug Sinemet today.
Here is a promising article on bone marrow stem cells.
Here are some links to videos that aired on C-SPAN concerning where scientists are at with stem cell research.
Correction: Yesterday Kathleen did NOT have surgery on her foot but did have her foot/lower leg casted.
Kathleen was in her wheelchair for 90 minutes this morning.
Kathleen enjoyed cranial sacral therapy this morning, to be holding on with her hands for the first time,
with purpose, during her hand massage
Kathleen spent quite some time in the gym sitting with her
back against a ball practicing head control and
eating ice chips.
X-Rays on Kathleen's lungs were negative for pneumonia.
According to Kathleen's therapist she is a 2 on the Rancho Los Amigos Scale but has lately done some things
(such as eating) which reflect some higher skills.
Note: For those who delivered meals and want to pick up their dishes, they will be dropped off at Julie Grenier’s
room at Saratoga High school this week.
Kathleen had her right foot/lower leg was casted and did NOT have surgery on it. It will come off in a few days.
The speech Therapist gave Kathleen applesauce with blue dye to see if any food leaked into
her lung/respiratory area. To their surprise, Kathleen chewed the food and swallowed without any food reaching her
lungs. The speech therapist plans to try chocolate pudding on Tuesday.
Kathleen had X-rays this afternoon of her chest area to see if she shows any signs of aspiration pneumonia.
She had a high heart rate today.
Kathleen seems more responsive today.
She seemed a little warm today and she ran a low-grade fever of 100.7
The new Visitor’s Schedule is posted above
Kathleen had no scheduled therapy today.
Kathleen threw up this morning after again being given two
cans of food. She has been switched to 1 can every 4
hours instead of 2 cans every 8 hours.
Kathleen has shown significantly more movement in her left hand and fingers (particularly her thumb).
Kathleen spent 95 minutes in the wheelchair – a personal record for her. She was very
tired afterwards and bed promptly went to sleep.
Here is a promising article on stem cell research.
Kathleen threw up again at 6am this morning. Doctors plan to readjust her food intake during eating cycles.
Kathleen had 15 minute physical therapy session at 10am
Had a nice 30 minute speech-therapy session eating ice chips and trying to vocalize sounds such as sighs and groans.
She received 5 minute range of motion exercises.
She sat on the edge of the bed for 15 minutes and sat on the patio in the sun
for 90 minutes.
She enjoyed the kids running around her
Here is the Physical/Occupational/Speech Therapy Schedule for the next week.
Kathleen had a rough evening. She had dinner (through her feeding tube) and then had another helping of juice
and threw up. It was clearly too much for her to
handle at once.
Kathleen stayed awake all day and fell asleep in the evening. Perhaps she
is finally
getting on her day/night cycles.
Kathleen has had a lot of secretions today but is working hard to cough them up. At 10 a.m
she had an incident where she coughed up some secretions that made her gag and vomit her breakfast.
She is ok. This is very dangerous not only in that she can choke but it can also lead to pneumonia
because liquids can end up in her lungs.
Here is the schedule for today:
8:00-9:00 (Bean had her 1st shower since January. She was tense at start but is relaxing now)
10:30- 11:00 Speech Therapy
11:00-11:30 Physical Therapy
11:30-12:00 Occupational therapy (she’ll be standing)
12:15-12:45 PT
1:30-2:00 ST
Median Nerve Stimulation all Day
Kathleen seemed agitated at times today, in the middle of the day by the nerve stimulation in particular.
Because of this, she didn’t go outside today. In the early
evening she again seemed fine
Kathleen got a new trach today.
Her blood pressure medication was again reduced on a trial basis from 50 to 25. It was 75 ten days ago.
Kathleen bit her lip.
Rachie and Samie again visited mommy and Samie read "the Dumb
Bunnies" to all in the room
Kathleen was introduced to the team today, given measurements on how much range
of motion
she has lost while at Kaiser, stood up for a brief moment and given range of exercises.
She got in a wheelchair and went outside for 1 1/4
hours.
Kathleen had her catheter pulled and is now on bolus feeding (3 x a day) rather
than continuous.
Here are B-day cards to Kathleen from Rachie and Samie.
Here is a B-Day letter to Bean from Michelle. (it’s Michelle’s b-day today!)
We’d like to make another request for people to calling
their congressmember to support the NIH budget
for regenerative medicine.
Find your Representative here.
Find your Senator here.
Also, recent news has shown that a good number of trials that are supposed to be reported to the
government’s database are not. Here is the article.
To Valley Medical:
Kathleen was stressed out during the ride over but the stress evaporated when
she got down from the ambulance and into the sun. The EMT team let her stay
there for a few moments because she liked it so much
Initial evaluations from Kathleen's doctors and PT/OT:
Everyone seemed very nice and determined to help her become as functional as
possible and hopefully "wake up" her
cognitive functions. New drug and care ideas
were discussed along with financing her stay at Valley Medical.
Samie and Rachie came to visit and sung her Happy Birthday in the hospital and
again
later on the phone..
Kathleen received many kind birthday cards including a visit and nice present
from Jeanne
who has a son going through a hauntingly similar tragedy and a card from Doctor Cooper,
the MNS doctor who has been helping the family
http://www.bluemountain.com/view.pd?i=100257649&m=9508&rr=y&source=bma999
Therapy starts at 8:30AM Wednesday.
At Kaiser:
Happy B-Day Kathleen!
Kathleen is moving to Valley Medical of Santa Clara today at 1:15 p.m. She will be in room 15B on the Second Floor
Brain Trauma Rehab wing.
Kathleen has had a quiet day so far. Sleeping well and very comfortable and her body is very loose and relaxed.
Kathleen Will be moving tomorrow (Tue.) to Valley Med to join the Journey to Recovery Program.
Details will be posted as they come in (room #, floor, etc).
Kathleen again appeared stressed out today. Mike
thought she had another bladder infection so a culture
was taken and extra cranberry juice was given. Other thoughts were that
she is stressed about the upcoming
move and the boxing up of months of equipment for her.
Kathleen's eyes were very reactive to people in the room today frequently
moving to sides of the bed and
locations where people were standing though she still didn’t track objects
The new visitor’s schedule is listed above.
Kathleen did not sleep today between Noon and 1am (afterwards?) and appeared
uncomfortable and jumpy, especially to the touch. Her
catheter was
checked and it had no problems
Kathleen had her first fever (though slight 99.3) in some time today.
She was in the wheelchair outside for just 1hr and 20minutes
before tiring.
Kathleen’s breathing and heart rate were up today, though her blood
pressure was normal.
She responded much more to the median nerve stimulator by
jerking her hand back when it went
off.
Samie and Rachie came by and wished Mom a happy 4th of July and lay down in bed
with her for awhile.
Kathleen sat in her cardiac chair for an hour then her OT Michelle arrived
and gave her a rigorous OT session sitting on the edge of
the bed for 20
minutes, and then sitting in her wheelchair for 2 hours. While in the
wheelchair
she received help brushing her teeth.
Kathleen received a late night visit from Samie (midnight) who was returning
from a wedding with Mike in San Francisco. Samie told
her mommy that they
prayed for Kathleen "Lord hear our prayer" during the wedding mass
and Kathleen's
stressed breathing stopped and she calmed down and went to
sleep shortly
thereafter.
The plans are still for Kathleen to move to SCVMC's Journey
to Recovery Program
on her birthday, Tuesday
The tentative move time is Tuesday at 2pm
Kathleen had cranial sacral therapy from Tim today and really calmed
down (she was stressed in the morning) then she sat on the edge of
the bed for nearly 1/2 hour with support from Lisa and Mike.
Kathleen’s blood pressure is fine so far with the reduction in medicine
119/70 with Metropolol down to 25mg
Mike and Joe visited the Journey to Recovery program at Valley Med today
and were impressed by the organization and the staff.
The family will have to find a financial way to keep Kathleen there as long as
possible if she continues to improve.
The family is determined to find benefit from the experience.
Kathleen seemed agitated at times today, in the middle of
the day by the nerve stimulation in particular. Because of this, she
didn’t go outside today.
By early evening Kathleen again seemed fine
Her blood pressure medication again reduced on a trial basis from 50 to 25.
It was 75 ten days ago.
Rachie and Samie again visited mommy and Samie read
"the Dumb Bunnies" to all in the room
