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Amber-
Mom and I had a good day. She stood on the standing frame for 32
minutes. This is great. Before that she stood on her own for a few
seconds 3 times. It was when we were doing sit to stand from the chair to
the mat.
October 29, 2006
Amber-
It is dad’s birthday and we had a cake for him. Dad asked mom is she
could see the cake and candles, she shook her head yes very clearly. I
think she really enjoyed herself like we did.
October 25, 2006
Amber-
Today was great. Mom was calm and responsive in a smooth way. I really
enjoyed the day with her. We did sit to stand 8 times and only one time
did she not help as much. 2 of those times I let go for a bit and she
pushed to stand. We did sitting balance 3 times today and she held her
head up straight. She also held her head up high for 25 minutes on the
standing frame. Overall a wonderful day.
October 20, 2006
Amber-
Mom had a full day. She had a mammogram and a bone density test. In
the shower tonight she helped rub in the shampoo on her head and the
face wash. She reached her right hand up on her own will. Great job
October 18, 2006
Amber-
Mom was so relaxed this morning. She talked with me and also so in front
of Dee. She did not talk (mouthed) in speech class, but she did have good
eye control and was very calm. Two times mom did sitting balance with
me today and she did a good job. One time while sitting she touched my
face and then my eye and right after touched her eye. I asked if
something hurt in her eye she shook her head yes. I asked if she wanted
some eye drops she shook her head yes again. We fixed that fast. Later
on she covered her head up with a blanket on her own like old times. I
asked if it relaxed her she shook her head yes. Earlier today Dee had her
pick up empty balloons and put them on the table. This is great, because
mom is interacting with someone new. Dee has no idea what a big deal
this is, mom working with her. Thanks a lot Dee.
October 17, 2006
Jerrall-
Last night Debbie finally went to sleep a round 1:30 am. I changed her
depends at 3:30 and Deb never woke up. But at 4 am Deb was calm with
her eyes open and her hearth rate in the upper 80’s and ready to start
her day. So we got up ate and normal meds and started are day. At 8 am
I gave Deb a 10 mg Ambien I think it is time to try with therapy.
PT Brian came at 2 pm and worked on the screen porch. Then we went
inside to the black mat and Brian could not believe Debs setting balance.
Debbie was even holding her right out to help balance on the mat. I waited
just until Brian was ready to go and let him know about the Ambien. Brian
said we need to do this again the Ambien did make a difference.
Also I want everyone to know we met a nice lady named Dee. She read to
Debbie for an hour and a half while I ate lunch. Thank you.
October 16, 2006
Amber-
Mom did better on her sitting balance today. She had good eye control
on pictures with speech class. We cut a long piece of poster board to
stick the pictures on so she could look up or down, clearly.
October 15, 2006
Jerrall-
I thought today was a great day! With Krystal back at school. The house
was vary quite. Amber had some work to day. With both of the girls gone
I feel like we are in our litter world. Today was another Ambien trail. After
4 hours, tracking was better, and is easier too follow commands. But
mainly no more tremors anywhere accept mouth. THIS med must do
something.
I took Debbie and Krystal to several stores today. We got the needed
pillows, and pillow cases, 4 Christmas cookies candles and warming plates
for each one.
This is one of Debbie’s favorite smells.
October 14, 2006
Jerrall-
Debbie slept great last night but it was 2 am until 9:30 am and I could of
used a couple more hours myself LOL. Today was Saturday but it
seamed like Sunday. Krystal slept in I could tell she was glad to be in her
own bed and have her own bathroom. Between working with Deb I grilled
a steak, beans, and eggs for Krystal breakfast like I used to do on
Sundays for Krystal. Krystal had some alone time with her mom they both
needed. The three of us did the standing frame for 25 minutes and
Krystal even waxed Debbie’s face and eyebrows.
Debbie was not with us much today and did not even know who I was. It is
a funny feeling when Deb gives a huge head shake no to questions like
who am I.
What I have noticed in the last two months since Deb has been home from
the hospital is the tremors are getting better with even less meds and the
drug withdrawal is getting better. Both are tremors but withdrawal Deb
shakes at times and also rotates her right wrist. Debbie is going to sleep
around 2 am but is getting 5 to at least 7 hours at night. Some nights Deb
holds her potty until morning and bowel movements are better than before
being sick. With the breathing treatments before bed, Deb has not
needed suction at night but a couple of times. Debbie is still not with us
every day but more days than not.
Since we have been using Ambien, stats are the same and it does not
make Deb tired but instead increases alertness, improves tracking but
most of all Debbie has more normal control of her muscles. I have been
doing test on days without therapy, but next week I will do test with therapy
but not tell them until it is over. I can get their true opinion. I do not think
Ambien is something you would take every day, but it gives me a new way
to think about a brain injury.
This is a sample of Debbie weekend day:
9:30 am wake up and stretch this morning not to tight or jumping
10:30 am get dressed and get in her wheelchair
11 am eat and normal meds and up in chair, Deb wanting to keep
right leg crossed
11-12 rest in chair and listen to riki music
Noon I gave complete facial
1 pm lay on mat and have some alone time
2 pm went potty on mat changed clothes
2:15 pm get up in chair and eat regular meds
2:30 pm watch movie calm except right pectal muscle
4:30 pm rest mat
5 pm stand on standing frame for 25 minutes
6 pm ate regular meds and watch TV
7 pm right tremor getting worse unless I talk to Deb this is some thing
Deb has to learn to control
8:30 pm potty change clothes again
10 pm stretch on mat before bed
11 pm got ready for bed
12 am cough had to suction
1 am a sleep
Also so today I got all the wash done folded and put up
Too long of day but good day Deb at peace all day
October 13, 2006
Jerrall-
Krystal has fall break Friday until Tuesday and came home to help me.
Amber has fall break and left not thinking how I am going to go with out
sleep for 4 days. Alone it is so hard to get food at the store and push
Debbie at the same time. Get meds at the pharmacy or do things regular
people take for granted. I know both of the girls are tired of this so I am
going to plan better to be 3 people at the same time.
Debbie only had speech today and the highlight of our day was when
speech asked if Deb and I have been practicing passing the Popsicle stick
to each other. I told her we have not had any extra time and I put the stick
in my mouth and tried to pass it to Debbie and Deb took her right hand
and got the stick from my mouth and threw it across the room. Speech
laughed so hard but she said she needed to see that Debbie was able to
make decisions on her own.
Tonight I took Debbie and Krystal to a shoe store where Debbie shopped
for years. I think all women have at least 50 pair of shoes LOL. But
Krystal needed some warm dry shoes to wear at college between classes
when it is wet outside so she is not sick all winter. While Krystal looked
Debbie and I looked and talked a lot. Debbie knew who I was and she was
but did not remember the shoes at all. I wonder the more Debbie wakes
up how much memory issues Deb will have.
It was 2 am before I had every thing done so I could put Debbie to bed. It
looked like Deb was a sleep before I finished getting her braces on. At 3:
30 am I changed Deb’s depends and still Deb did not wake up.
October 12, 2006
Jerrall-
It is 1 am on the 13 and I still have not made my notes for the 12th. It has
been 23 hours since I have had more than two hours sleep and I still can
not go to sleep because Debbie is not a sleep yet and is panting for each
breath. Debs oxy stats are 99% on her own and her pulse is a little lower
than normal at 71 instead of 78. After an hour of this Deb must be talking
to me by her breath pattern. I put water in her mouth did oral care and
got up some good secretions. Once Debbie got what she wanted Debs
breath pattern are more normal. With this brain injury I am all ways having
to think out side of the box. After today I don’t know what I would do with
out Debbie. It is hard to believe just 2 months ago we were faced with a
do not resuscitate decision. We all need to be thankful for this moment we
have right now.
Deb was a wake a couple of times last night so went she slept in until11am
so I was hoping today would be a great day for Debbie. If OT and PT was
not here today to help with Debbie while all of these other supervisors
were here it could have been worse.
Max came today for 9 hours to mount the tracts on the ceiling in the
bathroom, bedroom, and over the tilt table mat. With this portable lift
system Amber will have such an easier moving Debbie around if Debbie is
to sick to help with transfers. Ms. Love you are a true earth angle sent to
Debbie.
Since Debbie was so sick and fighting for each breath a lot of people want
to help but do not know how. For 2 months a lady has come in the
mornings and has really been in my way. So when her boss came today I
did not have any complaints but I need help at bed time but instead she
wants to try afternoons. At this point we will try anything. To keep 3 mats
stocked and shower prepped and 2 suction machines cleaned and Debbie’
s bedroom prepped every day. Change and wash sheets, pillow cases
once a week. Wash 3 outfits Deb get wet every day, 6 towels and 5 wash
cloths. Empty 3 trash cans by each mat. All of this is a full time job by its
self and even harder not to disturb therapy sessions. So time will tell
Amber and Krystal used to do all of this before college started.
The formula or food was delivered today 12 days late. Then I had several
phone calls about Debbie’s up come week of tests. When I saw PT come
in the door I said Brian can you put Debbie’s shoe on I was trying to deal
with 3 people at the same time and lost all tract of time.
I noticed about 7 pm when every one was gone and Debbie was watching
TV while I cleaned all the floors Debbie was so calm and glad to have
some alone time.
A lot got done today but too much with Debbie in the house. Monday we
have therapy and a nurse meeting and a case manager meeting at
different times I pray it goes better than today.
October 11, 2006
Jerrall-
Last night Deb had a great bowel movement and shower before we went
to bed. The night went so fast the pulse ox never went off all night long.
Debbie did cough a couple of times and needed her throat cleared but
before any oxygen drop. I changed Deb’s depends with out waking her up
which is great. Debbie slept all night but woke up early at 6:30 am and
with a saliva issue. I know we had to get right up but when we tried we
had to change depends again. So by 7:30 Deb was dressed and ready
for her day. Thank goodness Amber was up so I could get some sleep.
Debbie has been so calm today Debbie must be getting used to the med
changes. Tonight as I set beside Debbie I put my hand out and left her
reach out and hold my hand so I know Debbie is in control of the situation.
We both needed a day like today often.
It told 2 hours to get most of the knots out of Debbie muscles. When we
came up to the bed Debbie knew what we were talking about. Deb looked
right away to the channels on the ceiling. Debbie acts like it is a more
comfortable transfer than before.
Amber-
Mom stood 27 mins today. She held her back straight and her head high,
I have not seen her hold her own so well in a year. We only came down
cause her left ankle was starting to turn. She did well in speech class with
the therapist and myself. Her sitting balance is really getting back to the
way it was. Today when I showed her a picture of herself instead of
pointing to herself she mouthed (me). Yeah, how cool is that??? It was
an exciting day.
October 9, 2006
Amber-
E stem on mom’s left hand was the best I had ever seen. Her hand
opened up great. She seems to be getting stronger with her left fingers
each week, since the meds are less. I feel her push down when we do our
stretches. Mom did great sitting balance today with me and with OT. Mom
went to be last night at 1:30 am and tonight she is falling asleep at the
same time. I wonder if that is her new bed time.
October 6, 2006
Jerrall-
This morning starts at 3 am but at least I did not wake Deb up. At 4 Deb
was awake oxygen level great but pulse around 90. This means pain or
some thing is not right. I get in bed with Deb and try stretching her every
which way. At 4:30 am we get up we have decided it is better for use to
sleep when Deb does and not use meds to make Deb sleep just because
we are all tired. Deb had breakfast at 5 am with regular meds.
We came into the living room and watched 50 first dates. Debbie’s pulse
is now 110 which is an issue. At 8 am Deb went potty and her pulse came
down to 99. Now we will have to see where this goes. Debbie’s feet are
ok but her right hand still has a tremor.
At 8:30 Debbie’s blood pressure was 155/98 with a pulse of 102. Still I am
holding the Propranolol. I feel that Debbie can work this out on her own.
Extra meds in Deb’s case are not the answer. We are still watching the
movie and tremors are getting better.
At 9 am Amber was here to change shifts and just in time. It was a long
night.
I got up at 2:30 pm and Debbie was calm but has not used the restroom
all day. Time for a shift change, this gives me a starting point at least. I
put Deb on the commode for 1/2 hour and we talk about what we are
doing and even massage Deb’s tummy. Deb nods this will not work right
now. I used to ask Deb are you thinking and she would whisper what. I
answered potting and then Deb would go. For the last year this has not
worked. Some messages get through and some do not. But as soon as I
laid Deb down on the mat to get dressed she went potty which is great.
Soon we need to check with the bone Doctor and in two weeks Debbie is
getting a bone density check up so we will go from there.
We spent a couple of hours laying on Deb’s sides and looking out the
window. Really we was doing weight bearing though both shoulders. Now
it is time to get up so I put on a complete outfit Amber got Debbie this
week and WOW!!
It looks like the old Debbie. The pants are corduroy with a zipper and a
snap. The under shirt is thin and light, and the jacket is like a sweater in
the back and different material in the front and has the side pockets Deb
loves.
Debbie is setting up in her wheel chair straight as an arrow neck,
shoulders and even holding her right arm out with no tremor and resting
on her chairs arm rest. Deb is a where of her new out fit and I see what
people say that cloths make the difference.
Debbie had a great day.
Amber-
Mom did not really sleep last night, but she had a good calm day. She
stood on the standing frame for 25 minutes, which is fantastic. When she
and I did the sit to stand to transfer back onto the mat she helped me
stand up. This is the first time she has ever done this, I almost fell over. I
was expecting her to have weight. In the pause of the stand I let her hold
her own. She held herself up for a few seconds. She did this 2 times
today. Later on we did the flash cards and she mouthed them very
clearly. She is getting much more control with her lips. I held up the flash
card that says “hello sunshine”, she smiled immediately. That is what dad
calls her. She had the biggest smile, and then I asked her what it said.
She mouthed it. We went outside for awhile and enjoyed the air. Good
times today.
October 5, 2006
Jerrall-
Ms. Love is an earth angel. Today I installed her portable ceiling lift
above Deb bed. It is one of the best gifts Debbie has ever had. PT Brain
and Deb and I worked with the lift for two hours. The first time we lifted
Deb we could tell she was nervous and must trust us a lot. Ms. Love used
this lift for her husband for the last two years. This gift of love will
increase Debbie’s quality of life several times a day every day. Some one
is really looking out for Debbie.
Today during OT Anne Marie worked on sitting balance. Since Debbie
was sick she has to start all over. Things are getting better but it is one
step at a time.
Before we went to bed last night Deb and I laid on her tilt table and put her
legs on mine. Together we stretched toes, ankles and legs every way
possible. After an hour Deb’s legs were loose in a good way. I laid Debs
legs over mine even farther so I could reach Deb’s neck and arms. It
takes a ½ hour per limb to do a good stretch that will really do some
good. So Bed time came too early and then pasted. But I did have time to
get Deb’s left side arm to stretch to her neck completely. Tomorrow we will
work on the right arm.
October 4, 2006
Amber-
Mom was having a hard time being on today. She was looking good, but
she did not want to communicate. I am sure when she gets back on
schedule she will shock us all. I did enjoy our time together. Later on like
5 ish or so we took mom to get some warm coats. She felt them when we
asked, she was great for then. It seems to me if mom just sleeps when
she wants ( every 3 rd day) if that is how she wants, then she is on
everyday. Even her secretions minimize with less sedating drugs and
working hard. On sluggish days she can not work hard she gets to tired
and then has a saliva issue. Hey after this long we are all figuring it out,
not just mom. Even if making all this work seems hard and up and down,
we are a team we just need to all talk more and learn how to get sleep
even if mom wants to stay up all night and work out. Mom always told me
to be patient and the answers would come. Mom has such a window of
opportunity in front of her. One day she will look back on this and say
what a journey it seems like a dream. I love you mom and I am proud of
all of us.
October 3, 2006
Jerrall-
Debbie had a long night; she did not want to go to sleep until after 1:30
am and needed her mouth cleared all night long. Amber worked with Deb
until 2 am so I could sleep some. From 2 am until 6 am Deb had a salvia
issue. Deb slept until 11:45 am and OT came at noon. Anne Marie asked
Deb to drop the ring with her left thumb and Deb could not get her
muscles to work. Then when asked to do the same thing with her right
thumb Deb would. So we know Debbie is in side there. Today is the first
OT has seen Debbie cry and have such a sad look on her face.
PT Brain came at 2 pm and worked with Debbie on sitting balance. Before
being sick Deb could set on the mat for 45 minutes, today it was a
struggle to set up at all.
Tonight we have a support meeting and I am sorry Sally I do not have
enough energy to take Deb out tonight. Instead we are setting outside
watching the sunset. Debbie appears to be more a wear of her condition
and it is hard for Deb not to jump more around a lot of people but we will
be back soon.
Today is one of the saddest days of my life just to watch Debbie slowly
disappear right in front of my eyes. I know tomorrow will be better and
then to figure the next step.
HARD DAY
Again if not for Amber and Krystal we could not have made it this far.
Debbie was always there for you and now we see what adults you have
become.
October 2, 2006
Amber-
Mom and I looked at the pictures of the family in her talking board. She
mouthed each person’s name and when it came to her picture she pointed
at herself again for the second time this week. It was great. We did the
hand bike for awhile, we had fun. Mom practiced kicking the big ball with
her right foot. I did her left foot for her. We just did all kinds of fun
things. She was so calm all day. She did need to be suctioned 3 times
today, but overall great.
Jerrall-
Amber let me sleep in today and at 3 pm I went to help Krystal with her
dorm room. The house is not the same with Krystal gone where did the
time go.
Tonight when I got home around 9:30 pm Debbie was watching TV tight
fists and rotating right hand. I could by the look in her right eye it was
hard to breathe. At 10 pm Amber asked if it was time for Debbie to go to
bed. I was so mad that Debbie is hurting so bad and there is nothing I can
do about it. Everyday I see Debbie disappearing in front of me. And I
took all this anger out on Amber, which has her life on hold just trying to
help where ever she can.
It is always better not to leave Debbie because when I come back I feel so
guilty that Debbie has no choices in her life and in some way I have let her
down.
HARD DAY
October 1, 2006
Jerrall-
I can not believe it is Sunday again where did the week go. To day with
no therapy I wanted to try Ambien again. Last night Debbie would not go
to sleep until she went potty and I would lie down with her and hold her
hand at 2:30 am and did not wake until 9:30 am when she went potty. All
night Deb held her potty and did not need suction. We got up and got
dressed and by 10:30 am ate and meds and extra Dantrium.
11 am washed face and did eye care
11:30 am Deb’s tremors so bad her wheelchair was shaking
12 pm laid Deb on mat and clean mouth and tremors getting worse
12:30 pm up in chair and tremors better, still stiff and watch TV
12:30 pm I gave Deb 10 mg Ambien and 150 cc water solo so I could see
what one med
Right foot and hand tremor (jerking)
Right tight and pulling at shirt
Deb will not shake my hand when asked
98% oxygen on own, 85 pulse, 120/74 blood pressure
12:45 pm more movement in head and neck
left side still stiff
right side still jerking
98% oxygen, 85 pulse, 124/88 blood pressure
1 pm right and left side still the same
98 %, 86 pulse
1:15 pm right leg better and right hand still jerking
left side not as stiff
97%, 80 pulse, 103/75 blood pressure
1:30 pm left side more normal
right foot calm but drawn
right hand less tremor and control to take off glasses
95 %, 87 pulse, 116/63
jaw less tremor
2 pm both feet normal even let me file toe nail
right hand some control but not on command
98 %, 78 pulse, 118/80
mouth dry but rattle in back of throat
tv off and clean mouth
2:30 pm eat and regular meds
no more rattle in throat
we are at the table but not following commands
right hand still jerking
100 %, 81 pulse
3 pm still setting at table laying back in her wheelchair just relaxing
feet are great
right hand and jaw still jerking
3:30 pm still resting in chair took glass off on command
almost a sleep
99 %, 78 pulse
4 pm a wake at table
4:30 pm right side tremors starting again maybe #1 or need regular
meds
put rings on tree at command
99 %, 79 pulse
lay Deb down on mat
5:30 pm we still are laying on mat looking out window
Deb went #1 and then total calm
Deb help put shirt on
6:00 pm up in chair and watching home video of July 4, 2000
total calm
eat and regular meds
6:30 pm Deb still calm and watching home video
7 pm passed out in wheelchair
96 %, 71 pulse
I laid Deb down on mat for ½ hour but she never went to sleep
8 pm up in chair and oral care
slight tremor starting in right hand and jaw
9 pm right side tremors getting worse either #1 or to long since
meds
10 pm take shower