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Amber-
Mom did not go to sleep for one minuet last night. She is very alert today.
At 2:15 pm the physical therapist walked up to her and she continued to
keep eye contact with him. She made the correct facial expressions for
each comment he said. Getting on to the mat she put her right arm around
him with out being told. Once she was on the mat she became this amazing
beam of light. She opened up to the physical therapist for the first time. He
was able to see the Debbie I see when it is just her and I. Debbie was
sitting on her own and correcting her posture as she fell to one side. She
was reaching out her right arm to put it on the mat beside her. She usually
keeps it pulled up extremely tight. The physical therapist put a small
amount of pressure on her right knee to keep it grounded. He only did this
to initiate her response and then she did the rest. Her head was held high
and her focus was spectacular. The physical therapist asked her to look at
me, I was sitting on her left side. She turned her head, as well as her body,
to look me in the eyes. At this point she vocalized a noise. It was unclear,
but loud. I began to get misty eyed. We practice sitting balance for about
45 minuets.
She then laid down on the mat after her session was over. She rested for a
bit.
At 4:15 pm she touched her lips to let me know she wanted me to moisten
her lips with a wash cloth. After I did this I told her I was proud of her and
she smiled. I smiled back and she pointed at my mouth and smiled once
more. She licked her lips and put them together several times. I asked her
what her name was and she mouthed it correctly. I asked what her husband’
s name was, she mouthed his name. I held up my fingers to get her to
count with me. I started with 1 and went to 5 while saying the number. I
said them out loud with a delay allowing her to say or mouth the number
before I did. She was fast to say 2, 3, and 5. I then asked her to repeat the
vowels after me. I said (A) and paused, (E) and paused, as soon the vowel
(I) start to come out of my mouth she already mouthed it, then went with me
in saying (O) and (U). I asked if she wanted to keep lying down, she shook
her head yes.
Although we have not had much sleep, this day has turned out to be one I
would not trade for anything.
4:30 pm, Dad told mom he loved her and she shook her head yes while
mouthing I love you to. I asked her to repeat different words after me. She
tried a few and she put a lot of breath with each one. When I asked her to
say the word (me), she mouthed something and reached out and put her
hand on my check. I asked her to take a deep breath, she took 2 loud
breaths in and out.
At 5 pm I asked her if she felt good, she shook her head yes. I then asked
if she felt bad, she shook her head no. This shows consistency in her
responses. It is much easier for her to shake her head yes verses no. For
us to hold her answers 100 % reliable we ask her no questions to confirm.
January 29, 2006
Jerrall-
Debbie slept good last night. She went to sleep at 1:30 am and woke up
calm at 7:30 am. Sunday is always a quiet slow day. Amber is gone,
Krystal went to a fish fry with Ray. Debbie and I watched 1995 and 1996
home videos. They calmed her down and appeared to spark a lot of
memories. It is also great for me to hear and see her hiking in the
mountains and playing in the snow. At 3:30 pm when I laid her down to rest
on her mat, I saw she was wet. Not from the bathroom, but sweating. The
back of her shirt, left arm were it was resting on the pillow, and the back of
her neck were wet. When Debbie’s last blood work came back about 6
weeks ago it showed she was starting menopause. She has been jerking
her right arm and kicking her right leg since 3 pm. This could be why she is
jumping. I did not ever understand the change of life, so I guess I need to
call her primary care doctor tomorrow. Everything was great until 7 pm
when the saliva issue happened. I laid Debbie on the living room mat to
clean her mouth and cover her up. I put a wash cloth over her eyes and
she began to lie resting so calm.
When Debbie is most with us (extremely alert) her brain seems to be
overloaded. All of this will work itself out in Debbie’s own time, not when any
doctor or I want. I have lived 34 months on faith, sometimes it is best not to
know what tomorrow brings. Just hour by hour.
January 25, 2006
Jerrall-
Debbie went to sleep around 11 pm last night, but woke up at 3:30
am when she went potty. I changed her pants and even laid down
with her, but she would not go back to sleep. Her saliva was good.
She only needed suction a couple of times. At 6 am Amber and I
traded bedrooms. I am so tired. Amber gave Debbie an extra
Klonopin and Propranolol, Debbie never went back to sleep. She
was calm and aware of her surroundings.
All day today Debbie was on and not sleepy. I wish I was not so
tired. The occupational therapist, Susana came at 12:30 am today.
Debbie would not do everything on command, nevertheless Susanne
(occupational therapist) seemed happy with Debbie. Susanne held
Debbie’s left hand where Debbie could see her hand. She asked
Debbie to move her left thumb. She did several times a ¼”, but it was
moving. Today was the best I have ever seen her move her left
thumb. She did not want to pick up any rings or rocks, however would
put the ball in the cup.
Debbie would take off her glasses, she had a little trouble putting
them back on. She would take the wash cloth and wipe off her face
with her right hand. She appeared to only want to do purposeful
movements.
Then most important thing I learned today form Susanne was how to
rewire a brain. Susanne said it is like having a sidewalk, but it is
closer to walk across the yard. If you walk across the yard a few
times nobody can tell, if you walk across the yard everyday the grass
will begin to stop growing. After a while a path will appear and no
grass will grow at all. Repetition – Repetition – Repetition. This is
the first time I got it. THANK YOU SUSANNE, you will never know all I
have learned from you. This afternoon 3 pm, 4 pm, 5 pm Debbie
needed suction and was a little jumpy. At 5 pm when Debbie ate I
have her 20 cc of Benadryl and a ¼ extra of Klonopin. By 6 pm she
was clam except a little tongue movement, her saliva was god. At 5
and 5:30 pm Debbie was grabbing the suction wand and slapping
away my flashlight. She was extra on.
From 6 to 7 pm Debbie watched TV and was calm. 7 to 8 pm I
worked with her left arm, hand, and finger. All of the knots in her left
arm were gone and she was not moving anywhere not even her
tongue. I got her back up in her chair to watch a TV show with Krystal
and I cooked dinner. At the end of the show Debbie really started
jumping. While Krystal and Amber ate I changed mom’s pants. That
is why she was jumping, she was telling us she needed to use the
bathroom.
Tonight during the shower her left eye turned red and her right eye
went under her eyelid.
January 24, 2006
Jerrall-
This morning Debbie woke up at 5 am, we did not get up until 8 am. I
suctioned her several times last night. At 9 am to 12 noon I slept
while Amber stayed with Debbie.
Debbie was the calmest I have ever seen her in a long time. She had
no extra medicine to make her this calm.
Tonight while she was laying on the mat, I showed her flash cards. In
a low voice she said rabbit, 2 syllables.
She got into bed by 10:30 pm, she is really on and aware of her
surroundings.
Last night was long, but today was a good day. Bryan the physical
therapist had a good day with Debbie.
January 23, 2006
Jerrall-
Debbie slept good last night without suction. She only went potty at 3:
30 am. This morning when Debbie become restless I took off her
braces and she went back to sleep. As of noon, Debbie is still
asleep. This is unusual for her to sleep this late. I fed her in bed while
she was asleep. Hopefully she will wake up for the occupational
therapist at 2 pm. Today was the first time we ever cancled therapy.
She did not wake up in time. Last night was the first time to candle a
shower. Debbie’s right eye went up under her eyelid. The neurologist
saw her right eye situation occur during her EEG test last week. He
said it is not seizer activity, that it is more brain injury related activity.
Doctors have no reason doubt that it was seizers. I think the brain is
turning on more and it is like an overload. Tonight we took a shower
and she went to sleep. She jumped extra all day even with all the
extra medicines. It looked more neurological to me than pain.
Debbie might had jumped more, but was on more. When I laid her
down and leaned over to check her mouth she raised her head and
gave me a kiss on my check for no reason. She knows who I am, but
I do not think she remembers what has happen to her. She defiantly
knows something is wrong.
January 22, 2006
Jerrall-
Today we had another good day. She slept last night from midnight
to 5 am. She did not go potty during the night. At 5 am after I
changed her and removed all of her braces she went back to sleep
until 8:30 am. Today was a slow day. We did a lot of stretching on
her legs and trunk. Tonight at 9 pm just before her shower she
started to have a left eye and saliva issue. This is the first time she
has had this problem in days or nights. At 9:30 pm we took her to the
shower and she could not hold her head up. Clear fluid started to run
out of her left nostril. Her right eye went back and her left eye become
red. The shower was cancled. She go into bed instead. Amber
gave her 20 cc of benadryl with her food. (benadryl always drys up
saliva issues) Suction only needed for about an hour. She rested
and got better, she did not fall asleep until midnight.
January 21, 2006
Jerrall-
This morning Debbie woke up at 7 am, after I removed her braces. I
then got in bed with her and she fell back to sleep till 8:30 am. This
last week has been great. Debbie did not wake up jumping or
afraid. Today was a regular day. Krystal and Amber did the standing
frame and therapy with Debbie. Last week I was doing great, I even
cooked 2 dinners for the girls. Today I went back to bed 2 different
times, I feel the same on the inside. I have to figure out what is
wrong.
I could never believe in a life time that something like this could ever
happen. And to think it occurs several times a day to numerous
people across the world (people getting hurt like Debbie). Is there
anything I can do to make a difference, only time will tell? Debbie
took me to work one morning and said “Jerrall have a good day, I love
you”. This was the last time I ever heard her voice. Often I feel sorry
for myself, but that will not help Debbie’s recovery. I look at her
locked inside her own body knowing she would forgive the man that
did this. It was truly an accident. I have to think, what I need to do
next. The next step in Debbie’s recovery and not back in the past. All
of this is easier said than done.
I want to say I would say today was a good day, a little jumping. She
is not talking but she is aware of her soundings.
Take it one day at a time.
January 20, 2006
Jerrall-
Susanne, the occupational therapist, practiced with Debbie washing
her face. It did not work, but at least it was a try.
January 19, 2006
Amber-
Today mom practiced weight bearing on her feet, by transferring in
and out of her bed. This was her first time helping with a bed
transfer. While she was waiting in the chair she leaned her head
back on her own. This was repeated several times. 6 pm we did a
short speech session. I asked her to stick her tongue out and she did
3 times. I ask her “what is my name?” she mouthed my name. I
asked her “what is your name?” she mouthed her name clearly. I
asked her to growl and showed her. She smiled real big at me
instead. How cute. Dad walked in the room and I ask mom to stick
her tongue out again. She pushed her tongue out with great control.
We are trying to gain strength back in the tongue muscle. 6:30 pm I
asked her what do you want to do? she mouthed something, I was not
sure. I asked if she wanted practice her balance, she shook her head
no. I asked if she wanted to lie down, she shook her head no. I ask if
she wanted to watch TV, she shook her head yes.
January 18, 2006
Jerrall-
Debbie did not potty last night. She did not have to be suctioned last
night either. She slept well until 6 am, and then I removed her brace.
She fell back to sleep until 10 am. Yesterday she had an extra
Klonopin for the removal/insertion of her peg tube. This is making
her tired this morning. I can not believe 2 months ago she used to
take 2 extra Klonopin everyday that made her unable to do therapy at
all. Today speech, was hard for Debbie to do 1 out of 3 flash cards.
She was unable to control her tongue. I did not tell speech about the
extra Klonopin from the peg procedure, I never want to make any
excuse. She is going to heal and recover in her own time. We just
have to have patience.
Today she has been extra agitated or jerky. With the extra medicines
yesterday and the changing of her peg tube, I think she needs rest
and time.
Tonight is the first time for us to watch 2002 Christmas videos. It has
take 34 months before I knew I was ready. This is the last time of her
on tape before her accident. When we finished watching the video I
asked her if she remembered. I saw 2 tears fall out of her right eye. I
never thought about her not being ready to watch these. We talked
about self-control and how she has to overcome this injury from the
inside out. I will do everything it takes on the outside until she is ready
on the inside. I could say today was a quiet, but good day. Tomorrow
will even be better.
January 17, 2006
Jerrall-
Debbie had no therapy today, she was extra quiet. At 6:30 am she
ate and I gave her an extra Klonopin. She does not get to eat until 2
pm since she is having her tube replaced today. This is why I gave
her an extra Klonopin earlier. The old tube had some residue from
medicines that were blocking the flow. It was 32 months old. Debbie
could not eat 6 hours before the procedure. She was sitting in her
wheel chair. Amber was on her left side and I was on her right side
holding her hand. The doctor came into the room.
The doctor went up to Debbie and wrapped the old tube around his
fist and pushed in with his other hand. While pulling out the old tube.
It was all so quick. They did not put any anatisha or pain killer on
anything. The tube came out so fast, before we knew what had
happen. In less than 2 minuet the doctor had installed the new peg
tube in the igsiting opening. For that 2 minuet she sat without a peg
tube at all. In those 2 minuets I felt like a giant weight was on my
shoulders again.
We came home at 3:40 pm. She went to bed early.
January 16, 2006
Jerrall-
Debbie had physical therapy, occupational therapy, and speech
therapy today. She was completely asleep during some of the
therapy. She still sat up for weight bearing. She has been on for
several days. She is finally starting to crash. Amber was with Debbie
most of the day, I slept 4 hours during the day, thank you Amber.
Tonight we did a shower and go into bed at 11 pm. She did not fall
asleep until 3 am after she went potty.
January 15, 2006
Jerrall-
She got up at 5 am jumping. She is extra on this morning. She is
taking her right hand and pulling at her lips and tongue. She is letting
me know her mouth and lips are dry and need cleaned. Today was a
day of rest. Debbie got a spa treatment, I cut and filed her nails.
This is an hour and a half job. She does not like this, but every 2
weeks it has to be done. She can not do the standing frame if her toe
nails are to long pressing on her tennis shoes. Gerald, Hellen, and
Garriet came over for dinner. Debbie acted shy. She is able to look
to her side. She went to be early tonight. Amber, Gerald, and Helen
hung family pictures in the hallway. Thank you so much.
January 14, 2006
Jerrall-
Debbie had a good day. Amber sent a letter to Michael’s dad via
message board.
January 12, 2006
Jerrall-
Today is Debbie’s 47th birthday. She slept good last night and
needed little to not suction. She is still really with us today. Bryan, the
physical therapist, came at 2 pm. She sat on the mat for 20 minuets
sole. Bryan said this was the best day yet. When he left, Debbie and
I went to her friend Taylor’s. Taylor gave Debbie a slight peal and
facial for her birthday present. When we got back home the 4 of us
celebrated Debbie’s birthday. She went to bed early and slept great.
January 11, 2006
Jerrall-
Today was Amber’s first day back to college this semester. She will
go to school on Mondays and Wednesdays. I hope speech and the
occupational therapist can put up with me this semester. LOL
January 5, 2006
Jerrall-
Big day or anticipated. At 1 pm Debbie had her EEG. Dr. Karner is
her new neurologist that was referred to us by another TBI. Ann was
the technician. This was Debbie’s first EEG without sedation
(Atvan). This is how the doctor wanted the EEG done. The first thing
Ann said when she saw the screen was that Debbie was one big
muscle. I did not want to take up Debbie’s time, so I did not ask for
an explanation. I can wait like a boy at Christmas until Tuesday to
ask the doctor to explain. Ann also, asked if Debbie was ever calm.
Debbie’s tongue was moving 140 times a minuet and her pulse was
78. Maybe 1 hour every 3 rd day when she is asleep she is
completely calm, even with all the correct medicines. I cannot say or
tell why if I could I would make it happen.
January 4, 2006
Jerrall-
Debbie slept good last night. I only had to clean her throat one time.
It seems like a week of little suction. The speech therapist, Robin,
said last week she saw the true Debbie inside come out. Today
while I was in the same room Debbie did not appear to want to
participate. Amber is always better for therapy, Robin says. It is like
Debbie, Amber, and the therapist have girl talk. Debbie is more
open when I am not in the room. Therapists say I do too much for her
and she depends on me too much. What nobody thinks of for 33
months, I have kept Debbie/s air way clear. We keep Debbie’s
muscles in tact when she was waking up from a coma with electric e-
stem pads. I am responsible for food and medicine intake and a
bowel program when needed at night, a shower, and wash her hair.
With out the girls all this would be impossible. By the time I sleep 2-3
hours at a time and Debbie is never unsupervised why would she not
over depend on me. With the last 6 months of therapy I have seen
Debbie start to come more out of her shell. After speech therapy had
left, I laid her down on the living room mat and to my surprise Debbie
was mouthing words. I could not tell what she was saying, but
defiantly having more control of her tongue and lips. I said vowels (A,
E,I,O, and U) and Debbie tried to mouth what I was saying 2 times,
this does not count unless the therapist actually see for themselves.
Today was the best day. The physical therapist, Bryan, come into the
room, said hello, and started talking. I noticed Debbie did not appear
to be paying attention to him. I asked him if he would shake her hand
and say hello when he comes in. This way he could get her attention
and talk to her, not around her. Debbie looked down and would not
shake his hand. I said in a louder than normal voice, “when you meet
someone it is polite to shake their hand”. I could not believe, Debbie
looked up at us and held out her hand so I shook it and then raised
her and to give her a kiss on the back of her hand. Then she held
onto my hand and pulled it to her lips and gave me 2 kisses on the
back of my hand. Bryan saw her response. At least he knows she
processes more information than people assume at first glance. I do
not know how relevant all of this; if I talk one to one and slower she
processes the information better with a delay.
January 3, 2006
Jerrall-
Debbie went to sleep about 11pm last night and woke up at 5 am
jumping. I only had to clean her throat one time during the night. Her
breathing pattern was as if she was really getting a good quality of
sleep. We left at 10:30 am for our evaluation with the doctor for her
peg tube. Debbie jumped excessively from 5 am until 12 noon, when
she went potty at the doctor’s office. I can not help wondering if
needing to potty and jumping are connected. We returned home at 1:
30 pm and she was calm. For the first time in 5 weeks she did not
have therapy in the afternoon. We took this opportunity to lie back
down on her air bed together. At first Debbie jumped for a half hour
and then she calmed down and rested for about an hour. She did not
sleep, but rested. By 4 pm she was back up in the wheel chair again
(I bet Debbie wishes she was not married to such a compulsive
husband). It is time to brush her teeth, clean mouth, and wash her
face. Debbie does not usually fight me about this, but this afternoon
she hit me 2 different times. Everyone must have a limit. At 5:30 pm
Krystal, Amber, Debbie, and I left for our first Brain Injury support
meeting. Debbie was with us all night, looking up at the lights when
she was board with what was going on. You could tell she was
touched by and comfortable with the whole group. Debbie was calm
and not jumping during the 2 hour meeting. You could tell Amber and
Krystal were also touched. On the way back I heard Krystal say how
great it was to talk to people that knew and had gone through this
experience before. I also was touched all day. Before the meeting I
felt a great weight on my shoulders and after 1 hour of leaving the
meeting the lad was lifted off. I felt, as if, we all belonged some
where. Tonight was shower and by 11 pm Debbie was ready for to
fall asleep. This was a great day. She only need suction 1 time
during the day.
January 1, 2006
Jerrall-
Debbie slept good last night, 1:30 am until 8:30 am. Today is a
beautiful sunny day around 60 degrees. Last night she did not go
potty or need to be suctioned. She is calm this morning with a slight
movement in her right hand. It has been a good day until 2 pm when
Debbie’s left eye turned red, her right eye turned under her eye lid,
and there were large drops on the upper left pallet of her mouth. This
only lasted 20 minuets. Now, 2:30 pm, Debbie is calm resting tilted
back in her chair. By 3:30 pm Debbie started saliva problem again
with her right eye back. She rattled until 6 pm; I finally had to lay her
on her left side on the mat to drain the saliva from her throat. I am
glad this does not happen as often as it used to. After an afternoon of
excessive saliva drainage that could end her life, if not suctioned,
came a perfect end to the fist day of the New Year. At 8 pm Debbie
and I sat down to watch extreme makeover on TV.