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Jerrall-
Best day in a very long time. Woke up at 6 am. I got Amber at 8
am so I could lay down 8:30 am – 10:30 am. Today if you ask
Debbie where her ears, nose, eyes were she could point to them with
her right hand. Put her lips together. She even stuck out her
tongue. Debbie is really with us today. Debbie did the standing
frame for 35 minuets.
Amber went to Boone in the mountains today for 2 nights with a
bible study group, she really needs the break.
Tonight Debbie’s right eye looked tiered so about 10 pm we started
off to bed. First I laid her down and pulled up 2 blankets. I place her
right hand on the outside of the blanket so she can not try to pull
her stomach peg tube out (where I feed her via bolus formula and
meds). I wanted the medicines to start working before I put her
braces on that make her feel restrained which in turn will increases
her tone and jumping. In this process I heard Debbie rattle her
breath/throat and I told her I would check her mouth as soon as we
finished and I had a hand free. So Debbie calmed down and did not
make any more rattles. Debbie can not talk and this is away for her
to communicate, but if you are not with her all the time you would
not know she was communicating with you. So after medicines and
food I forgot Debbie’s mouth and proceeded with my every night
routine; clean pet tube, install new sponge IV pad, put on right leg-
knee immobilizer brace, put on left foot, leg positioner brace, and
stretch out left arm and finger. Until Debbie is asleep I can not put
on her left arm Bi-valve cast that keeps her arm extended when she is
sleeping. I can not tape her left eye lid shut until she is asleep.
So it is 11 pm and all the lights are off. Debbie is positioned in her
hospital elevated air bed with my twin bed on wheels rolled up
beside her. I reach out to hold her right hand so I know what she is
thinking or if there is a problem. Touch is the only one sensory I
have learned. Listening to the depth of her breath, and how she is
swallowing you can tell if or when she is asleep or how much saliva is
in her mouth. Rattle in her breath is something you never want to
hear because that means debris or secretions are deeper in the base of
her throat. She has never had pneumonia or aspirated. Debbie knew
I forgot her throat and stated jerking her right hand in the dark.
After I did not figure out what went wrong in a couple of minuets
she coughed. I looked in her mouth with one of the small flashlights
we keep by her bed. To my surprise there was a wad of phylum the
size of a quarter Debbie had coughed up from deep in her throat and
it was milky in color, stuck to the uvula area. I caught it with the
suction wand, but it was to thick for it to pass through the wand of
the yanker. So I trapped it on the roof of her mouth and took my
other hand to grab the tooth brush. We keep a tooth brush beside
the flashlight to remove phylum before she swallows it. For the last 3
½ months since August 2005 this is the routine before Debbie finally
goes to sleep. August and September I no longer saw Debbie
getting weaker and weaker since the baclofen pump had been
decreased in February 2005. I thought August and September
Debbie would die in her sleep from silent aspiration from her own
saliva since I am getting little sleep and would not hear anything. I
wish we had a pulse ox like we had in rehab where the alarm would
sound if she was not getting enough oxygen. In October Debbie’s
cough reflex was getting stronger where often if to much drainage
collects on the flap in her throat or blocks her air passage if Debbie is
not to sedated or tired she will cough up debris. It will wake me up
because debris has to be suction or cleaned up right away or debris
could be swallowed again and choke to death. I never would have
believed life could be so sensitive, thankfully I am someone that does
not require much sleep. I left Debbie’s room with the door open to
write this note because I thought she might be sensing my present as
a bad thing. It is now 1 am and I have had to cleaned Debbie’s
airway several times because of a rattle. I can see drainage from
removed wisdom teeth areas on both sides and in back of the throat
coming from the above in sinuses and with suction wand from ducks
on both sides of uvula. When ********Debbie’s throat at 1:15 am I
noticed her pants were wet. So with low light from flashlight as if
not to over stimulate her I changed her. This requires removing all
her braces and putting them back on again. It is a good thing Debbie
went potty now instead of just after she went to sleep and waking
her up. Now it is 2 am, there is still drainage and now her right knee
and toes are jerking after pants are good, shirt is got, everything is
check ok. I figure it is just fatigue. In rehab we had a PRN medicine
for this situation. Dr. Hammond used to tell me to give Debbie
medicine if she did not go to sleep after awhile so it would not mess
up therapy the next day. But extra medicines make Debbie groggy
the next day. Amber is the one with Debbie at 11 pm to sleep. I
know she does not give extra medicines but tonight there is to much
drainage, her right leg is jerking, and for her to get any quality of
sleep she needs something. So I gave her 10 cc of benadryl and 2 mg
of diazepam. This has stopped her leg from jerking, but as of 2:20
am she is still slightly having drainage and Debbie is still not asleep.
When Debbie has been extra on during the day this is normal for her
not to sleep but 2-3 hours.
2:30 am Debbie is finally asleep.
2:24 am I guess it is ok for me to go to sleep for a couple of hours.
November 17th
Jerrall-
Debbie starts jumping and it is never the same thing wrong. I just
have to check the list of possibilities until I figure it out. You know
when Debbie starts to relax. Just a tight shirt, tight pants, sitting to
long, or over stimulation can be the cause. From 4 to 6:30 pm
Debbie is still jumping even after medicine and formula, so I need to
try something else.
Note. Today I talked to our old home health agency. Before Debbie’
s 6 month phazitrist (doctor) appointment Monday (11-21-05) I
wanted to ask how the system works. You only get what you ask
for and no one even tells what to ask for. People always ask me
what I want and I always say I do not need anything, but what does
Debbie need. Because of oral suction and medicines through her peg
tube at stomach I have only been told I can have 12 hours a week for
someone to clean house, do laundry, or cook meals. I was lead to
believe a RN’s is the only one to give medicines and that type of
experience is out of the questions. I have read it is better to set and
hold a brain injury patients hand than to just let them set alone while
you clean house. But with Krystal and Amber the house is not the
issue. My main issue is getting enough sleep to have the energy to
be there for Debbie when she needs me.
So today is the first time I realized Debbie and my #1 need is to have
a RN at night from 10 pm until 2 am. I need help at night so I know
I can get at least 4 hours of sleep every night. #2 need is the daytime
therapy for Debbie. So I called an agency back and asked if they
have ever done anything like this. They said yes Dr. Hammond just
needs to write orders. This whole time all I have to do is get doctor
orders and have funds approves for help, this is hard for me to
believe. So we will just have to wait until Monday to see if this is the
way the system really works.
At 8 pm when I laid Debbie on the mat to do leg stretches like we do
every night, she went #1.
8:30 pm Debbie is still jumping since 4 pm so tonight is shower night
so I checked and gave her a suppository, maybe this is what is wrong
we will know in an hour.
November 15th
Jerrall-
Today stared for me at 2 am when I changed Debbie. At least I did
not wake her up. She slept good and did not need suction except to
clear her throat from regular drainage around 5 am. Debbie did not
open her eyes until 7:30 am which is 2 hours late. I gave her
morning medicines and water and she went back to sleep until 10:30
am. Which is really unusual. When Debbie woke up she appears on
and not to tight or jumping. It took 1 ½ hour to stretch, back rub,
brush teeth, change shirt, and wash face. Debbie must be breathing
more through her nose because her tongue did not have even a
coating on it. This afternoon about 2 pm she started needing
suction every couple of hours. What was different was there were
no tear drops on her upper left pallet. This drainage was in the back
of her throat.
November 14th
Jerrall-
You could hear Debbie’s deep breaths all night long, not snoring but
in a deep resting sleep. Debbie did not require any suction threw the
night or this morning. About 7 am she woke up and she had tight
fingers, arms, and legs. Her mouth was dry. Debbie has not gone
potty since 2 am which is different than normal. By 5 am she usually
goes and it wakes her up. So after morning medicines, water,
cleaning mouth, good stretch to arms, and legs. I rolled Debbie over
on her left side like we do every morning and gave her a good neck
and back rub. Debbie’s muscles relaxed completely, her head leaned
back and she went back to sleep. After half an hour I let her lay on
her back and you could hear that deep breathing again as she slept.
So I stay in her room with her until she wakes up. At 10:30 am she
wakes up and I went over and told her good morning. Debbie gave
me a big smile. I asked her did you sleep well and you could hear her
say “what” aloud. I washed her face, pants on, arm and leg stretch.
When Debbie was up in her wheel chair everything was normal. So
we came into the living room and she went back to sleep. So I took
her glasses off and wrapped a large blanket around her and let her
sleep. I did not want to get her days and nights confused but she
did not sleep but 1 ½ hours Saturday through Sunday night.
Debbie slept in her chair until 1 pm so it is lunch time and Debbie had
been sitting for 2 hours so I laid her down in her bed. I stretched her
legs and let her sleep. Debbie had lunch and noon medicines in
bed. Finally she woke up at 2:30 pm. I put her in her chair and we
went into the living room, this time she stayed awake. At 3:30 I laid
down for a couple of hours to get ready for tonight. Amber worked
with Debbie while I slept 2 hours of this kind of sleep where I do not
have to listen if she is breathing. Before I laid down I noticed Debbie
was jerking her head and right arm a little more than usual. When I
got up Debbie and I watched an hour of Jumanji on CD. I remember
when Jumanji was released. Debbie, Amber, Krystal and I went to
see it on Christmas Day in the afternoon, years ago. The movie was
so good we went out and brought 4 more tickets and saw the movie
again that same afternoon. Either we were really bored or it touched
something inside us. Ever time Debbie sees Jumanji now she pays
extra attention as if she remembers some of the past. About 7 pm I
laid Debbie on the mat and started our nightly routine before bed.
With prolong stretches to the arms and legs Debbie will loosen up for
a short time so this has to be done several times a day. But before
bed is most important. When Debbie’s baclofen pump was set at 17
MPG 24 hours a day Debbie never got tight as a matter of fact the
medicine was so strong it paralyzed her. She could not respond
cognitively. When some one would ask me how she is doing I
would not say but I knew she was getting weaker everyday to a
point I asked myself about quality of life. When Debbie had atrophy
of her colon which and took her to a hemorrhoids specialist and he
said it was atrophy not hemorrhoids I had enough. February 8th
2005 I asked Nero to decrease pump to 18 at night and 10.5.
During the day they did but words were exchanged and no one was
happy. In March of 2005 Nero told me to get someone else to
maintain baclofen pump if I wanted to lower any more. For the last
8 months I have tried to get alone and not change any medicine
dosage or baclofen level. I see now Debbie needs baclofen but it is a
no win situation or trade off. I chose lowering or less baclofen, more
cognitive and a lot of work stretching her muscles all day long. 11-21-
05 when we see Dr. Hammond I will ask for recommendation to
have pump increased to 12 during the day to keep Debbie from
having muscle spasms as often. Also it should help her feet from
turning. I do not know I am just a man and a husband. I wish there
was some one in the medical profession that could take control of at
least this. Nero always passes the responsibly by saying a coached
line-it depends on what your goals are. When I ask for a definition
to that they only repeat the same phrase.
Tonight we went to bed at 9:30 pm and we both went right to
sleep with no suction.
November 12th
Amber-
I asked mom to take a deep breath and she did. I told her we
are going to look at some flashcards. She looked at the bag I
was holding. She did celery great. When she did sitting
balance she fought a bit. She then began to relax and
cooperate. Later she let me straighten her arm. 3-4 pm she
had a big saliva problem.
November 11th
Amber-
7:30 am mom woke up just a little bit. She ate early. She
slightly woke up at 8:30 and when I started to get her ready
to get up, she feel back to sleep. I let her sleep till 10:10 am. I
began to run my fingers threw her hair to see if she would
wake up. As she opened her eyes I ask “are you awake” she
responded by closing her eyes to link slowly while shaking her
head yes. She was acting as if she was blinking her eyes to
wake up more. She shook her head yes so cute.
November 10th
Amber-
This morning I asked her if she wanted to get up, she shook her head no. I
asked if she wanted to lay down she shook her head yes. We did flashcards
today and mom whispered in a voice for the first time the card “open”. I
asked her to close her eyes, she did 2 times great.
November 9th
Jerrall-
Today started early for me. Debbie went potty 2 am and I
was able to change her without her waking up. I laid back
down in my bed beside hers.
4 am Debbie went potty again, but this time she woke up and
was jerking with her right leg and arm. This time I laid down
with her in her hospital type lifting bed. I put her legs over
mine trying to stretch out her muscles. Most of the time when
I take off her refining leg brace and lay in her bed, she will go
back to sleep. She did not go back to sleep.
5 am I thought Debbie might be hungry o I have her 6 am
medicines and tube feed early. She continued to jump a lot. I
think the problem was more that Debbie was afraid of
chocking. Every 20 minuets during the night, even when she
was asleep I had to do suction and she would surprise me. She
would reach out with her right hand and jerk the suction
wand out of my hand as if I surprised her. At 6 am I gave up
the idea of sleeping for either one of us and we got up. As
soon as I got Debbie up in her wheel chair and brushed her
teeth she stopped jumping (jerking). We watched TV together
and
watched the sun come up. I waited until 8 am and woke
Amber up to be with Debbie so I could get a few hours of
sleep. Amber leaves for college soon, so if I want some sleep
it must be now. I got back up at 10 am and Debbie was not
tired at all. She could put a ball in the cup so I knew she was
on and aware of her surroundings. While grandma watched
Debbie I got the truck loaded with her bad containing
medicines and the pump. Debbie is out of the house at least a
couple of times a week so this is not a big deal. Deb
has two doctor appointments today. The first one was a Dr.
Rachimia’s to get a phenomena shot. This is the first
phenomena shot Debbie has ever had. When we got her flu
shot on Tuesday the nurse told us she should have a
phenomena shot. Grandma said this shot hurts your arm for
several days. We need to do extra range of motion with
Debbie’s arm being that she does not move around much.
When we got back to the truck we had to drive a hour to
Debbie’s eye doctor appointment. On the way grandma kept
wiping Debbie’s left check. I did not think anything about it
because she was breathing ok and grandma said it was like
tears on her left check. When we got to Dr. Hobb’s office and
I started to get her out of the truck I could see on her face
what was going on. Debbie had been setting next to grandma
and I for a hour and she had been drowning the whole time
without making a sound. 8 months ago out patient speech
therapist said be careful putting any liquid in Debbie’s mouth
because she could be a quiet aspirator. In the truck Debbie’s
left eye was pouring out liquid and was red as if a blood vessel
had busted. Liquid was coming out of her left nostril also.
When I looked in her mouth instead of seeing tear drops of
thick clear saliva on upper left pallet I saw her throat full of
clear saliva 1/4'” thick. Debbie could hold her head up and
her right eye was up under her eye lid.
Amber-
Mom shook her head yes and no today. We went outside.
The standing frame was jumping today. She was wild from 11:
40 am to 1:35 pm. At 2 pm mom was very calm almost tired,
but slowly communicating. We went outside again 5:30 to 6:
30. At 7:45 pm mom was alert and worked well with the
weights and his arm. Her eyes are very alert. She blinked
before I put in her eye drops. This is new for a few months.
November 8th
Jerrall-
2 am Debbie went potty, but I was able to change her without
waking her up. Debbie was still asleep at 6 am, but today we
have to get a flu shot. Of all the mornings to be tiered. I got
Debbie dressed in bed and her shoes on and got her up in the
chair and off to the car. On the way to get the shot and on
the way back home Debbie barely opened her eyes. I think
Debbie really did realize that we left home. But to my
surprise when we got home Debbie put the ball in the cup so I
know she is in there. Debbie’s mouth is still extra dry today.
It is 8:30 pm and today has been a very good day with
Debbie. No suction all day. Amber and Grandma went to
college classes and Krystal went to high school after the flu
shots. The house was quite and Debbie responds differently
when alone. When Debbie rides in the truck she holds her
head up differently than at home. At the mall the last two
months she will lean her head forward in the head rest until I
remove the head rest. Then she holds her head up on her
own, not level but she is holding her head up.
Setting beside Debbie right now, holding her forehead while
she watches a TV show, she knows I am writing and not giving
her 100 % attention. So she starts to fake coughing. So I stop
and look with a flash light. Have not had to suction all day
except when we brushed her teeth twice. Now Debbie’s
mouth is dry, but saliva on uvula has dried and causing her
irritation. I know because I used the suction wand and pulled
out 1/4” x 1” of dry sticky saliva from her uvula that was
down in her throat. After I cleaned and moisten her mouth,
Debbie is fine again. All day Debbie has put the ball in the cup
with out command.
11-21-05 Debbie sees Dr. Hammond and hopefully she can do
some impatient or outpatient rehab
November 7th
Jerrall-
Debbie slept great last night. She went to sleep by 10:30 pm.
She went potty at 2 am and 5 am. I did not wake her up eight
time. At 6 am when I go up to get Debbie’s early morning
medicines her right eye was wide open, but she was not
jumping or moving at all. When I came back from the kitchen
with the water and medicines her eyes were closed and she
went back to sleep. When it came to her food and medicines
at 9 am Debbie was still asleep. She had her breakfast in bed.
After Debbie is on and has little sleep she crashes and has to
catch up on her sleep. This morning is a good thing. After the
9 am medicines Debbie was still asleep so I washed her face,
cleaned out her eyes, brushed her teeth, and got her dressed in
bed. By 10:30 am she was still asleep but could not lay in the
bed anymore. I picked her up and put her in her wheel chair.
It took about 15 minuets, but while I was putting her shoes on
she started to wake up. At 11 am I wanted to know if she was
with us so I gave her the tennis ball and she reached out and
put it in the cup. This is early in the day to be playing ball.
We left home about 11”30 am to go to acupuncture.
acupuncture went great this morning, it was the first time for
Dr. Zipkin to see Debbie put the ball in the cup. The doctor
worked on tone in the hands, feet, and neck. After 15
minuets Debbie was almost asleep not jumping, jerking, or
moving a muscle. Then we came back home.
4 pm did the standing frame. Debbie must have hurt
somewhere because after 15 minuets she started to jump and
had to come down. At we tried. Debbie stands at least 5
times a week with Grandma here. When I laid Debbie on her
living room mat, she put the ball in the cup again. She is still
with us. Debbie has not had a secretion issue all day. Wow it
is 5 pm time for Debbie to eat again and have her medicines.
Potty 2 am, 5 am, 3 pm, 10 pm, 2 am Tuesday morning.
Debbie sat in the chair calm and had dinner and medicines
while watching TV until 7 pm. Debbie rested on dining room
mat about ½ hour. Then like every night this time Debbie
practiced sitting balance, legs and truck exercises. Debbie’s
afternoon and evening balancing exercises are getting
stronger. Debbie’s mouth was extra dry tonight. She had
several ice chips to relive the dryness. Debbie got to bed by 10
pm and went to sleep right away. When Debbie first went to
sleep she needed suction a couple of times. Tonight was a
good night, no suction was needed and she had a good deep
breathing pattern.
November 5th
Amber-
On the standing frame mom put 5 rings in the bowl.
November 3rd
Jerrall-
It is 9 am and Debbie is still asleep and resting. She is not
snoring, but breathing deep. She needed a couple of suctions
the first hour after she went to sleep, but did fine the rest of
the night. At 9:15 she woke up first, I heard her not making
any sound as she breathes and her right hand is starting to jerk
back and forth. Then her eye lids open and her tongue starts
to jerk. The jerking is almost like a muscle spasm in right her
arm, throat, and tongue. Debbie was calm this morning until
I put her in the truck to go to acupuncture. It makes me
wonder. At first at acupuncture Debbie was still jumping, but
after 15 minutes she calmed down. We stopped by the mall
on our way home and sat outside by the water fountain far
over an hour. It was so warm outside. Debbie seemed to
really enjoy this afternoon. On the way home in the truck
she was calm, go figure. As of 7 pm tonight she has not
needed suction all day this is new. After yesterday it is like 2
different people. It is like when Debbie is really on, the saliva
issue is bad and her left eye looks like every blood vassal is
busted. To my surprise after laying her on the mat and
resting I put her in her wheelchair, I asked if she wanted to
watch a little TV before bed. Debbie did not rely. So after
setting in the chair for 15 minutes like a light switch Debbie
turned her head and just stared at me. Debbie is extra aware
of her environment even trying to talk. After 5 minutes
Debbie has a saliva issues. I did oral suction and 15 cc of
benadryl. It appears more often to me along with cognition
comes the excessive saliva on the left side of her pallet, back of
her throat, ad the left nostril. Also her left eye becomes extra
red lid all the blood vessels have busted. If she is ever left
unsupervised she could chock to death in a matter of minutes.
Or if suction was not available she would not make it. This is
not a problem with Amber or I because we at one time had to
do suction threw a trach. Now and then a dentist wand is
basic. At 10 pm it is bedtime. Everything is going ok; Debbie
does not look very sleepy. We have to stay on a scheduled. I
pray Debbie gets one more good nights sleep. Throat has
dried up and no more suction tonight so far by 10:30 pm
Debbie is asleep but before she went to sleep she was on and
helped me do things. We just pray she wakes up on.
November 1st
Jerrall-
8:40 pm went to bed and ate, put on leg and arm braces.
9 pm finished everything for bed, ready to go to sleep.
12 midnight Debbie still just laying there not asleep, but calm.
1 am finally went to sleep.
2:30 am went potty (#1). I changed her without waking her
up.
4 am Debbie woke me up making a popping sound with her
tongue. I used the tooth brush and put water in her mouth,
very little debris and has not needed oral suction all night. I
said “Debbie you doing ok” and she gave me the lightest smile
with the right side of her mouth. I guess she just needed a
drink of water.
4:15 am Debbie still awake, I gave her 6 am medicines. I gave
her a whole Klopin instead, hole Propranolol like usual, and a
half of Diazepam. I got into her little hospital bed like always
this time of night and took off all her braces. I put her legs
over mine and she just started to relax except for her throat
which I massage a little.
5 am Debbie is not moving and is relaxed, but her eyes are
wide open, she is still awake.
6 am Still awake and starting