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Jerrall-
No one knows but in 10 years we could look back and see all of the
issues of this journey and see what all we have been through. No one
really knows what the future beholds except God. On earth all we
have is faith. As long as Debbie is able to breathe on her own there is
always a chance of hope.
Debbie slept 5 hours which is a lot more than most nights. But this
week Debbie has done what every it takes to get me to lay down with
her each morning. I do not know if this is a good thing or a bad thing,
but if our days are numbered then it is a great thing.
This morning Amber helped me take Debbie to primary care doctor
about the rash on Debbie’s right arm. Dr. Rachima said it was hives
and gave us a prescription for Prednisone. He said put Debbie back
on all of her meds and let him know in a week if the rash was not
gone. Amber also got some over the counter meds for hot flashes.
This afternoon Susanne OT came and worked with Debbie and
Amber. Debbie is still so weak in her neck. I would say we are starting
all over again with Debbie’s strength since coming out of the coma. I
can not believe how much a urine infection and a pic line can change
things. I though to night went great but I forgot this also means Debbie
is more a where of her surrounding [good thing or bad thing].
This afternoon we move Krystal out of the dorm at college it seams like
last week we were moving her in. Where does time go?
Tonight I got Debbie to bed as normal and Bernice gave her even
extra meds but Debbie did not look tired at all. After jumping an hour I
removed her braces and she had gone potty again. Also the sweating
from the hot flashing are back. So Bernice and I got Debbie up in her
wheelchair, removed Deb’s shirt and wiped her off with a damp cloth.
After putting on a clean new shirt Debbie quite sweating and after I put
Debbie’s hair up in a pony tail it really helped. At 4:30 pm I left Debbie
with Bernice watching TV and I had to lie down and get some sleep
some I can be there for Debbie tomorrow. You know when you are in
love when you have to leave your alert and awake wife so you can get
even a little sleep for yourself so you will be able to start all over again
tomorrow.
This has been one of the longest days ever.
April 28, 2007
Jerrall-
Last night Krystal said Debbie needs to get out get out of the house.
So we got are travel bags and went to the mall patio where we have
been many times. Krystal went in and got some food for us while I got
Debbie out of the car. When I put Debbie in her wheelchair and turned
to close the door and Debbie made 2 of the loudest choking sounds I
have ever heard. So I checked Debbie’s mouth and did extra suction.
The secretions were coming from the upper left pallet of her mouth.
Krystal called me on the cell and I said this was not going to work so I
got Debbie back in the car. On the way home Debbie did great with
her saliva. It was like her way of saying she did not want to be around
strange people.
April 27, 2007
Jerrall-
Last night Debbie only slept 3 hours. I am so tired today I can not
remember what we did.
April 26, 2007
Jerrall-
This morning started at 5:15 am with the nurse Stephanie calling my
name. I jumped up and went into Debbie’s bedroom where Stephanie
was leaning over Debbie giving her a breathing treatment.
Stephanie said she wanted me to be a where of what was happening.
The breathing treatment was not helping because of the shot breaths
Debbie was taking. Debbie was afraid when she woke up and had
great tone and tremors.
Anxiety is Debbie’s worst enemy now days. Stephanie gave Debbie ½
mg of Ativan and it did not make a difference. I worked with Debbie’s
respiratory while nursing worked on meds and breakfast. Today we
started back 2 Urised a day for 2 days. If no rash again then we will in
crease to 4 tabs a day and the after 2 days to 6 tabs per day.
I got all of the braces off and Debbie’s up in her wheelchair and we
went to the living room to watch a movie to get Debbie mind off what is
happening. Nursing finished up her morning meds and food and
paper work. Nursing left at 7 am but asked me if I could handle Debbie
a lone even though she had on idea what to do. For the last mouth
Debbie requires extra special care and with new nurses all the time I
do not have time to train them every night. Debbie’s oxygen stats were
90% - 94 % with a pulse above 100 and sever tone and jumping. With
Debbie setting up in her wheelchair I first made so Debbie’s air way
was clear then we did another breathing treatment. Still oxygen level
stayed below 94% and a high pulse above 100. When treatment was
over I let Debbie rest for 15 minutes. With pulse still rising I put an
oxygen mask on Debbie at a 5 liter flow slowly stats got better. I
checked Debbie’s body all over and the rash on Debbie’s right arm
was all gone. Also Debbie’s body was wet and clammy and sweating
all at the same time. I got a wash cloth and wiped down every thing to
cool Debbie down. I left a cool cloth on Debbie’s neck and it seamed
to help. Debbie has had a lot of hot flashes for the last week. This is
the main issues for all of the extra tone. I put another oxygen mask on
Debbie and started a flow that would keep the stats up and as Debbie
became more stable and pulse dropped I would lower the flow rate.
When we got to 2 liter flow I left the masked on for all most a ½ hour.
When Debbie’s tone improved and pulse stayed in the lower 80’s
Debbie took off her mask and handed it to me. In 2 ½ hours Debbie is
at 97% on room air and pulse at 83 %. We are setting together with
why left leg on Debbie’s foot rest and her leg over mine with a slight
kick. What a way for either one of us to start a morning.
At 10:30 am Debbie is calmer so I laid her down on the mat to see if
she could take a nap or rest. After a ½ hour we got back up stats
were94 % and pulse of 82. The wind is blowing outside and it is in the
70’s so at 11 am we went outside and set on the screen porch. It is
good feelings watching Debbie interact with the outdoors. We still
need to do oral care and wash Debbie’s face and get on both shoes
before lunch. A store where Debbie used to shop gave us some
sample herb creams Tuesday on our way home from Nero. I have
been having trouble with Debbie curling her toe up when I put her
shoes on and today with a foot massage with this cream there was no
tone in Debbie’s toes and no problem getting both shoes on. I know
my hands were tingling.
Susanne came early today and we were having lunch on the screen
porch. Susanne wanted to know if I had a routine that this would help
Debbie to know what to expect next. Susanne said Debbie has good
and bad days and lately with the hot flashes. Susanne wants me to let
Debbie help me with the laundry and at the grocery store hand me
items she can handle with one hand. Mainly try to include Debbie in
every day things that have to be done. Debbie can itch her nose or
take off her glasses or any thing that is important to her. But does not
want to put a ball in a cup. When OT left we came inside and rested
on the den mat. Debbie had a saliva issue for about an hour and
oxygen level was around 90 % which is too low. Debbie has been up
and down a couple of times on the mat and a lot of range of motion. At
7:30 pm Debbie is watching TV and is at a 100 % on room air.
Debbie never takes a nap or sleeps during the day. To night is
shower night and Debbie is in a deep sleep in her chair at 8:30. When
Amber gets here we will see if shower will be tomorrow or what.
Bernice was in a wreck last weekend and will not be back until Sunday
night. I hope we have a nurse that knows Debbie to night this has
been a rough week with 3 to 4 hours sleep. Debbie has had 2 oxygen
drops this week in the last 4 days.
April 25, 2007
Jerrall-
Debbie slept 5 hours last night and I got her up at 5 am. Today has
been a slow day and suction has been ½ of what it has been the last
few weeks. Debbie’s cough is getting stronger with all of the extra
suction. Still Debbie has not been talking to me today or the last few
weeks. Today Debbie did reach out for me in her wheelchair and that
is a first.
Today we went to Nero to get Debbie’s baclofen pump refilled. Also
they did x-rays to make sure the catheter was in the right place and
not cracked. If Debbie had to have an operation she would have to be
put to sleep and be on a ventilator. I am told if Debbie is put on a vent
she will probably never be able to breathe on her own again. When a
brain injury or coma person is put to sleep there is more than a 60 %
chance they will not be able to be awakened. So the last thing we
need is an operation. Every thing checked out find. Debbie dose was
not changed but instead of a low dose during the day and higher at
night it is now set the same dose all of the time. Hopefully this will help
the ankles and allow Debbie to start standing again. On the way home
we stopped at the mall and Debbie seamed to enjoy herself. We got
some herb cream for skin and feet. Also some salt scrub. This is a
store where Debbie used to shop before the accident and they gave
Debbie a lot of samples. The foot rub make my hands tingle and
removes the tone in Debbie’s toes so it is easier to get Debbie’s shoes
on. It is so important to have Debbie’s shoes on every other hour or
her feet will turn and we will never beable to get her shoes on.
Tonight Brenda came over and worked with Debbie for 5 hours.
Range of motion comes first for almost an hour while Brenda talks to
Debbie about both of there days like Debbie is going to answer her
back. Brenda read some more on a book they have been working on.
At the end when Debbie needed to rest they watched a DVD. Every
time Brenda works with Debbie she has no problem going to sleep. My
goal is to get Debbie standing again Sunday with Brenda. Because of
the tone in Deb’s ankles she has not stood up for 5 weeks.
To night Debbie went right to sleep at bed time and did not have any
oxygen issues. Today was a good day for Debbie and seeing some
one care so much about Debbie I can not explain the feelings.
April 24, 2007
Jerrall-
This morning started at 4 am with the sound of the pulse oxygen alarm
going off. I went into Debbie’s bedroom and the nurse Stephanie was
waving for me to hurry. The first thing is to be calm and then remove
Debbie’s braces and next get the oxygen mask on at a liter flow that
raises Debbie’s oxygen level to above 90%. The first thing Stephanie
said was that I know what to do and then Stephanie started to calm
down. When Debbie was stable I got in her bed and told her every
thing was ok while I was stretching her. When Debbie is afraid she
takes short little breaths and starts to pant and stats drop. The more a
where Debbie becomes the more issues that there is to deal with. This
is why Amber does not want to be alone with Debbie for more than 4
hours at a time. RN nurses have to learn Debbie’s routine before they
feel comfortable to be alone with Debbie. Because of this level of care
Debbie requires to not aspirate we need more hours of nursing. I am
only 1 person and when Debbie needs suction thru the nose it takes
two people.
Today went so fast getting Debbie ready for her dentist appointment.
Debbie’s oxygen level was good all day but still needed suction. I fell a
sleep on the black mat with Debbie so we were 10 minutes late for the
dentist. Debbie’s teeth next to the eye tooth have not moved but the
teeth on both sides and the 2 in front all were fractured at the gums so
they are pulling inward. So Debbie has rubbed her lips raw and has
dried blood on her front teeth every morning for the last month. The
dentist shaped the 2 good teeth so they did not rub the gums as
much. This may give us 6 more months and at some point the turning
in will become stable and then we can go from there. On the way there
and home Debbie only had tremor in her mouth and lips. Debbie’s
hands and feet were calm with no extra meds. It is indescribable the
feeling I get when Debbie is at peace with in herself.
The dentist office is one block from where the accident happened and
today was the first time it bothered me.
April 23, 2007
Jerrall-
Debbie has been waking up around 5 am for the past 2 week which is
good but different. Also since starting Flowmax Debbie has been
controlling her bladder. I still laid down with Debbie and stretched her
out before starting our day. Amber stayed last night and spent some
time this morning with Debbie so I could get some sleep. When I got
up OT Susanne was working with Debbie. It must have been a hard
day for Amber because when I saw her she said she needed to just get
away. Debbie and I worked on oral care and some suction and
everything was ok.
Brenda comes Monday, Wednesday and Sunday 5 hours a day.
Normally 5 pm until 10 pm. To night we went over range of motion and
getting Debbie’s shoes on. Debbie can use all of the stretching she
can get. After about an hour they went into the dinning room to do
some therapy. This gives me a break and some one new to stimulate
Debbie. When Brenda finished with Debbie to night Deb’s left arm and
leg was so loose. If only I had the time I used too, to keep Debbie
stretched. Brenda gives inspiration to decide what is most important.
Always if Debbie will not do therapy then stretching is something
Debbie can not say no. Debbie has not stood for six weeks because
of the tone in her ankles. Two more days we will get the baclofen
pump refilled and hopefully set the pump a little higher. If I can get
Debbie a little looser Brenda can help me with standing or at least that
is the goal for next week.
The night went fast I took Debbie to the restroom before going to bed
and everything worked out we were an hour early. I got Debbie to bed
and I laid down with her until nursing came. I think we both went to
sleep then Debbie coughed and I jumped up to do suction and at that
point was when Stephanie can in the room. I wonder what she
though. Debbie stayed a sleep and Stephanie gave the meds while
put on all of the braces.
Debbie had a good day and with half as much suction. The rash was
gone from right arm but I want to wait one more day before starting
back on Urised.
April 22, 2007
Jerrall-
Last night Debbie slept 12 am until 5 am and had 1 extra breathing
treatment at 4 am. Debbie only potted once and the night before was
able to hold it all night. The Flowmax appears to be working.
Stephanie did not want to wake me up at 5 am but came to get me at 6
am so I could get Debbie up in her wheelchair. Only I was not in my
bed I had already went into Debbie’s room and started to get her up
when I had Jerrall where you.
Debbie had been jumping in her braces for a little while so when I got
all the braces off Debbie was so tight I got in bed with her so I could
gravity to stretch Debbie’s legs. Laying on my right side I could also
use my hands to stretch Debbie’s left hand and neck. After an hour I
was able to get Debbie up but still there was some stiffness and still
kicking in her chair. Debbie watched TV for an hour while I did oral
care and worked on neck. With the kicking getting worse we move to
the time machine mat in the den so Debbie could see all of the new
leaves and flowers blooming. It is spring where did winter go. With
Debbie laying on her left side the weight though her shoulder always
let neck and left arm and hand relax where I can open Debbie’s
fingers. I have learned to use gravity to help Debbie not forcing her to
do some thing Debbie does not under stand why and fights me back.
After a hour stretch on the mat and #1 I got Deb back in her chair
again but now at 10:30 am Debbie is calm and with no extra meds. I
put Debbie’s shoes on while she will let me. If I do not keep Debbie’s
shoes on and off every hour the pain from the muscle cramps in the
toes or ankles will cause more jumping or tremors. We are watching a
home show and Debbie is having a saliva issue. So we are doing a
breathing treatment on a 6 liter flow while still watching TV. I have
mounted all of the TV’s 6 feet off the floor on wall mounts so Debbie
has to hold her head to see the TV. By turning Deb’s chair it is
another way to stretch Deb’s neck. It has taken from 5 a until 11:30
am to get Debbie stable.
April 21, 2007
Jerrall-
Stephanie the nurse last night said Debbie had a good night and she
only had to give Debbie one breathing treatment at 4 am. I checked
on Deb twice last night and Debbie was a sleep and had a good
breathing pattern. At 6am when I checked Debbie was awake so I got
her up in the wheelchair and then Stephanie did meds and bolus food.
Today Amber was here and watched Debbie while Krystal, Max and my
self move all of the furniture and wiped all of the base boards and
ceiling fans. All but the bathrooms and the den have hardwood floors
so Krystal polished them to where I have to be careful not to slip and
fall down. We set Debbie’s bedroom up different hoping to have better
flow. The girls got all of the laundry done, folded and put up. There is
something about spring that makes people have more energy. Amber
only did one breathing treatment during the day.
Amber went home about 6 pm and Krystal wanted to get Debbie out of
the house for a little while to night. We drove about 10 minutes to the
mall and Krystal went into get some food while I got Debbie out of the
jeep in her chair. Debbie started to make a loud choking sound I have
never heard before. So with Debbie setting in her chair beside the
jeep I had to do extra suction and take a tooth brush to remove thick
saliva from the roof of Debbie’s mouth. Krystal calls me to see if every
thing was ok and I told her this was not going to work. So I got Debbie
back into the jeep and her chair in the back. On the way home Debbie
was doing better. It was like Debbie did not feel comfortable a round
other people and this was her way of saying it. I asked Krystal what
does every one mean Debbie plays me like a drum. Krystal said when
I am a round Debbie depends on me to the keep her safe. Krystal
says Debbie can say some words but she chooses not to talk.
When nursing got here we had not got Debbie to bed yet but no
problem Debbie was still a sleep by midnight. To night before going to
sleep when I kissed Debbie’s forehead and told her good night she
gave me the biggest smile. After bedtime meds I knew when Debbie
woke up she would not remember what she did yesterday. It is an
endless circle but those smiles make it all worth while. To night when I
was rolling oxygen it hit me who would believe this would be are life 4
years ago. Some times I feel like I am some one looking in on some
one else’s life.
April 19, 2007
Jerrall-
Debbie only slept 5 hours with Ativan and until I woke Deb up at 5:30
am. I am sorry Bernice I know you could have stood me in the corner.
When I was putting Debbie in bed she had an oxygen drop which
caused great tone. I asked Bernice to get her Debbie’s meds while I
held Debbie down and kept an oxygen mask on her face. Even with
extra meds it took 1 ½ hours to get Debbie stable. Bernice asked me if
I was planning to take Debbie any where to night. I said no we have
every thing we need right here and I just had a refresh train coarse. At
the hospital I did all of the suction and watched respiratory do all of the
breathing treatments. To day was a hard day for Debbie pulse over a
100, a lot of tremors, red rash on right arm for the second day and
oxygen level around 90. Debbie had to wear an oxygen mask 3
different times today. I dc some new meds so I could tell which one
was causing the rash.
Jessica the case manager came today I wanted to up date her on
Debbie’s hospital stay and about more hours nursing because Debbie
needs more skilled care than Amber can do and I am only one person.
When I put a straw suction down Debbie’s nose some one else has to
hold her down and I do not need to even be in her nose.
I took Debbie to the bathroom early at 6 pm and then to her bedroom
to lay down for an hour with a oxygen mask on. Debbie is still jumping
but not as bad and stats are better. Now it is 8 pm and I will get
Debbie up to watch a little TV before we do a shower.
Today has been vary long and had to keep Deb breathing 3 times but
to night Debbie is so calm and content making today all worth it. There
is no way for me to know what it is like not to be able breath but what I
see Debbie go through each time it can not be a good thing. I do not
understand why this is happening so often now days.
Amber just got here so it is time for a shower and get ready for
Bernice@ 11 pm.
April 19, 2007
Jerrall-
Debbie only slept 5 hours with Ativan and until I woke Deb up at 5:30
am. I am sorry Bernice I know you could have stood me in the corner.
When I was putting Debbie in bed she had an oxygen drop which
caused great tone. I asked Bernice to get her Debbie’s meds while I
held Debbie down and kept an oxygen mask on her face. Even with
extra meds it took 1 ½ hours to get Debbie stable. Bernice asked me if
I was planning to take Debbie any where to night. I said no we have
every thing we need right here and I just had a refresh train coarse. At
the hospital I did all of the suction and watched respiratory do all of the
breathing treatments. To day was a hard day for Debbie pulse over a
100, a lot of tremors, red rash on right arm for the second day and
oxygen level around 90. Debbie had to wear an oxygen mask 3
different times today. I dc some new meds so I could tell which one
was causing the rash.
Jessica the case manager came today I wanted to up date her on
Debbie’s hospital stay and about more hours nursing because Debbie
needs more skilled care than Amber can do and I am only one person.
When I put a straw suction down Debbie’s nose some one else has to
hold her down and I do not need to even be in her nose.
I took Debbie to the bathroom early at 6 pm and then to her bedroom
to lay down for an hour with a oxygen mask on. Debbie is still jumping
but not as bad and stats are better. Now it is 8 pm and I will get
Debbie up to watch a little TV before we do a shower.
Today has been vary long and had to keep Deb breathing 3 times but
to night Debbie is so calm and content making today all worth it. There
is no way for me to know what it is like not to be able breath but what I
see Debbie go through each time it can not be a good thing. I do not
understand why this is happening so often now days.
Amber just got here so it is time for a shower and get ready for
Bernice@ 11 pm.
April 18, 2007
Jerrall-
Debbie woke up early today and got in her wheelchair by 7 am. I could
hear Bernice doing a lot of suction all night but I was so tired I could
not make my self get up. Last night was the same Amber came over to
help give Debbie a bath but went to sleep instead while Amber
watched Debbie until Bernice came. This morning Amber did OT
therapy with Debbie and Susanne. Debbie has been jumping a little bit
this morning but after clearing a mucus plug by her self while Susanna
was here Debbie calmed down.
Debbie has had a low grade fever all day around 100.5 which no one
at the hospital could explain. To night Brenda came a round 5 pm and
worked with Debbie. I took some time off and went to Krystal’s college
to sign some papers to allow her to live off campus next year. As soon
as I walked in the house Amber said Brenda and Debbie was watching
a movie and Brenda was talking to Debbie just like a friend. Debbie
works vary well with Brenda and Debbie looks forward to have a real
friend to interact with.
April 17, 2007
Jerrall-
This morning started with the sound of the pulse/ox alarm going off.
Debbie had dropped to 77% and Bernice was doing all of the nursing
work with meds and I was doing all of the respiratory work. It took 1 ½
hour to get Debbie stable. Then I got Debbie up in her chair to start
our day. No more oxygen drops the rest of the day.
Heather with nursing came at 1 pm for a meeting to talk about more
hours and Debbie’s hospital stay. Right now Debbie has a nurse from
11 pm until 7 am. But with my money almost gone and Debbie having
more often oxygen drops I asked Heather to check on a nurse from 3
pm until 7 am so I could go back to work part time. But work may not
happen because when Debbie has a breathing issue it take more than
one person to put a straw suction down Debbie’s nose. That is why we
went to the hospital Thursday night.
April 16, 2007
Jerrall-
Debbie slept 6 hours last and our day started at 5:45 am when Debbie
went potty. The morning was normal that included getting packed and
dressed for a Nero appointment. Amber came and picked us up at
noon because I can never remember what the doctor said. It is true
that you only hear what you want to hear.
The appointment went great Debbie was her self with no extra meds. I
wanted him to see Debbie at her base line. I told him about Debbie’s
meds cuts in December 06 and about the CT-SCANS [atrophy of the
brain stem and cerebellum]. He said he can not tell me anything in
only 2 visits and make no promises. I said that Debbie might need
botox to her neck and her Baclofin pump increased. He told me that
med adjustment need to happen first. I feel good about this doctor
and we will come back in 30 days.
In this new team there will be a doctor for there specialist only and no
general doctors or middle men.
Physiatrist
Pulminalogist
Urine Specialist
Nero Surgeon [baclofen pump]
Hemroyd
Bone Density and Mammogram
Eye Surgeon
Gastric peg tube
Ultra Sound Specialist
OT Therapist
Case Manager
Privet Duty Nursing
Oxygen Supplier
Peg Tube Food supplier
Home Health Nursing and Therapy
Ortho Carolina
Family Dentist
Each doctor will take care of each body part and meds for that part. I
have learned the last week about meds that keep the bladder walls
slick so bacteria can not stick and cause urine infections. Certain med
will keep spasm out of the bladder and reduce pain before having to
go potty. There are many meds to reduce tone and meds to reduce
storming. Meds to extend sleep and reduce excess saliva and
breathing treatments. This is a whole new way to look at brain injury.
Also it may be time to get another trac to increase depth of breaths.
Thru the internet I have learned so much from other families about
brain injury. These families may never know how much they help other
TBI families. Time for these families is little and is a real effort to
provide information.
When we got home Amber helped me give Debbie a shower and then
Brenda came to work with Debbie for 5 hours and really made the end
of a perfect day. I got Debbie to bed early she was so tired and went
right to sleep. About an hour later Bernice came and with all of the
doctor and med changes had paper work to last all night. Bernice has
become like one of the family. I can hear her talking to Debbie all night
long.
The worst thing about today when Amber left she gave me a lot of
paper work about ordering Debbie’s supplies and meds. Amber she
did not want to run the family business no more and be involved as
much Debbie. This is all ok I just hope Debbie’s accident does not
break up the whole family. Tomorrow I will have a lot of call to off set
this issue.
The power went off to night at 3 am and Debbie stayed a sleep
because of the air mattress she was laying on the bed frame. Bernice
called for me and I started my truck and let it run for hours because it
has a generator that can run 110 volt things. One special cord to
Debbie’s room and it was back up and running in less than 10 minutes.
April 15, 2007
Jerrall-
Today is Sunday and Debbie, Krystal and I are still at the hospital.
Debbie slept only 5 hours last night. Krystal slept on Debbie’s portable
massage table. This is my third night that I have stayed a wake all
night monitoring Debbie. At 4:30 am the tech came in to draw blood
samples. Then at 6 am the CNA came in and took Debbie’s vital
signs. By this time Debbie was so mad I had to get Deb up in her
wheelchair to be able to calm her down. Since we have been in the
hospital Debbie has had excessive tone and anxiety. A hospital is no
place for rest. The whole time here I have had to do all of Debbie’s
suction. We are here only for supervision and no nurse has the time
Debbie requires 24/7.
At 10:30 pm the doctor came in and said Debbie did not have any
urine infection and has been off oxygen and on room for 24 hours so
we can go home today. This is the best thing I have heard in days.
We were discharged at noon and had to stop at the drug store to fill
some new prescription. We got home at 1 pm and Debbie had to eat
and rest to be ready Brenda at 2 pm. I had to go to sleep and Amber
and Krystal worked with Debbie and Brenda.
To night Debbie went to sleep right a way ever since Brenda has been
working with Debbie there is no problem with Debbie being so tired she
goes right to sleep.
Debbie is so happy to be home half of her tone is gone and Debbie is
more herself. In front of Brenda Debbie lipped some word to me and
even gave me a kiss.
April 14, 2007
Jerrall-
Today they were able to get Debbie off oxygen. Krystal slept on the
portable massage table in Debbie’s room with me. To day while I went
to sleep Amber and Krystal gave Debbie a bath in bed and washed her
hair.
April 13, 2007
Jerrall-
It has been 35 hours since I had any sleep and I know Debbie is tired
and a where we were in different surroundings. Debbie was jumping
so much the doctors wondered if some thing was wrong the Baclofen
pump. Still all day oxygen is needed and pulse over a 100. Every one
is being so helpful and want to help but do not know how. Debbie is
still having hot flashes so when her hospital bed sheet got wet tonight I
had to get her up in her chair and change the bed linens at 3 am and
then get Debbie back to bed and then asleep.
This morning 5 doctors came to check on Debbie and did not stay long
but the lead Doctor said he would be back later to answer any
questions. It was almost 4:30 pm and on his own time but the best
news is that once the brain injury peaks other issues progress at a
slower pace than what I expected. All so told me how to take
preventive measures to prevent infections and what to look for in the
future. Debbie cognitive issues were caused from urine infections not
brain atrophy.
April 12, 2007
Jerrall-
I will never give up on Debbie, over the last forty year we have become
as one person. What she feels I feel and I can see in her eyes when I
am sad she will look at the floor and when I am happy she will give me
a smile. I more than love Debbie and can not even think of life with out
her. This journal is a real day to day life for me to reflect back on and
see where mistakes may have been made and to make Debbie’s life
the best it can be. This is the hardest thing I have ever had to do and
pray no one else has to live thru this. But this is not relativity and if
some of what Debbie has gone thru will help some one else then this
will be public knowledge to any one who wants to know the truth about
brain injury. I have got so many e-mails and even a phone call from
my mom about my last few posts. Even Krystal came over in the
middle of the week to check on Debbie. Every thing is as good as it
can be at this point and we are just going thru a lot of changes and I
hate change. I am learning more and more of how the system works
and making changes for the better but it is hard to fight everyone at
the same time. Debbie will always come first being my spouse I have
chosen to give up my life for now and stay 24/7 with Debbie to make
her recovery as much as possible. Debbie has a brain injury but also
a crushed lung on her left side and a spinal/ pelvis injury all at the
same time. I have had to keep Debbie alive every day for the last two
years. If not for my choice to fight at her side Debbie would have
chocked to death on her on saliva a lone time ago.
This morning started at 5:30 am with the pulse alarm going off and
when I got in the room the nurse Bernice was standing over Debbie
giving her a breathing treatment. I got Debbie up in her wheelchair
and started to clear her mouth of overnight saliva. I got 200cc in the
suction canister and then gave Debbie a 5 litter flow of oxygen.
Debbie was down to 85% at first and up to 98% after a 1 ½ hours.
April 10, 2007
Jerrall-
Today I took Debbie to her ultra sound appointment and every thing is
better than even the doctor. I did not grow up in the computer or voice
mail era so I went to the urine specialist office and the doctor was not
there but Debbie has a special appointment for 2:45 pm tomorrow. If
there is no urine problem then Monday when we see the brain doctor it
may be time for an EEG to rule out mini strokes. Debbie has stopped
doing what she was doing slowly over the last 6 months. Now Debbie
just sets in her wheelchair and does not inter react with any one, coma
in a chair. Even with less meds and every thing I do I am losing
Debbie. Suction has doubled and breathing treatments increased.
Amber and other people in Debbie’s life treat Debbie different not
touching her, afraid of her, or not even coming around and Debbie has
to notice. Medical people can see how I feel about Debbie and may be
they do not want to tell me the truth. Not knowing is worse and I
understand no one has all the answers. I can tell that I do not care
about anything any more and am obsessed with helping Debbie
alone. This is not good for Debbie or any one else.
Susanne called to night and made 2 appointments for this week to
work with Debbie. Between Susanne, Bernice and Brenda is all that is
left in Debbie’s life. Debbie has not stood on her feet for 5 weeks and
can not hold her head up for 5 minutes at a time. We only have one
chance at this recovery and I am praying another door will open before
it is too late to make a difference. I am trying harder than I have ever
tried to not be pulled down with Debbie but not getting out in public it is
the hardest thing I have ever done.
Amber is coming over tonight to give Debbie a shower and I know this
is some thing Debbie will enjoy she has so little choices in her life at
this point.
April 10, 2007
Jerrall-
Today I took Debbie to her ultra sound appointment and every thing is
better than even the doctor. I did not grow up in the computer or voice
mail era so I went to the urine specialist office and the doctor was not
there but Debbie has a special appointment for 2:45 pm tomorrow. If
there is no urine problem then Monday when we see the brain doctor it
may be time for an EEG to rule out mini strokes. Debbie has stopped
doing what she was doing slowly over the last 6 months. Now Debbie
just sets in her wheelchair and does not inter react with any one, coma
in a chair. Even with less meds and every thing I do I am losing
Debbie. Suction has doubled and breathing treatments increased.
Amber and other people in Debbie’s life treat Debbie different not
touching her, afraid of her, or not even coming around and Debbie has
to notice. Medical people can see how I feel about Debbie and may be
they do not want to tell me the truth. Not knowing is worse and I
understand no one has all the answers. I can tell that I do not care
about anything any more and am obsessed with helping Debbie
alone. This is not good for Debbie or any one else.
Susanne called to night and made 2 appointments for this week to
work with Debbie. Between Susanne, Bernice and Brenda is all that is
left in Debbie’s life. Debbie has not stood on her feet for 5 weeks and
can not hold her head up for 5 minutes at a time. We only have one
chance at this recovery and I am praying another door will open before
it is too late to make a difference. I am trying harder than I have ever
tried to not be pulled down with Debbie but not getting out in public it is
the hardest thing I have ever done.
Amber is coming over tonight to give Debbie a shower and I know this
is some thing Debbie will enjoy she has so little choices in her life at
this point.
April 9, 2007
Jerrall-
It so hard to believe went one door closes many other doors open if
only you have faith and believe in what you can not see or touch. To
night Brenda started 5 hours a day 3 days a week. She is not just
some one off the street and has taken months to make this work.
Brenda works for a special county fund for people like Debbie. I am
not that religious but Brenda is more like an angle. Debbie seams to
have a connection that I do not even have.
To night was Debbie’s first nights sleep in three weeks we finally got
the Atavan refilled. The nurses can count it but I will keep it in my
pocket the rest of the time. Last month the nurses used 30 pills in 10
days and that is a mouth supply. Bernice is still coming 5 nights a
week and has not gave up on Debbie when every one else has except
for Susanne OT. This is Debbie’s first week with no PT therapy
Speech gave up 5 months ago.
April 8, 2007
Jerrall-
Debbie and I spend Easter day at Helen and Gerald Callahan’s. They
are the only two friends we have left. Debbie did great with low tone all
day and not saliva issue. Tonight was shower night and it was so good
to have Bernice back. Debbie got up at 4 pm jumping and I got her up
in her chair at 5:30 am to start her day.
April 7, 2007
Jerrall-
I know Bernice can not work all the time but I sure do not look forward
to the weekends. Tonight I knew the nurse form the first week back in
January 07. She is over quantified for Debbie and a great nurse. But
Debbie is not like everyone else and I am told that I am the best doctor
Debbie has. I must have been feeling lonely so when I got Debbie to
bed I laid down with her instead of putting on her braces. I must have
fallen a sleep and the nurse was late so Krystal tube feed Debbie over
the top of me with out waking me up. When the nurse came in the
room I sensed her presents and woke up. We got Debbie braces on
and Debbie was a sleep but her stats were not go and a rising pulse. I
never go to bed until Debbie is stable even if it is three o’clock. It did
not take long for Debbie to wake up and the nurse did not know what
to do. I told the nurse what meds to get me with not an argument, and
every one knows how much I love Debbie and would not hurt her and
write my on text book. Debbie is the only person they know the
Ambien wakes her up. While the nurse was gone I got all of Debbie’s
braces off and Debbie all clean up. Debbie went to bed jumping
because every 2 hour before she potty this is what happens and meds
do not change anything. After Debbie went we started all over and
every thing worked out. Next Tuesday I am taking Debbie for ultra
sound to check for stones and the whole urinary tract, bladder and
kidneys. The bladder meds we just started are making no difference.
As of April 9 we will do a breathing treatment at lunch and at bedtime.
And just have prn twice a day. The last two week I have been suction
1300cc of secretions and night has only had 10 to 12 suctions needs
all night after there breathing treatment. Even a husband can tell a
noon treatment needs to be added. This must mean Debbie’s lungs
need rechecked soon. As time passes in Debbie’s life the lungs will
become a major issue.
All so I want to check the 16th with the brain how fast dementia will take
over. I can see sign of dementia on set. I deal with so many people
and there are only one spoke of the wheel I do not think any one sees
the whole picture.
April 5, 2007
Jerrall-
Debbie did not sleep much again last night and I can tell Deb has been
extra tired during the day. When Debbie looks tired I have laid down
on one of the mats with her and she has gone asleep with her head on
my arm. If I try to move Debbie wakes up so we both take a short nap.
The dentist says Debbie’s teeth are in great condition but they are
fractured at the gum line. In the past 4 years they are tilting inward
except for the upper eye teeth. Today is the first time I have seen
dried blood on Debbie’s teeth from her lips rubbing her eye teeth. I
have kept everything clean and the lips waxed but still I see where the
lips are rubbing. Debbie has had a temperature of 100.5 on and off
the last 2 weeks since the pic line has been removed. I took Debbie
last week to have her lungs x-rayed and blood work done and every
thing looked good. Debbie right arm has been warmer than her chest
for a few days but there is no sign of any bloods in Deb’s right arm. I
told nursing but they have not said anything bad. All day Debbie has
been jerking and drawn and the peg site look like Debbie has been
pulling on it all day. Debbie may have thought she had a good day but
it has been hard to watch Debbie so upset for the whole day and meds
did not make a difference.
When we have days like today when nursing comes at 11 pm and I get
to lie down it take about an hour for me to be able to go to sleep and
then I find my self getting up every 2 hours to check on Deb. I can not
imagine what our next day beholds.
April 4, 2007
Jerrall-
The last time I heard Debbie’s voice was 4 years ago today at 8:05
am. Debbie has gone thru all the stages of coma and now today it is
about reputation, reputation and reputation. A long this journey
Debbie has picked up a respiratory issue and a urine issue. As the
days go bye I see Debbie more a where of her surroundings and more
weakness in her muscles. Atrophy is the worse part of a brain injury
like this. Debbie is slowly disappearing right in front of me and I can
not do anything about it. We have had a lot of good times in the 4
years and would not take anything for them. No one can say where
Debbie will go from here or how long it will take. I live all on faith and
take only one day at a time. It is noticeable that mostly I stand alone
with only Debbie at my side.
April 3, 2007
Jerrall-
This morning started at 5 am. I heard the pulse ox alarm go off for
over 10 minutes and the nurse did not shut it off. When I checked on
Debbie she was awake sunk down in the middle of her bed and a lone
with all of her braces still on. I got Debbie up in her wheelchair and
she calmed down. I keep telling nursing about this and no one is
listening to what I am saying, maybe one day.
Debbie has been extra calm today with out extra meds. About 1 pm
Debbie was in her wheelchair and started jumping for no reason. I
took her to the black mat and once I laid Deb down she went potty and
the jumping stopped. Tomorrow we go to a urine doctor for our first
time hopefully he will have some ideals.
Today Brian the PT came for his last day he is out of ideas and does
not think Debbie will get any more use out of her legs. No one has the
answer or the time that is needed. Today is a sad day it seams like
every one is giving up on Debbie all at the same time.
Tonight will be Bernice’s first night back for the first time in 4 days.
Today I have had to give Debbie 3 extra breathing treatments because
of the pollen.
April 2, 2007
Jerrall-
Last night Debbie slept great and even until 9:30 am which is a first.
After 3 hours sleep the last
Susanne Debbie’s OT came today and said she wanted to resert
Debbie alone. There will be no more PT or Speech. Until out patient
therapy.
Today at 5 pm I had my first---------- at rehab.