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Jerrall-
Last night Debbie had a decline in oxygen stats. Since Deb has been
home oxygen stats have been great and no suction needed. So I
knew something was different so this morning Amber called Primary
Care Doctor and home health nurse. Both said take Debbie to the ER
and see what is wrong and also get pic line put in so we could give IV
antibiotic at home instead of going back to the hospital for 10 more
days to treat a urinary tract infection. Amber helped me with Debbie
and it took 8 hours at the ER.
Thank you Dr. Ramsey for making all of this work today. At first
everything checked out ok but the urine. The ER saves life’s when
first injured not tbi patients 3 ½ years after the fact. I was told that
Debbie’s urine may just be a host or colony because of Debbie’s
medical history. Being with Debbie for over 40 years I knew that was
not the issue.
I felt like nobody was telling us the whole truth. 14 days ago Debbie
had a urine sample taken and it took this long to let cultures grow to
know how to treat the infection. This is the first time I have ever heard
of the only treatment were IV’s. Also we were told what drugs were
needed but Debbie will have to go back to the hospital for 10 days or
we could get a pic line and treat Deb at home our self. What we did
not know it would cost $1020.00 for the meds and insurance will not
pay for them unless Debbie goes to the hospital. To have Debbie at
home it is worth the money. Are the Doctors not telling us the whole
story or was it just the money issue. I have seen if they think you can
not pay then a needed solution is not mentioned.
I saw Debbie’s urine in the craftier tube and knew this was new and I
don’t understand how bad it is but there was debris growing in the
tube. I guess we will know in ten days if this meds works. This pic line
enters Debbie’s right arm and goes all the way to Debbie’s hart. This
is a serious line and can stay in for 6 months. I pray we only need it
for 10 days. This med is only available from the hospital so why does
Debbie need this med and why are we at home learning how to use
IVs. We are told some but I feel the whole story is not on the table.
Still it is better for Debbie to be at home but Amber and I are both so
tired this is a five people job. Not to mention changing Debbie’s
regular meds from therapy mode to pain mode to save her life.
Tonight Debbie’s tremors are worse almost like one constant
seizure.
Amber-
Well this morning mom was behaving almost like she did when we took
her to the hospital a few weeks ago. The ER put in a pick line in her
arm going to her main artery. This is so we can put antibiotics in it to
get her feeling better. There is only one antibiotic that will treat this
infection. We will do this for 10 days and see how she is doing. After
that a nurse can remove it. Even though this sounds risky, we would
rather mom stay at home verses 10 days in a hospital again. She
hated getting this in, they had to try both sides before it would work. I
hope she feels better in the morning.
August 30, 2006
Amber-
Tonight we went to the mall. There were about 4 people getting on
and off the elevator. Some wanted to go down and the others wanted
to go up. They turned and asked us (me, mom, and dad) if we were
going up or down. MOM POINTED UP. She told them we were waiting
to go up. How cool is that? Yeah
August 29, 2006
Jerrall-
Deb did not sleep at all last night. I sleep in her bed for a couple of
hours then took off one side rail and push my bed up against hers
and tried to get some sleep my self. Debbie was happy to just lay
there as lungs she could touch me. Amber says Deb plays me like a
drum.
Today I met a great caregiver only time will tell if she is the one. With
her experience I learned so many things.
PT Brain is not happy with me carrying Deb everywhere instead of
letting her put her feet on the floor for transfers. I know Brain is right
but it is so hard for me to change since when we started Deb was
asleep in a coma.
OT was working with Debbie and through hand signals Debbie was
wanting AnnaMarie to put her hair up in a pony tail
Deb is starting to notice things more and more of her environment.
August 28, 2006
Jerrall-
Today is Monday and Deb has no therapy today so I adjusted Deb’s
meds so she could sleep in. A new caregiver came today for a few
hours and I can see this is going to be impossible Amber is the only
one I trust with Debbie’s life. The house is so different without Krystal
at home. Tonight Amber said she was going to fix dinner and I said if
she would be with Debbie I would fix dinner. The only problem with
out Krystal we had way too much food left. This is going to be a
learning curve for me.
August 27, 2006
Jerrall-
Today is Sunday and a hard day for Debbie even with extra meds. It
is so hard to feel like there is nothing I can do to make the day any
easier for Debbie. I have learned nothing stays the same day to day
with a brain injury.
Faith is a word people say all the time but do they under stand the
commitment that comes also. Every day of my life I live on faith and I
always remember the verse “God will not put more on you than you
can bear”.
Only by Faith has Debbie made it this far one day at a time. I have
heard people talk about faith, but I have never seen someone live by
faith.
After the last two months my faith has been push as far as it will go.
Faith gets Debbie up every, and faith gets Debbie to bed every
envying with no promises.
Love is what keeps me from giving up; getting two hours sleep at a
time and to be able to see past the present.
With all that is going right I do not know what the proper word is for
when I can not stop crying, feel that life is over and what could I have
done wrong for Debbie to pay such a high price.
I know a lot of people go through these same feeling but that does not
make this journey any easier. To see Debbie shake everyday or give
Debbie meds that make her calmer but put her in a coma state. It is
so hard to know if my decisions are what are best for Debbie and not
selfish for me.
I heard the word comment last week and if it was not for every ones
support all of this would not be possible. You will never know how
many good people you meet in your life until some thing like this
happens to you.
Thanks everyone for your support.
This afternoon while Debbie had her tube feed lunch I turned on the
TV and a movie was on Serendipity. We saw this movie when it first
came out at the theaters. What was funny then it is how Deb thinks
and believes. After Debbie saw the movie Deb also found a beach
house at the Outer Banks of North Carolina so Deb rented it for a
week in April 2003. In fact Deb was getting packed and looking so
forward to have a little time off. Debbie’s accident was 4/4/03 the
Friday before we were to leave. While Deb watched this movie with
out extra meds did not have any tremors except in her mouth. It is
funny the way thing work out.
Tonight just before Deb’s shower and bed time we was sitting together
and Deb’s left arm fell off her arm rest and started shaking
(myoclonus) which I have never seen before. Debbie can not tell me
what is wrong but I see her holding her left arm with her right arm and
rubbing it. It appears to be waking up and Debbie is getting feeling
back on parts of her left side. Good thing, bad thing, it is just
different.
August 26, 2006
Jerrall-
This morning Debbie’s oxygen level was 94 and pulse 100. For the
past 3 days I have been watching Deb’s oxygen stats lower and her
pulse go higher. All of this is normal for someone else, but not normal
for Debbie. We have to wait a month to hear about Deb’s lungs which
I believe are normal. But the elevated pulse I think is from the bladder
infection or pain from some where. I let Amber sleep in this morning
but when she came in the living room and saw the oxygen tank and
Debbie connected to the pulse/ox monitor I wonder what went through
her head. We did not talk much I just said I need to get some sleep
for awhile let me know if we need to take Debbie to the ER.
When I woke up Amber said Debbie just had a mucus plug that took 3
hours for Debbie to cough it up. This is great news but there is
something not right time will tell, infection, breathing treatment med or
unknown pain. I wanted to wait to tell the girls until I see more change
in stats.
Tonight I took Debbie back to the court yard at the mall to watch the
water fountain. Deb seem to enjoy herself I just wish we could
communicate with each other. Debbie has so little choices these days
I can only guess what make a difference in her life.
Amber-
Mom did great today. Her and I worked on the hand bike. Dad fixed it
where it works great now. Mom did 28 rounds on her own with her
right hand and then did 15 more rounds. After this she put 3 golf
balls into the bowl. On the second one she pointed where the ball
should go instead of taking it out of my hand. I said you are write but
you must put it there. She took the ball and put it in the bowl. She
was calm, on, and had control.
August 25, 2006
Amber-
Mom had another great day. Today was the first time I felt mom push
her left arm up on the exercise we do. She also brought her left arm
down to her chin while lying down with control. Her left arm is really
coming on line. She moved her thumb a short distance, but it was as
soon as I asked and several times. She wiggled her left fingers 2
times. Later she did a 7 second stand in our sit to stand transfer. It
felt wonderful. We practiced the hand bike and mom put her right
hand on the pedal all by herself 2 out of 6 times. Mom is continuing to
do the things she has done over the past few day and then some new
things. Usually mom does something new and it takes a few weeks
before we see it again. This week she does something and does not
loose it.
August 24, 2006
Jerrall-
Debbie did not sleep again last night it was worse than ever before
thankfully I was not alone. Every thing was like normal for the first
hour and it looked like Debbie would go to sleep. Then Debbie went
wild swing her right hand and trying to get out of the bed. While I held
Debbie down Amber got Debbie extra meds. The meds calmed
Debbie down but Debbie never went to sleep. I have learned with a
brain nothing stays the same and you have to be ready for any thing.
I spent the night in Debbie’s bed just holding on to her. I am some
one that had a 5 year, 10 year plan and it was always with Debbie
together. Now we will still be together but what is important has
changed.
Debbie has done so good breathing and suction since she came
home from rehab then today at 5 pm some thing is different stats are
lower but ok and Deb is panting and has more tone. To me it looks
like a Nero thing no doc will give an option because so little is know
about the brain. It took until 7 pm for Debbie to get over what ever
was wrong. No suction was needed we just lay down on the mat and I
held on to Deb. No extra needed to make it through this issue. When
these 2 hours had pasted Debbie was not as on and not able to turn
her head. It is almost like the wires in Debbie’s head are trying to
reconnect. When Debbie does not sleep then the next day she is
more cognitive. As the switch turn on and off there are signs to watch
for. Debbie does not need over sedated and the other side of the
coin we do not want her to have a heart attach.
Today was a great day for Debbie she took her glasses off and
washed her face by herself. OT or I have never seen this before.
Deb and I look through 3 photo albums. Deb wanted to hold some on
the pictures. This has never happened before. PT had a great
session Deb even has more tone in her left leg. Brian is still talking
outpatient therapy so Deb would have access to more equipment to
help Deb learn to stand faster.
I feel so lost today after the experience of the last two months. To
know what is best for a brain injury persons recovery it requires 24/7
supervision. Doctors, nurses, caregivers, or any one that has to give
a report from one shift to the next does not have enough time to cover
all the issues. I have taken off work for 41 months and have had help
from every one but what is the next step. Debbie comes first always
but the Lung doctor asked me yesterday how I make all of this work
and I did not know what to say. It takes one day at a time and great
sacrifice. My days go so fast I hope Debbie’s do.
August 23, 2006
Jerrall-
Debbie only slept 3 hours last night but Deb was not tired and did not
take any naps today. This morning when I got Debbie up for about 2
hours Debbie kept holding on to me. It reminded me of when I
dropped Amber off her first day of school. Some thing is changing
because I have never seen any thing like this from Debbie.
Sharon came today for a couple of hours to meet Debbie to see if she
could help me with Debbie for a few hours in the mornings. Who
knows where this will go I have not found any one that has worked
with some one like Debbie.
At 11:30 am Amber and I took Debbie to get Debs baclofen pump
refilled. The nurse said Debbie was looser than last time and even
with the oral muscle relaxes DC.
This is also different but I do not think it is a good time to make any
adjustment at this time.
At 1:30 pm Debbie had a speech lesson and Leila said she can tell a
difference in Debbie since she has been home for the hospital.
Today was the first time I have seen Debbie give a thumbs up.
At 3pm Debbie had appointment with a lung specialist. This was my
idea to have some one out side of the brain injury circle to give me an
unbiased opinion about condition of Debbie’s lungs. This is Debbie’s
weakest link. A brain injury does not kill you it is but organ failure
can. It hurt me to see because Debbie can not communicate with him
there was not much he would say or due. But at lease he gave me a
plan and said he would take the case and follow up with new x-rays in
30 days. This time with Debbie has been great but other people tell
me to get on with my life. I guess they don’t see life as I do.
Tonight has been calm and Debbie watched a movie. What a day!
Amber-
Mom had a good day. She was so on. She did a thumbs up for the
receptionist at the doctor’s office. When dad asked her to shake his
hand at another doctor’s office she did right in front of the doctor.
Then the doctor asked her to shake dad’s hand if she understood
him. She whispered real loud “what”. It was so cute. The speech
therapist was thrilled again today. Mom put the popsicle stick in her
mouth again on her own and gave it back when she asked. This
happened over and over, several times. Mom responded to her
questions with a clean yes or no. A lot of the time mom was making
sounds, we could not make out. She was so close to saying words
out loud clearly. She had a loud whisper and said several words at a
time. She was going so fast we could not make out the words. This is
wonderful even if we can not understand her yet, it is the biggest step
forward as far as talking. These past few weeks have been hard and
some what difficult, but some big changes have occurred. This may
very well be mom’s big chance she has been waiting for. She seems
so close to talking and walking. We can not rush her, but she is
getting so strong so fast. It is like she has come even more alive. It is
exciting to see her becoming independent. Along with this joy comes
some emotions though. Letting go enough for her to do stuff on her
own is hard sometimes. You get used to doing everything for
someone and when it comes time to do less you do not know what to
do with yourself. I am learning this with my sister to. She is not my
daughter, but going through the college this is still hard. Letting go,
not being cool anymore, friends are more interesting, and knowing
she is out there in the real world. I do miss her, but I have to let go.
She is growing up, I still remember what I was wearing the first day
mom and dad brought her home. How did time go by so fast? At 6
pm tonight mom and I did some exercises. She did a great sit to stand
I felt her right leg push up 2 times. When she laid on the mat she
grabbed my hand and lifted herself up, I said do you want to sit up.
She shook her head yes, so I held her hand to let her lift up. She was
sitting on the mat, then she wanted to lay back down. She was telling
me what she wanted to do.
August 22, 2006
Jerrall-
Debbie slept good last night but was up at 6:30 am ready to start her
day. Only five and a half hours of sleep is more like normal. Today
has not been good or bad Debbie just has not wanted to work with
anyone today. OT and PT both came today and the nurse also. With
both girls in school the day goes to fast and Debbie appears to notice
I do not have as much time to spend with her. Tonight after the
shower when I got her wheelchair in the bed room Debbie raised her
arms and grabbed my neck. Deb was in a panic and afraid we have
never seen behavior like this before. Hope Debbie has a good night.
August 21, 2006
Jerrall-
This morning we had to get up and get ready to do a check up visit
with the doctor that sewed Deb’s left eye lid. (Ophthalmology) He
said everything was great and Debbie had some vision still in her left
eye. In 3 months Debbie goes back for another check up. The nurse
and Doctor both noticed how alert Debbie was and made a comment.
Debbie would not respond to their questions but since 30 days in the
hospital Debbie does not trust anyone in a white coat.
Tonight I asked Deb and Amber if they wanted to go to the mall it is
only 2 miles down the road. So off we went for about 3 hours. I
watched Debbie with out her seeing me and Debbie was vary a where
of here surrounding. When we got home we got off to bed but Debbie
did not go to sleep until 1 am. But at least once Debbie was a sleep it
was a good quality sleep with no needed oral suction.
Amber-
When mom did her flashcards she whispered very loud. It was the
loudest I have ever head her whisper.
August 20, 2006
Jerrall-
Debbie slept great last night with these breathing treatments every six
hours there is no need for extra oral suction. After such a great week
I let Deb sleep in to day until 1 pm. When I did get Deb up she went
back to sleep for two hours in her wheelchair this is not normal.
Today is Sunday and Krystal came over at 9 am with two rib eyes.
Like I used to do I cooked her and myself some breakfast. Steak, egg,
and beans and we sat in the breakfast room table and ate together.
This was a great break in my day but I know it won’t happen often.
Debbie woke up with extra tone and not on or a where of her
surroundings. With extra meds to help with the jumping it made Deb
vary sedated. I worked with Deb but nothing would stop the jumping.
Gerald and Helen came over for several hours which was another
great break in Debbie’s day. When Amber came in the three of us did
a shower and it seamed to help calm Debbie down.
August 19, 2006
Jerrall-
After moving Krystal into the dorm yesterday this morning I needed to
catch up on my sleep and get ready for another long weekend.
Amber spent the day with Debbie. Monday thru Thursday last week
was the longest and most Debbie has been on. Which means Debbie
did not sleep more than an hour each night. Friday and Saturday
morning Debbie slept in until afternoon. About 5 pm Amber and her
friend left for the week end. With out Krystal at home any more things
sure are quite. Debbie is on tonight but she does not want any one to
know or bother her. I saw Amber’s friend look at Deb and I while we
was watching TV and when I turned the show he saw Deb hit me a few
times. But what was funny he went around the long way to the door
as not to see us. This last week Debbie has been vary angry and hit
OT once and me several times and even her self one time when her
leg would not do what she wanted.
Tonight Debbie and I watched a couple of movies. Castaway with
Tom Hanks was one of them. We worked out on the matt a couple of
time and in all it was a good night. I started to get Deb ready to bed
at 10:30 pm but I for got how long it took alone. Debbie is used to 2-3
people and Amber says I am getting slower every day. Tonight is not
shower night so wash under arms, wash face, oral care, change into
sleeping shirt and that is before Deb gets into bed. After Deb is in
bed she gets meds and formula and clean peg tube site and new
pad. Bivalve cast goes on left arm and Oxygen sensor. Left leg get a
foot positioner and Left leg gets knee immobile brace. Deb right does
not get anything she has almost full use of that arm. If we ever need
to check something always from the left side or watch out for that right
fist. Now when every thing should be done it is time to give Deb a
breathing treatment for 15 minutes. Last thing is to put drops in both
eyes. Let me say when there is two people one has to hold on to Deb’
s right leg on hand because she does not just lay there for all of this
time. So we started at 10:30 pm and finished at 12:45 am. By now
Debbie is ready to go to sleep and me too. At 4 am Deb gets her next
breathing treatment but the last week she has stayed a sleep.
Amber-
Mom helped me do sit to stand well. When she sat on the edge of the
mat she put her hand down to balance herself without me asking.
She then lifted her right foot on her own to put it on the step box for
me. She held onto the potty chair armrest to balance herself.
August 18, 2006
Amber-
Mom slept in late this morning. When I got mom into her wheelchair
she was very helpful. We watched a movie together. Krystal and
Jerrall were moving her into the dorm.
August 18, 2006
Jerrall-
It has been weeks since I have had a moment to myself or been able
to make any real notes. When I look back at July and August 2006 I
want to remember how far Debbie has come and where she has been.
Just five weeks ago I was asked to make choices about Debbie’s life
with out the girls knowing Debbie was either going to get better or no
one would want to live like this. Since then I have talked to the girls
and I think they both understand. Still none of us really believe when
we tell Debbie good bye that this could be the last time we would ever
get to talk to her. This is the same case with healthy people also. But
enough of that.
Debbie has done things this last I never thought possible. This whole
change in Debbie’s world; food , meds, surroundings all at one time
has brought out a part of Debbie none of us have seen. I know there
are a lot of people out there Debbie does not even know that are
praying for her everyday. Debbie is getting so much better no one
knows why. But if everyone can put Debbie back on there church
pray list or share with some one else there is power in numbers.
Debbie always told me what does not kill you will make you stronger.
Thank You for all of your support Jerrall
August 17, 2006
Jerrall-
Deb did not sleep much last night. Amber said this morning Debbie
was setting up in bed when she came in the room. This morning Deb
has a 10:30 am appointment with primary care. The nurse said
Debbie was watching everything move she made this was a first for
her. Everything went great then as soon as we got back home a
health nurse was there to get a urine sample. Before she left OT
Susanne came for a session. Debbie had 10 minuets to eat lunch
then PT Brain came to do a session. Debbie did great all day but it
has been a very long day.
Amber-
Today mom held her head more straight today since she got sick 6
weeks ago. Even OT mentioned it. Tonight mom watched part of a
movie with her head rest off. Mom did not sleep another night, but
she was so on again today. This afternoon OT came and worked with
mom. She asked mom to pick up shapes and put them into a box with
holes in the shape of the blocks. Mom did great, she was slow at
first. Mom took the hollow circle piece and turned it upside down and
put it to her lips as if to drink. We said it is not a cup. So she reached
over to Susanne and gave her the cup to fill. We said ok, you put
these in and we will get you some water. That minute she put all 3
pieces in one after the other. I got her some water and she sipped a
bit. Bryan, the PT, came after and mom practiced sit to stand with
him. She did a good job, best since the hospital visit.
August 16, 2006
Amber-
Mom did not go to sleep last night, so you know what that means, she
was super on today. We got up together and she helped me do sit to
stand into her chair. She was smiling and interacting perfect. It was a
calm day and things went well. Speech came today and mom really
showed off for her. Mom shook her hand and did everything she
asked. She closed her lips tight every time the speech therapist put
the tongue blade on her lips. One time mom took it from her and did it
herself. Mom put the stick between her own lips and closed, when
speech asked for it back mom took it out and handed it back to her.
With a wash cloth mom wiped her mouth when she needed to. When
Leila the speech therapist asked for it back mom handed it to her
each time. Leila gave mom a thumbs up for a great job and asked
mom to give one back, mom did. Such a wonderful time, we had fun.
Mom and I looked at magazine pictures that Krystal cut out and mom
mouthed some of the items.
August 15, 2006
Jerrall-
Yesterday was one of the top three days in my life. After having the
energy to get up on my own at 4 am and the joy I get by making a
difference in Debbie’s life every day. All of that changed in the blink
of an eye. Debbie has been changing over the last six week and you
would think that would make things better. Instead this morning when
Debbie woke up she fought with me for over an hour over every thing
I did. I knew Debbie was going to get dressed and be ready for
therapy today I did not know what we would have to go though. I was
so broken down by the time I had Debbie up and ready I took Debbie
in her wheelchair into Amber’s bedroom. Amber was still a sleep
which I was proud to get Debbie ready alone but Debbie was stomping
her right foot on her wheelchair foot rest like never before. Amber
looked at me and then at Debbie and said what was wrong. If Debbie
could talk no telling what she would of said. I was so tired by now I left
Debbie with Amber, did not say a word and went back to bed for five
hours.
Amber and Debbie had a great day but Debbie stayed mad at me all
day. It was not until Debbie had a shower and we got her to bed
would she look at me. We spent the whole night holding on to each
other not moving or saying a word just letting Debbie know she is not
a lone. Debbie never went to sleep all night long.
Debbie had PT with Brian and he commented Deb got tired easier but
was more a wake than he had ever seen.
Nursing stopped by and said Debbie was doing great.
August 14, 2006
Jerrall-
This morning started early this morning at 4 am time for meds.
Debbie slept great all night and is still a sleep during her 5 am
breathing treatment. Deb slept right through it, I guess it is must be
relaxing. I hope today will make a big difference in Debbie’s life.
Amber-
Mom had a great day of therapy. OT came first and she had mom
practice sitting balance while doing other things. Mom did a good job
keeping her balance with little help. Susanne had mom brush my
hair. Mom had help the first time and the second time she did it
almost on her own. After 25 minutes mom laid down on the mat and
they worked on her left arm and thumb. Mom would pull (a bit) down
on her left arm after Susanne lifted it over her head. When it came
time to practice moving her left thumb mom was ready. She moved
her thumb several times. She moved her pinky 2 times and continued
moving her thumb. Her left thumb is moving much better than I have
seen in a year. Speech came later on in the day. Leila was very
happy with her session with mom. Mom kept great eye contact and
looked up at the yes sign and down for the no sign. She put the
tongue depressor on mom’s lips and for the first time for her mom
closed her lips on the stick. Mom did this several times and kept her
lips closed tight. We were all so proud.
August 13, 2006
Jerrall-
Krystal came over and spent the night at home. Next Friday Krystal
will move into her dorm on campus. It was great to see Krystal.
Debbie and I were watching TV and Kris wanted Deb to do something
different. So they tried finger painting at the dinning room table.
Debbie was interested but her right was so tight it was hard for her to
reach out. Still they made three or four pictures. It lasted about a ½
hour but was fun to do some thing different. Then Deb, Krystal and I
wanted to watch a movie that went off at midnight. Debbie fell asleep
about 11:45pm which was ok. Debbie had been making me nerviness
and it was a relief to see Krystal. Before Amber left for the weekend
she helped me get Debbie standing. The first time was for 15 minutes
and once again for 10 minutes. Debbie’s feet looked great but after
not standing for a month we do not need any blisters. Debbie came
home from rehab Monday and this is my first weekend alone with
Debbie. Everything is ok but Debbie has been acting different since
we have been home. It will take a little while to learn the new Debbie.
We went out on the screen porch around 5 pm and Debbie had her
dinner. But when we came back inside around 6:30 Debbie got very
upset. Shaking her fist in the air, turning from side to side in her
wheel chair Debbie was trying to tell me something. It was like not
having a choice in her life when, what or where was vary upsetting. I
asked if she was ready to go in side and Debbie would not answer
me. Again when Krystal got home I was changing Debbie’s pants
while Debbie was lying on the mat and again for no reason Debbie
started swinging her fist in the air. I have to find out what I am doing
wrong and fix this problem fast. OT said last week she saw this
behavior one time. Debbie has never got upset like this before. Again
thanks Krystal I was running out of ideas.
I have time to make these notes because Debbie is still asleep this
morning. It is 10:30 am and this is not like Deb either. After spending
the last 4 weeks in the hospital I will set here and let Debbie sleep as
long as she needs to.
Amber-
Mom stood on the standing frame for 9.5 minutes and then after a
break she stood 7 more minutes.
August 12, 2006
Jerrall-
DEBBIE you are amazing and full of surprises everyday I am a very
lucky man to find a girl like you. Some thing new has happened in
Debbie’s life in the past five weeks.
1] no need for oral muscle relaxers and arms are still loose
2] no need of Benadryl or extra oral suction
3] no need for scopalomin patch on neck saliva is under control
4] no need for Zertac, secretions are right thickness
5] no need for Propranolol blood pressure stable
6] no need for stool softeners at this time
7] no need for extra oxygen
I am not a doctor but this change all at one time has to mean some
thing is different.
Last night it was so good to see you taking such deep breaths as you
slept. A lady never snores but I have not heard that deep of breaths
in 6 or 7 weeks. At 4:30 am this morning I gave you a breathing
treatment you were taking such deep breaths and I wanted to make
the best of it. It sure is good to be back home but it will take me awhile
to get used to the quite again.
August 11, 2006
Jerrall-
Last night we got Deb to bed by 10:30 pm but she did not go to sleep
until midnight. Deb was calm with a pulse in the lower 70’s so I know
Deb knows we are back at home. For the last 4 weeks in the hospital
at night Debbie’s pulse was never below 80. Debbie only slept from
midnight until 2 am. I noticed a different breathing pattern so I
checked her pants and she had woke her self up and went # 1. By
3am I had Debbie back together again but it took awhile to go back to
sleep. I made a new med schedule and at 4 am Debbie gets .25 mg of
klonopin. Still Deb is not asleep at 4:15 am so I got in bed with her
and Debbie went right to sleep. It felt so good and it has been a
month, I went to sleep also. When I woke up, it was 7 am and Deb was
still asleep. I guess Debbie wanted some security she could touch. At
7:30 am Deb went # 1 again and woke herself up again. I wonder how
long it will take to get the bladder muscle stronger since the craftier
has been removed. I hope we can stay in the routine of starting the
day early like we have been doing the past month.
Amber has been working with Debbie in the mornings so I can get a
couple hours of sleep without having to listen for someone breathing.
Debbie has been calm today. Susanne, the OT came at 3 pm to work
with Debbie for an hour. Susanne said Debbie was following
commands but gets tired sooner since she has been sick. Today a
nurse from another agency came and filled out paper work for Debbie
to have some other support five days a week. This would be putting
what therapists teach into a day to day application.
Debbie is doing so much better with out all of the not needed meds.
Tonight is shower night and no therapy tomorrow so no hurry to get to
bed.
Things are getting better around here so Amber will keep up on her
updates.
August 8, 2006
Jerrall-
Debbie has been home for 30 hours now. There is no place like
home even if only for a couple more weeks while the four of us can all
be together. Krystal will move to the dorm 8/14/06 and Amber starts
her school a week after that. With everyone getting older and starting
their new lives on their own I have really noticed how much our girls
have grown up.
When we got home yesterday it was like the last month had never
happened. When it was time to go to bed Deb went right to sleep but
only for an hour and a half. When Deb woke up her oxygen level was
92% which is low for Debbie. I just laid her oxygen line by her pillow
and Debbie did fine the rest of the night. Debbie never went to sleep
but was calm the rest of the night.
Today was a normal day also but Debbie was more on than normal.
The nurse and OT Susanne came today to reevaluate Debbie and
everything was fine. But when Debbie was ready for bed it was like
never before. Debbie was kicking and hitting and wild like I had never
seen her. It took regular meds and 10mg of Propranolol to calm her
down.
Amber-
Mom had a hard time going to bed tonight. She was jumping and
having a hard time. All of the things that are usually wrong were not,
this was new. We tried everything; once she calmed down she slept
late into the morning. She seemed to have a cough all night. This
hard time seemed to last for hours. We got into bed with her and
made sure she knew she was not alone. Dad suctioned mom when
needed and I was in bed with her. I feel asleep holding her hand. I
felt like I did when I was 7 and would go to bed telling her I was going
to make a mold of her hand to keep all my life. She always smiled
when I would say that. I love her so much and it hurts so much to see
her feel bad. It was hard to let go, but when she was asleep I had to
lay down I could not keep my eyes open. The next morning I lay down
in dad’s bed and watched her sleep. I thought of all the old times
when I was little and how wonderful mom is. My favorite time was
when mom, dad, and me (Krystal was in mom’s tummy) we camped for
months and we were all we had. I loved having my parents with me
and we had fun. I slept holding both their hands.
August 9, 2006
Amber-
Mom slept in this morning. She woke up alert and ready for the day.
Mom did not have any therapist come and visit, but her and I
practiced by ourselves. We did a speech class that went very well. I
had mom keep her eye contact on a picture while I moved it left to
right, back, up, and down. She had no problems with this activity.
When we did the flashcards mom whispered each one. She did not
hesitate like last week when I asked her to close her lips on the
Popsicle stick. She held onto it 3 times for 7 seconds each. Her sit to
stands were good today as well, 5 out of 6 were great.
August 7, 2006
Amber-
Mom and I were practicing sitting balance and I hugged her. She
wrapped her arm around me, when I squeezed her harder she did the
same to me. Krystal sat down beside her and mom leaned over to
Krystal’s shoulder and put her arm around her back. So she hugged
Krystal to.
Mom is at home now, yeah!!!! At 7 pm mom and I got on the mat to
practice her sitting balance. She was so on. She held her balance on
her own for 1 minute and then 2 minutes after a break. This is the
longest she has held her balance and her head up on her own in a
month. She really seems to like being home, she is looking
everywhere. I told mom we needed to get the wheelchair close to get
into it. I was pulling it over and she reached out to help me pull it. I
then said ok; grab it here as I pointed at a lower spot so we could turn
it after pulling. She moved her hand fast to the new location. I told
her one more time where to move her hand to help and she did it like
she had done this tons of times. I said we were going to try sit to stand
to transfer into the chair like old times. She shook her head yes. Well
she put her arm around me and did the best transfer with me. It was
perfect. She was strong, helpful, and controlled. She has not been
able to do this in a month, what a great feeling.
August 4, 2006
Jerrall-
Debbie is doing great tonight and the plan is for Debbie to go home
Monday at 9 am. Deb just went to sleep and her stats are like she has
been everyday at home for the last three years. Deb’s oxygen level
at 98 % and pulse at 78 like it needs to be. Debbie is a very strong
person who had a cold and in her condition not moving around on her
own could kill her. When a doctor sees a coma patient they always
fear the worst. There must not be very many people in the world like
Debbie that gets to come home in her condition. I made a choice
when Debbie’s accident first happened if Debbie was strong enough
to live without life support except for a peg tube I will be at her side
and do what ever it takes for Deb to have the chance for maximum
recovery possible. I am lucky our girls are grown and Debbie and I
have no debt. Though all of this I have learned what things are and
are not important. Also that money can not buy what Debbie’s
needs. This type of a choice I have made most people could not
make this work. Everyone thinks that my life should go on and it is
does, but in a different way. When this is all over one day I will have
no regrets and be able to move to the next step of my life. Debbie’s
case manager at rehab that I have know for over three years has
never questioned my choices and in fact lets me know I am not on this
journey alone. But today to my surprise Debbie’s new at home case
manager that I have never met before today asked me if it was in
Debbie’s best interest to be with me instead of a nursing home. Jeff
does not know all of the facts yet and I do not think he has ever seen
someone like Debbie that can not talk, can not turn over or even
respond that lives at home. I was nice but I will let any one know that I
keep Debbie alive every day and every night and at the same time
provide therapy every day for Debbie so she can have the best
chance for maximum recovery. Before and even this time in the
hospital I have the doctor write the order, decide when and how much
meds are needed and when. Also with the help of our two girls give
Debbie shower and fix Deb’s hair, do all bowel programs and make
sure Debbie is not a lone. THANK YOU girls I could not do all of this
alone. All of the staff says they have never had some one like us
before. I brought Debbie here to the hospital because I could not
handle Debbie’s secretions alone and I keep telling every one we are
all a team working together to get Debbie through this hard time.
THANK YOU STAFF for making a difference in Debbie’s life.
My mom worked in a hospital in Texas for years but what I remember
most is hearing her tell some one I treat Debbie as if she was going to
walk again. I don’t know if she thinks I am crazy or what and I don’t
ask. I am just a regular person doing for others as I would want them
to do for me. Debbie or I did not choose this life but we said in
sickness and health, and until death do us part. Debbie, the girls and
I have had a lot of fun the last three years and we would not change a
thing. No one knows how they will handle a trauma like this until they
are in our shoes.
For the last year I have been saying at what point of recovery does
the meds need to be adjusted. I would never want Debbie to have to
be sick but we all have learned so much from this experience. Under
medical super vision Debbie is now taking 5 different meds instead of
12 meds which is one of the best things that could have happened.
The first 4 day the withdrawal was so bad it took two of us to hold
Debbie down in the bed most of the time. Debbie has not been sick in
three years or medical supervised in three years and I know Debbie’s
meds were over due to be adjusted. If you get lemons then make
lemonade. All though my life I have learned every one you meet if you
listen and watch you can learn some thing from them. This 4 week
stay is like a refresher course.
Today Debbie was on a tread mill supported by a harness relearning
how to take steps again. It was an undesirable feeling to see Debbie
relearning to walk. More later and Amber will post the pictures under
2006.
Amber-
Mom did not go to sleep at all last night. Even though she did not
sleep she was on all day and did her best. At 9:30 am we tried for the
first time an item called a Lite Gait. It is where mom wears a harness
that you wear when you pair shoot jump. She hangs in the air
supported over a tread mill. We move her feet like she is walking.
This is great for her. She did great. She held onto the handle bars
the entire time. A few times she helped with the step on her right leg.
Mom’s arms were really stretched well for OT now. OT started mom
on the hand bike. Yesterday mom did 4 minutes with the therapist
holding onto her hand so it would not come off. Today she did 5
minutes and then did 120 or more turns on her own. The therapist
only had to help her about 1/8 of the way were you come up and then
need a little push forward. Her hand fell of 2 times and she did not
bring her hand down to her shirt she tried to put her hand back on the
pedal and kept going. 18 of these turns mom did completely on her
own with no help. We had to make her stop to go to another activity.
She would have worked on the bike for hours if we let her. We then
went to the table and she was to out the shaped blocks in the correct
holes. The shapes where square, round, and triangle. The blocks
had 4 rows of holes to match. Mom did 3 shapes in about 10
minutes. She did very well; the therapist would guide her verbally.
She would tell her to turn the block around or you have. Mom listened
very well. Soon I will post pictures of all of these activities.
August 3, 2006
Amber-
Mom had a good day in therapy. She first practiced her sitting
balance which is getting better each day. The standing frame went
well to. Tomorrow we are going to try a harness that allows mom to
be in the air and practice walking on a tread mill. Sounds so neat, I will
let you know tomorrow. She later did the hand bike for 4 minutes.
Yesterday she did 2 minutes before she fought to take her arm off.
The therapist said wow that 4 minutes went by fast, you were not
fighting to take you arm off at all. Them mom did a few rounds 2 times
on her own. Next we went into the quiet room to do more. Mom put 9
balls into the basket and kept good eye contact. She was then asked
to pull on a piece fabric with snap buttons to open up the fabric. She
did one after awhile; it took some time to convince her. After she
opened 1 of 4 she only wanted to put it back smooth, not open any
more. It was neat to see her be persistent that she was going to do
what she wanted to do. With Krystal and me mom practiced sitting
balance a few more times. Each times she improved.
August 2, 2006
Amber-
Mom is sleeping the past few nights without oxygen, this is great. She
worked on getting used to the standing frame this morning. Her
pressure did good 3 out of 4 times up. Then she practiced sit to
stand 3 times. She is getting stronger. This was her first time to
really do the sit to stand. She will be starting over with this exercise
as well, but it will come back quick I know. Her next class was with the
hand bike. Her arms seemed to be more pliable. After she did the
bike for 2 minutes she used only her right hand and went around 2
times before pulling her hand off the pedal. She did that 2 more
times. The therapist said she did much better than yesterday. Mom
did great in speech class. She moved her tongue to the left, right,
and up very fast today. She kept eye contact with the therapist
almost the entire time. Mom also, answered questions by looking at a
yes or no card. The yes card was up and the no card was down.
August 1, 2006
Amber-
Well last night mom pulled out the trumpet in her nose and handed it
to me. We left it out and wow how it had stretched her nostril out. By
morning the nostril started to close back up more. Mom is starting to
get the secretions up on her own much better. In speech class today
mom was to look up at the word yes and down at the word no and she
did. This is the first time I have ever seen her do something like this
so well.