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2007
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January 31, 2007
Jerrall-
Today has been so different than usual Debbie slept until 10:30 am.
Debbie got 10 hours of sleep after she had been up for 2 days.
Yesterday Debbie had her best day since 12/18/06. Today Debbie is
inside but not wanting to come out. Also today Debbie had her baclofen
pump refilled. Tonight Debbie has been calm as long as I put her right
leg over mine. We take the arm rest off and stretch Deb’s pelvis. Today
I talked to rehab and to our home health manager. Tomorrow will be a
hard day it is time for the resert of therapy.
I feel the therapist have run out of ideas and gave up on Debbie. Amber
is not here tonight again I can tell by her actions she has given up on
Debbie. Krystal was in the car and she is just now coming a round.
Krystal comes home from college every week end. A couple of weeks
ago her boy friends mom died and I took Krystal to say good by at the
hospital before the plug was pulled. I will always remember Krystal
saying just last week she fixed Ray’s mom a plate of food and how the
mom was so cold she was looking for a blanket. So Krystal’s life has
changed and she wants to be with her mom every chance she gets.
Amber has been with her mom the last 4 years and does not want to see
her mom like this. I have been with Debbie 40 years and I said in
sickness and in health and I will never have any regrets. Bernice was
Debbie’s nurse tonight and with both girls gone we did not have any
keys to lock the back door so Bernice put a chair under the door knob.
With Debbie’s air way, the keys are the last thing on my mind, what more
could I lose at this point.
Debbie went right to sleep tonight after being out ½ a day to the doctor.
There are no words to describe how at peace Debbie is tonight. I will
sleep 4.5 hours in the living room and Bernice has a desk right at Debbie’
s bedside if anything was to happen. I can not tell you how good 4 or 5
hours of sleep is like after the last 4 years.
Debbie had a good night with Bernice who had to leave at 7 am. It
started to snow at 5 am when I was up to use the restroom. Bernice was
changing Debbie but I did not help but right back to bed because I only
have one hour left to sleep before the next day begins. You know you
really love some one when you get so tired that sleep is more important
so I can be here tomorrow.
For some reason lately I feel I have been backed in a corner with no
choices. Therapy, Nursing, Amber and the Doctors do not know how to
help any more and I feel no one has Debbie’s best interest in mind first.
This is no one fault but Debbie will get better in her own time and I have
no say in anything. The last thing I need is to be a lone with Debbie and
no options.
Today has been an extra long day and I feel so alone!
January 30, 2007
Jerrall-
Bernice was Debbie’s nurse last night and Amber was gone so I help
Debbie to bed, it is a 2 person job and when I have to do it a lone it
takes me 3 hours. The worst part of my day is bed time and with the
nurse here I do not dread it any more. Debbie did not sleep all night
long even with extra meds and pottied every two hours. Bernice took
care of Debbie and I got 5 hours of sleep. I pray that we get to keep
night time nursing because taking care of Debbie is starting to be a
three man job. I got Debbie up in her wheelchair at 6 am and today is
another one of those extra long days.
Debbie has had several nights where she has had apnea 3 or 5 times a
night and the nurse has two shake Deb a few times. Suction is needed 2
to 6 times a night to keep Debbie’s air way open.
This morning we did oral care, stretches and the usual. Debbie and I
were in the kitchen, looking out the window and having lunch with no
extra meds. Debbie shows no sign of being tired. After Debbie had
lunch we were just setting there and I could tell that Debbie just clicked
on. The first thing was Debbie’s muscle tone was normal and her
posture in her wheelchair. Debbie did not have any tremors even her
right hand. Debbie has not been this on since December 18, 06. I put a
ball in Deb’s hand and Deb reached out and put it in the cup. We just
set there for ½ of an hour it was great to observe and PT was on the
way. I never say anything to the therapist and love to see them when
Debbie waves hello and smiles. Some times I think they will fall in the
floor.
Brain asked Debbie what she wanted to do and Debbie would shake her
head yes or no. Debbie wanted to stand on her LiteGate but I said let’s
work on the ball for balance. I knew Debbie could do this but she is not
ready to free stand and I wanted her to feel good about herself today.
Brian left with Debbie setting in the kitchen chair. He wants Debbie to
get out of the wheelchair as much as possible to build muscle strength.
We set side by side in 2 kitchen chairs and watched a TV show. Debbie
kept wiping her mouth with a wash cloth. When Debbie goes two days
with out sleep she is always on the next day. A long with this good thing,
comes some thing no one would ever want to have to deal with.
As soon as I saw the saliva issue start I laid Debbie on the mat and got
the pulse/ox machine. Debbie was at 94% oxygen and 70 pulse and
131/87 blood pressure. I gave Debbie a breathing treatment with a 2
liter flow of oxygen. Still Deb only came up to 96%. After the treatment I
gave Debbie a 5 liter flow and she would come up to no more than 98%.
This tells me a mucus plug or her lungs are not working right. As soon
as I took the oxygen away Debbie would drop to 93% so I turned Debbie
on her left side to drain her saliva and I gave her another breathing
treatment with a 3 liter extra flow. All of this with Deb lying in my left arm
and my right arm working the nebulizer and suction wand and the oxygen
cylinder. All so during the treatment I did chest percussion. When I
finished with Deb on her side I did a good suction deep in her throat and
got a lot of mucus. Now Debbie could hold on her own setting up in her
chair 96%. Still this is not normal for Debbie.
At 5:30 Debbie ate and I gave her extra meds to slow down the tremors
and help with the panting. Still 96%to94% was as good as it would get.
Before meds pulse was at 78 and blood pressure was 142/94 so this
time I did give Debbie propranolol.
At 6:30 pm I did an hour of oral care and now Debbie is back to 98%
oxygen. If you do not do oral care 3 times a day or more there will be
breathing problems. It is 9 pm and time to get ready for a shower.
Tonight there will be two nurses so more than one person knows how to
take care of Debbie.
Long hard good and bad day!
January 29, 2007
Jerrall-
Debbie slept 8 hours last night from 12:30 am until 8:30 am. I do not see
how with all the people in the room and the lights on. This is the issue
today Debbie for the last two days Deb has been holding her potty
during the day for 12 to 15 hours at a time. The last two nights Debbie
has pottied 5 times. This is defiantly normally going goes three times in
24 hours. Amber asked if we need to check for a urinary tract infection.
The night of the 27 th Stephanie was the night nurse with no problems
and Amber was with Debbie for several hours then I was with Debbie for
5 hours before the nurse again. When I had to suction Debbie’s mouth
there was blood in the suction canister. I could not see where the blood
was coming from. I checked even with a tongue depressor. When the
nurse Bernice got here I let her know. Also I showed her the wrong
suction wand was being used and asked her to tell all of the nurses.
Now we have nursing Amber is gone again tonight so this will not get
posted until I do not know when. I am going to learn this computer as
soon as possible.
Nursing has said they have been approved for another mouth March
15. I hope this doesn’t mean Debbie is getting sicker. I see that Amber
does not want anything happen on her shift. The first year Debbie was
asleep most of the time and going some where was no problem. The
second and third year was great and no problem to take Debbie any
where. This last year I have been the only one to keep Debbie a live
and when we go some where Debbie is having a tremor issue or jumping
and hard to keep her in her wheelchair. I think Debbie knows her
surroundings but does not want to want to come out of her shell.
The days are long for me since Debbie never talks to me and I hope
Debbie’s day goes faster. We do not see many outside people now
days. This oxygen issue has only been an issue the last 6 mouths. This
is so hard for the girls to see but I am with Deb all the time and it is hard
to see the change. But I am a person that can even tell you want day it
is. (Sleep desperation) I still would not trade this time with Debbie for
anything.
With no one else in this big old home it is hard to make anything to eat
for one so soup and crackers are my main diet. It will get better with time
just some times I get so tired and sad.
To night there will be two nurses, so every one can get used to Debbie.
The staff wants to make sure there is always some one that can be with
Debbie at night.
Debbie is still doing well but every one sees I need some help.
January 28, 2007
Jerrall-
Today it was cold and windy; I am glade we did not have to get out.
Debbie was up by 5 am which made a long day for every one. Bernice
the nurse is back tonight so I got to bed by midnight and Debbie was in
bed but did not look tired at all.
Debbie was so calm today until 4 pm when Deb’ blood pressure was
137/92.
January 27, 2007
Jerrall-
Debbie got up early today and by 10 am Debbie started going crazy,
97% oxygen, 98 pulse and 108/66 blood pressure. Tight and jerking all
the time even in the wheelchair she is shaking. I gave extra meds
Atavan and Propranolol. All of this is because Deb needs to potty and
can not. No matter how much meds you give Debbie until Deb uses the
bathroom she will be shaking. Some thing must be wrong when you
need to potty it school not cause this much problem. In about 3 weeks
Deb has a doctor’s appointment.
At 10:30 am Debbie’s left arm is loose.
11 am the drugs are working right leg is calm. There is a little rotation in
Deb’s right wrist and mouth has a small tremor.
4 pm Deb is starting to get tight again so we are going to the mat to
stretch out. Pulse is 79 and blood pressure is 116/76
5:45 still on black mat Debbie went potty and is now calm.
6:40 Deb eats and pulse is 75 and blood pressure is 128/83
January 26, 2007
Jerrall-
Last night Deb slept another 8 hours with out extra meds except
propranolol. The last few nights Deb has been 145 or above on her
blood pressure but only at night.
I am so tired I can not remember what we did today. Some days take so
much out of you and seeing Debbie in this condition does not help.
January 25, 2007
Jerrall-
Last night Debbie slept 8 hours with extra meds and I slept 5 hours. The
nurse has been here 5 nights 11 pm to 7 am but having to train them for
Deb’s special needs takes time. Also Amber wanted nursing so she
could stay with friends and have her life back. So the nurse is doing
Amber’s job and I am having to work extra to also train new people.
Amber said she has done her 4 years and now she wants to work on her
personal life. This is fair because a mother and daughter are different
than a wife and husband. Kids are only home until they get there wings
but Debbie is what I have lived my whole life for I will never quit no matter
what I have to give up for my self. Debbie is the one that had to give up
the most. Debbie is locked inside her own body. Last night I was talking
to Deb not expecting an answer and to my surprise Deb was more on
than I thought. For the last week Deb has not talked to me. Any way I
was telling Debbie it will get better just keep trying and Debbie whispered
no and nodded her head no. Debbie can not give up now after all she
has been thru. We kept talking, me with words and Deb with body
language. Debbie agreed that talking may come back last or not at all
but walking is the most important thing to work on. This went on for a ½
hour and I think we were making connections.
This is how we spent Debbie’s day.
9 am stretch in bed and some oral care
10 pm get up in wheel chair and she had
10:30 pm get up in chair/Dry mouth/ Deb shaking/ 97% oxygen level on
her own
11Strech in chair/ legs better, But Debbie was shaking so much that her
chair was moving.
11:15 Start oral care
Noon finish lunch 111/68 and pulse 95 regular meds plus 5 mg Ambien.
Debbie has been panting for a while just taking short little breaths. For a
½ hour I stretched Deb’s left arm then a ½ hour stretch to Deb’s left leg
now Deb’s stats are 113/73 and a pulse of 88.
1:20 pm I laid Deb on the black mat and got her dressed for PT session.
The hardest part is putting Deb’s shoes on if she does not want them
on. Thankfully Deb has not yet learned how to get the double knots.
2 until 3 pm Debbie working with Brain mostly on setting balance and
only 3 free stands from the wheelchair.
From 3 until 4:30 Debbie got to rest and have her own time.
4:30 pm Debbie worked with me on the tilt table at 80 degrees 50
minutes. At the start Deb’s stats were 124/82 pulse 79, after standing
133/83 pulse 69. The whole time standing I put one ear plug in Deb’s
ear and one in mine and we listen to old songs Krystal put on my I-pod.
Debbie also had a mirror in front of her and Deb was getting visual in
put. This was a great session eye, ears and legs all had a work out.
At 6 pm Deb ate and had regular meds while watching 50 first dates.
With the girls gone almost every night I do not take time to eat but to
night for the first time I can remember I cooked dinner for just myself.
Debbie would not let me eat this before the accident but it sounded so
good. Fried pork chops, mashed garlic potatoes and pinto beans.
By 7 pm Debbie was starting to get wild so I took Debbie’s right arm rest
off her chair and put Deb’s right to the side and in my lap. This seamed
to help with the pain in her pelvis. We sat like that for over an hour.
January 22, 2007
Amber-
Mom had a few wild times but she did good with the push button. She
used her finger to point and push the button to turn the lights on and off
when we came into the room and left. She had a really good sit to stand
today.
January 21, 2007
Jerrall-
Today is Sunday and cold 39 degrees and cloudy. I do not know how to
say about Deb’s rest last night. I would never hurt any ones feelings so
what I say the next month is being honest and wanting the best for
Debbie. The different nurse tonight was a Nero nurse and a take charge
person. She said tell how and what I do and for me to stand back she
will do all the work this is her job. She came a little early and I was just
finishing Deb’s oral care before Deb’s goes to bed. About 9 pm last
night Debbie’s blood pressure was 145/105 so just before the nurse
came I had given Debbie extra meds and when the nurse saw Deb she
was calm. I need the truth in the record but not at the point Debbie
suffers. This is how our life is every minuet Debbie changes and you
have to go with the flow. If you try to fight it Debbie will respond twice as
much and we do not want a hart attack.
We got Debbie in bed at 11:45 pm but she did not go to sleep until 2:30
am. Debbie woke up at 7 am this is 4.5 hours sleep. Before Debbie
would go to sleep I had to set in the floor at the head of her bed and
hold my hand on her forehead. Debbie can tell some thing is different
and that a new person is in the room. This is only the second night to
have a nurse at a desk in Debbie’s bedroom monitoring Debbie thru the
night. Hopefully Debbie will adjust to this change. There are some goal
changes that have to be made tonight. Main goal is for Debbie to get the
most sleep possible with the least amount of meds. The nurse last night
wanted for me to go to sleep and she would work on Deb all night. It was
like at the hospital some one all way coming in and turning the light on.
When Debbie feels comfortable with the nurse and will get some sleep
then I will go to sleep. Every body thinks of themselves first and others
second. That is not how it works with Debbie and me.
I need nursing help at night so Debbie and I can get some sleep and
Debbie choking to death before morning. Also a nurse can chart Debbie
while she is a sleep and work with the doctor to let me know is there is
any thing else I need to be doing. I am so tired to night than when
Debbie and I were alone.
Debbie has been calm all day with no extra med and does not appear
tired at all. Debbie does appear to be extra on today. All of Deb’s stats
were good all night and all day with little suctioned as of 5 pm.
Now at 7:30 pm Debbie is starting to get tighter and wilder. Deb’s pulse
is 100 and blood pressure is 145/87. I do not want to give extra meds
until the nurse gets here.
To night is shower night and may be that will help.
Krystal had to head back to college so Amber came home to give Debbie
a shower and me some help with the new nurse.
Thanks girls.
Tonight the nurse was great. Amber and I had just finished Debbie’s
shower and got Debbie into bed and the new nurse came at the right
time while Debbie was having an oxygen issue. So the nurse got to help
get Debbie to bed and show ware all the braces go and give a breathing
treatment. Some thing we all learned is when the pulse is over 90
there
January 20, 2007
Jerrall-
Today I am so tired from that long night our day started at 4 am. Krystal
was home tonight and watched Debbie so I could get some sleep. We
took Debbie shopping for some things for Debbie’s room mainly lighting
to make every thing work better for Debbie and the nurse. Before the
nurse got here Debbie started to get wild and her blood pressure was
145/90 so I gave Deb extra meds and when the nurse got here Debbie
was calm and Deb’s pressure was under a 100 so this gave the wrong
appearance. This is second time for nursing and it is a different nurse.
For the first week a different nurse will be here and training them is
harder than doing it alone.
January 19, 2007
Jerrall-
Debbie woke up at 7 am and was as stiff as could be. I gave her a good
work over and changed Deb’s depends. At 8 am I gave Debbie to
Amber so I could get a little more sleep. The only problem is 1 ½ hours
is all I could sleep. I was with Debbie for a little while and got Deb
dressed and also took Deb’s bedroom apart. I had to go to the Doctor
for a check up and while I was gone Amber worked hard on the house
and with Debbie. Tonight will be are first night with a nurse helping with
Debbie 11pm until 7 am 7 days a week.
I had to move my bed to the living room and put a desk in Debbie’s bed
room. We will be doing this for 30 days to see what Debbie’s needs are.
We never had to go to court on the appeal.
This afternoon Debbie’s pulse went over a 100 and was going crazy so
Amber gave Debbie ½ of an Atavan and calmed her down until 6:30 pm.
The meds worked but that is no way to live. It is 8 pm and time to go to
the mat for a session.
To night is the first for the nurse to come 11pm until 7 am. Every thing
went ok Debbie is still alive. Debbie only slept from 2:30 am until 4 am. I
went a head and got Debbie up in her wheelchair and we started are
day. I do not think the nurse was used to some one hurt like Debbie.
The nurse saw Debbie’s stats drop to 94% only once during the night.
Also she saw Debbie stop breathing while she was a sleep so the nurse
shocked a couple of times and every thing was ok. I sleep for two hours
in the other room and could hear the nurse suction Debbie several times.
January 18, 2007
Jerrall-
Last night Debbie slept 8 hours straight with extra meds. This morning
Debbie is very tight and right arm is jumping more than normal. At 10
am we are going to the mat and get all stretched out I am sure is feels
great, especially when it is over. I got Debbie dressed and worked with
her for 2 hours. Debbie ate at noon but still that right side is drawn and
shaking (tremors). So I left rest for an hour and watch TV. Heather the
nurse intake person is supposed to be here at 1 pm to finish the paper
work. Friday night from 11pm to 7 am 7 days a week for the next month
then they will decide what to do next. This should be an interesting
month.
Brain came while nursing was here and had to do the session by
himself. As he was leaving Brain said as long as Debbie heard my voice
every think was fine and when she could not Deb would put her head
down and did not want to follow commands. May be Debbie is in there
more than we think.
When everyone was gone Debbie and I lay on the mat under a blanket
and tried to get Debbie warmed up while she also got to look out the
window. It is so cold outside ice is building up on the birdfeeder.
About 4 pm Dr. Hammond’s nurse called and said she was calling in all
the new scripts because nursing said that could only use the original
med bottles. Dr Rachima nurse also called and said Amber could come
tomorrow and get Debbie’s new shot for her bone replacement. Ins. is
still arguing about paying for med and it is $700.00 a mouth. So that
worked out.
At 5 pm Deb and I started to watch a movie. The Ambien and ¼ gm
Atavan stopped almost all of the tremors. Starting tomorrow night the
nurses will be in charge of all the meds. This will be are last night a lone
for a while. Still Deb could choke in my arms before nursing would call
911, we will see.
We have a lot to do in Debbie’s bedroom before tomorrow night, move
out my bed and set up a desk for the nurse.
January 17, 2007
Jerrall-
I got some sleep today and when I got up and saw Debbie I asked Amber
if Debbie is ok and she said some stretching will help I asked Amber to
get the pulse/ox machine. Debbie was 95% and 114 pulse. I told Amber
to go do something she needed to do and I will fix Debbie. At this point I
do not think Amber really understands how to keep Debbie breathing
and control tone.
It took me four hours to get Debbie back to normal. First I gave Deb
extra meds. Next we did an extra breathing treatment. Now an hour of
oral care and suction I have Debs stats good with part of another
breathing treatment. By 9:30 pm we got on the mat to drain all extra
saliva and then stretch every thing. Tonight is shower night so I hope
another great night’s sleep. Debbie was a sleep by midnight and did not
wake up until 7:30 am. Even when I suctioned and changed her
depends Deb stayed a sleep.
January 16, 2007
Jerrall-
Last night was one of those nights. Debbie was in bed by midnight and
asleep by 12:15 am. That was great but at 1:30 am Debbie was going
crazy in her bed and her oxygen level was 88 % with a pulse of 98. Also
from all of that jumping Debbie had leaked and I changed her depends.
Next I took off all of Debbie’s braces. I turned on the extra oxygen and
gave to Debbie after 5 minutes Deb’s level came up but just a little to 94
% at a 5 liter flow that is the max I have at home. This tells me it is not a
mucus plug but a Nero thing. I got Deb some extra meds to calm her
down and then gave Debbie a breathing treatment with a 5 liter flow. It
took 2 ½ hours to get back to normal. Now it is 4 am and I laid down with
Debbie in her bed and just held her tight. At some point Debbie finally
went back to sleep.
This morning we did not get up until 10 am but I know I did not feel
rested. Debbie and I spent the morning in the kitchen oral care and
facial and breakfast. Debbie was calm all day. At 1 pm after lunch
Debbie stood 30 minutes on the tilt table just before PT came. Brain
came and worked with Debbie on the Lite gate. Debbie still can not
stand but while she was setting on the ball she was making it bounce. I
can tell Brain was not impressed. Every one thinks Debbie can not think
but Susanne. Other people are only around Debbie 2 hours a week how
can they know anything about Debbie.
Debbie and I have had a great day today except it is 7 pm and I need to
stop and give Debbie her first breathing treatment of the day. I would
have given anything for a nurse, Doctor or anyone to have watched
Debbie until 9 pm. Debbie was dropping from 98% to 88% oxygen level
for no reason. Deb was having tremors so bad a nurse would have
sedated her, and then goes therapy for tomorrow. I gave Debs some
extra meds like a ½ gram and more breathing treatment. I did oral care
for a ½ hour that worked the best. I checked Deb’s bottom and installed
a suppository, laid on the mat, and let her jump in my arms. I am no
doctor about oxygen but all of that jumping was because Deb wanted me
to know she had to use the bathroom.
Long Day we both have to sleep tonight.
January 15, 2007
Amber-
Mom and I had some time together today. She did have to saliva times,
but for an hour and a half she did well, around 5 pm. She communicated
to me in her own way and we did sitting balance and other things. This
time was smooth. Later her throat bothered her again. When she went
to bed I put her left arm in her shirt and she lifted her right arm up on her
own to help.
January 14, 2007
Jerrall-
Today was great Krystal and I took Debbie to this man made river for
rafting and kayaking. We went on half of the trails I just there was 500
people there. But it was 70 degrees and just like spring.
January 13, 2007
Jerrall-
Debbie got the best present last night and you can not it at a store.
Debbie went to sleep at 12:30am and did not wake up until 10:00 am.
This is the longest nights sleep in a long time. Also Debbie’s stats were
great last night and only needed suction three times.
This morning Debbie was vary tight and had a bad tremor in right arm
and mouth. Once up Debbie got loser except her feet and ankles.
It was 70 degrees to day so Debbie had her lunch on the screen porch.
Still Debbie has not tried to talk to me today. We have rested on the mat
and watched a couple of movies. This afternoon has been better
Debbie is calmer without extra meds.
Krystal watched Debbie for a couple of hours so I could get some extra
sleep. No amount of money can make up for sleep Thanks Kris.
Tonight Krystal stayed over and gave Debbie a shower and fixed Deb’s
hair we finished at midnight and Debbie is in bed but not a sleep yet.
Debbie has this look that she feels so good and relaxed and ready for
sleep. I went to the bathroom for only a minuet and with the hair dryer in
one hand I could hear Kris suctioning with the other. Keeping Debbie
airway clear has become normal in this house for years. There is always
a suction machine in any room with Debbie.
Tonight I was not as mad as last night when we got Debbie to bed. Bed
time is my worst of the day. Seeing Debbie setting in her wheelchair she
looks great but getting her dressed and into bed you see how she is
total care and all the rolling and lifting just to be able to go to sleep.
Then it is time to put all the braces on. Every night a little part of me
dies each night.
We had a good day.
January 12, 2007
Jerrall-
Today is Debbie’s 48th birthday. Debbie went to sleep at 1:30 am and
woke up at 3 am this morning, an hour earlier than yesterday. Once
again I tried even giving Debbie ½ of her breakfast and extra meds. I
even laid down with Deb and removed all braces and placed a pillow
under Debbie’s legs. Finally at 5 am, Debbie went back to sleep. We
got up for the day about 9:30 am. Stats stayed great all night and this
morning Debbie looks alert, but is very tight and jerking her right hand
and head.
Amber is packing to leave for the weekend and Krystal is coming over
later with balloons, cake, and all the trimming. It will be party time.
Debbie has been calm this morning sitting or laying looking out the
windows. I sure hope Krystal comes today because Debbie and I need
to get out of this house.
OT Susanne comes at 2:30 pm for an hour session. I can tell Debbie
looks forward to seeing different faces.
Some how Debbie was awake and I was asleep and both of us were on
the mat. As long as I have Debbie in my arms, I will wake up if Debbie
needs me. Susanne came in and woke me up by surprise. Susanne
worked with Debbie’s left hand and was able to get Deb to move her left
hand. Susanne said Debbie’s left side was getting stronger. Also they
worked on writing. Debbie could make marks, but not able make letters.
It is 5 pm and Debbie and I are watching Jumanji on a DVD. Debbie is
starting to jerk her right leg and hand and taking a lot of shallow
breaths. I think Debbie needs to go #1.
Today Deb’s case manager called me to let me know she is still working
on nursing.
Susanne is a great therapist, great friend, and sometimes she is the only
person I may see for days. Still she reminds me not to give up and stay
strong it will get better. I can tell she has not given up on Debbie like
speech did. Thanks Susanne for more than I can say in words. With
Deb never talking to me sometimes I feel like I will never see the way
Debbie before. But Debbie and I were never quitters. Debbie and I love
each other so much still that every one around you can tell. No one
knows what to do to help. Now 6:30 pm we are watching Titanic on DVD
one of Debbie’s favorite movies before the accident. I feel like a very
special person, Thanks Susanne.
This movie reminds me after 111 days at rehab with Debbie when we
both came home the two patio chair were in the same place where we
left there the night before the accident when we were looking at the stars
in the sky off the deck at home.
Tonight at 7 pm, Krystal and her friend Jenn came over and gave
Debbie 20 balloons which Deb held on to for hours. Krystal and Jenn
went into the kitchen to cook dinner, what a surprise. But the best thing
was for the first time in four years Debbie helped blow her birthday
candles out. Krystal said Dad did you see mom put her lips together and
blow. To me it seams like from the neck up Debbie has more control but
trying to get a signal though the neck or brain stem is an issue.
Great day, but a long day.
January 11, 2007
Jerrall-
Today started at 4am for Debbie and myself. I changed Deb’s depends
at 2:30 am and every thing was fine also Debbie did not wake up. At
bed tine Debbie had regular meds nothing extra like Elavil that is prn. At
4 am I heard Debbie making a noise every breath she took. When I took
the suction wand and cleared the back of her mouth Debbie woke up. I
tried every thing to try to get Debbie back to sleep, even lying down with
her in her little bed. The biggest difference was Deb’s oxygen level was
low around 90% and her pulse was high 98. When Debbie sleeps
normally oxygen is 98% and pulse is 75. I got Debbie up in her
wheelchair and we went to the living room and watched a movie. After
about an hour stats returned to normal with out any medicine. Then off
and on the stats would change again. A high pulse tells me pain and
Debbie can not tell me where I just have to reposition her. I did not give
Debbie any extra meds or oxygen. At 1:30 stats are back to normal.
This morning the lawyers called and said go ahead and file today myself
the appeal he would not be in town until next week and he will call me to
see where we are.
Next the nurse Ann with Bayada that spent 3 hour here yesterday filling
out paper for a cna to help Debbie said they were not going to be able to
work with Debbie. After she was here 3 hour she saw how Debbie need
a lot of suction and chokes a lot the only person who would be qualified
to stay with Debbie would be a nurse. The nurse that came last week
and did paper work for a nurse at night works for the same company and
INS denied it saying a cna was good enough.
So then I called the other nurse Heather and told her the story and
about we were faxing appeal papers to day. Heather said she might call
the INS Company again.
Next I called the case manger and left a message as to what was going
on today.
So as of now Bayada says Debbie will have to have a nurse not a cna.
And the ins says no nurse just a cna. At least the appeal papers were
sent in today. Debbie and I are going to keep doing like we have for
almost 4 years. The last thing I need is some one getting in my way.
It is 9 pm and today is the calmest day Debbie has had in weeks without
extra meds. There have still been tremors in Deb’s right hand and
mouth. Debbie’s right eye has been so bright all day even she got up at
4 am. Debbie has been on all day but not trying to enter react with me
or PT Brain. It has also been a long day I just hope it went fast for
Debbie. We finished getting the Christmas tree down and all the laundry
done and 3 movies.
Every one who needed a call today got one we will have to wait about
nursing. Amber is taking a three day holiday starting tomorrow so this
will be a long weekend. When Debbie sleeps I will sleep.
Today in the living room where Debbie watches TV I taped 28 pictures of
a lot of good memories and time to time I see Debbie looking. What
good are they doing in a book? Amber calls it a shrine. I want to wait
until at least 11 pm to start to bed because Deb never goes to sleep until
1 am.
Amber-
I had mom open one of her birthday presents right before bed. She
pulled on the paper and she held it. It was a movie, she was holding on
to it and looking down to see it.
January 10, 2007
Amber-
Mom and I enjoyed out time together today. She did great transfers with
me and sitting balance. We tried to take ornaments off the tree. I took
them off and handed them to her to put in the box. She reached out to
grab them but wanted me to put them away. It was fun and useful. Till 8
pm mom had to suction times and 2 short jumping times she over came
in 20 minutes. This is good. Thanks for the fun mom.
January 9, 2007
Jerrall-
Debbie had a great night last night maybe 8 hours sleep. Debbie finally
got to use the bathroom just before bed and the first since the new peg
tube was installed. Now we know every thing is working right and no old
parts were left inside LOL.
This morning while I was getting Debbie wheelchair so she could get up I
heard her oxygen alarm going off I think she was holding her breath
again to get my attention. Once Deb was up everything was ok. Debbie
has been extra tight this morning and extra jumpy. Right now I have her
right leg hanging off the mat giving her pelvis a good stretch but that
right hand is really up set.
At noon today a new nursing company came to see Debbie and if she
fits their guide lines for CNA help. We will here back in a week or so.
Also the law firm confirmed getting the paper work Amber faxed
yesterday and they said Wednesday they would have a meeting and
then give us a call back. This is about the appeal for night time nursing
so I can get some rest at night. What a week some times I just want to be
left along.
PT Brain came and worked with Debbie for 1 ½ hours. Debbie really
likes to work with Brian and he said Debbie did well with standing transfer.
Now everyone is gone Debbie and I are watching 50 first dates.
I have spent the last 4 hour researching brain injury on the internet and
coma. I have found the only meds that work is touching and feelings and
love. When Deb takes a pill she is calm but lifeless but when Deb wraps
her leg around mind like an eel a magic happens. When Deb grabs my
neck it is the same. Debbie is going to have herself from the inside out
and in her own time. If I was to not be with Deb for several days she
might give up and then what. When we are together there is something
special and we do not even have to talk to each other. This sounds
crazy but from what I read coma is a choice between life and death it
depends on the person and there will. Together we are one and without
Deb I can not imagine.
Long day but good day!
January 8, 2007
Jerrall-
This is not a post I want to make, so things you keep personal but there
is strength in numbers and I need all the prays possible and any other in
put that would help.
Last night was a rough one for Debbie. It started with a good shower
and even a little early. We got to bed just like normal and Debbie was
calm and nothing usual. I went on to sleep in Debbie’s bed room and
Amber kept an eye on Debbie while Debbie was trying to go to sleep.
Amber woke me up about midnight as she was off to bed. Some times
my eye are open for to long at one time. I can open them but I can not
see out of them. So I checked Debbie with my hand and Debbie was
soaking wet. I went to get Amber but my eyes were not working so
Amber had to change Deb’s depends alone. I think Debbie stayed a
sleep. Debbie slept from midnight until 4 am. I changed Debbie’s
depends again and her shirt was wadded up under her and marks on
her back, Deb’s left arm brace was off and her left arm was drawn up
and stiff. From 4 to 5 am I got Debbie back together and went ahead
and fed Debbie and got in bed with her and let her lay her legs over
mine and gravity stretched them out. At time like this when Debbie is not
hungry but still restless just holding on to her relaxes her faster and
better than medicine. At least Debbie got to go back to sleep until 7 am
and we just got up early and watched a movie. At 8:30 I woke Amber up
and let her watch Debbie until 1:30 pm so I could get some sleep. I can
not help Debbie if my eye will not work. When I got Debbie at 1:30 pm
she was tired I laid Debbie on the mat and we watched the squirrels play
in the back yard. I got up and let Debbie have so alone time for a while.
Then the saliva issue started and I suctioned and cleaned Deb’s mouth
then up in her chair. I did one breathing treatment and in one hours time
everything was ok. We watched a movie together.
The last CT-Scan showed atrophy of the brain stem and on Wednesday
we have a Doctors appointment and may be we will find out how long
Debbie will still remember me. I can work with the truth; it is not knowing
that is not fair. My problems with western medicine you are only told
what they think you need to know. I have a 4 page list and Wednesday
will start a big problem in the medical field.
Also today I faxed papers to a lawyer to protest a decision that Debbie
did not know need night time nursing. I was going to let it go but I can
not stay up for ever and Debbie deserves better. I am sure this will
make even bigger problems for me but is going on four years and with all
the data I have alone some one can make a prognosis.
This can be good or bad but at least it is the truth and fair to Debbie and
her up coming needs.
No one can ever prepare for any thing like this. First is the shock and
then disbelief. There is no place to get information fast enough because
every one is different and there is no way to compare one person to
another. What is common is how fast the muscles tighten up. The
hospital will save there life but it is up to you to keep the body in
position. I used pillows, wash cloths or any thing I could find. I put hair
brushes in Deb’s hands on beanie babies. Do anything to prevent foot
drop or contractions. I do not know any one being the same person they
were before but never give up. A lot can come back but you only get out
as much as you put into anything.
I read of others and it still hurts I would not want any one to have to go
though this. When Debbie is shaking and jerking in my arm and no one
is around to help on advise me it is a feeling words can not explain and
the hardest part of brain injury. In time the shaking up stop for no
reason and give you a chance to regroup for the next issue.
It is now 9 pm and Debbie has been jumping for the last 3 hours. Some
time reaching out for my hand and then pulling away for no reason.
Long hard day!
January 7, 2007
Jerrall-
It is 3 am and Debbie is asleep and everything is okay for now. I think it
is safe for me to get a nap with one ear open. I still would not change
this time for anything. Debbie still knows and uses a big switch to turn
on or off the Christmas tree lights. I wish that man had not of smashed
Deb’s left rib cage. Her car seat was only 5” wide after the accident.
This is more the issue than the brain injury. Brain injuries usually do not
kill you. It’s all of the other organs.
Debbie slept in until 9 am this morning, 6 or 7 hours of sleep is normal
now days. Today it rained so hard we had to cancel a lunch with some
of Debbie’s friend and stay at home. Today being Sunday makes for a
slow day but I gave Debbie 5 mg Ambien this morning and at least she is
with us and not jerking.
Tonight I can remember like many nights holding onto Debbie’s right leg
and toes while Amber is giving Deb extra meds to calm her. It take about
15 minutes for the meds to work and I can feel Debbie’s muscles go
limp. Good thing and bad thing but atleast Debbie is at peace.
January 6, 2007
Jerrall-
Debbie had a good night and we both were up early watching a movie
during breakfast. About 8:30 am, I woke up the girls because Amber
needed to stay with Deb while I helped Krystal get moved back into her
dorm room. Christmas break is now over. The college put in new
windows during the break, so there was a lot to move out and then back
in about 5 hours. All the curtains are back up and almost back to
normal. It is so nice Krystal is only an hour away. Krystal came back
home with me to help with Debbie since Amber was going to be gone.
At 3 pm, we got home Amber was starting to get Debbie up in her chair
after Deb had been lying on the mat. Amber said Debbie was okay
every time I called and at 3 that I should check her mouth. Debbie has
changed in the last week with her saliva issue and I do not think Amber
knows how to deal with it. I am with Debbie so much, we are almost one
person. It took a good hour to get Debbie stable even an extra
breathing treatment. Then Deb, Krystal, and I set out in the screen
porch and watch the sunset. It was 70 degrees and a beautiful day.
Tonight, the three of use went to the mall to get Krystal a pants suit for
Ray’s mom’s funeral on Tuesday. That day is also Krystal’s 19th
birthday. I told Krystal that Debbie and I would go with her if she wanted
our support. Just as we were leaving the mall that saliva issue started so
we came home instead of getting grocery’s for Krystal. Today, I have
done 5 breathing treatments extra. This is a first. Tomorrow has to be
better.
It was 1 am, but we got Deb to sleep and we will just have to see how
tonight goes. One day at a time. The wall at the head board of Debbie’s
bed has everything the ICU has, if I can only stay awake.
ANOTHER LONG HARD DAY
January 5, 2007
Amber-
Today we went to the hospital to have mom’s peg tube changed. The
doctor could not get it to come out, so they had to put her to sleep and
take it out through her mouth. I was so mad and upset. In the end, she
came out okay. She is home and well.
Jerrall-
Today was one of those gray rainy days. Debbie stayed asleep last
night, but with all the work going on, it could not have been a resting
sleep. Debbie had to go to out patient today to get a new peg tube at 11:
30 am, but no one was working with me. Debbie had saliva issues all
night and this morning was the same except Debbie was in her
wheelchair setting up instead of bed asleep. Amber kept saying we got
to go we are going to be late. I asked Amber to call 3 times and tell the
doctors we will be late I can not take Debbie anywhere until I get her
stable. I am no Doctor and have no nursing help. I think that this
sounds strange for Debbie’s husband to get her stable even before we
can go get outpatient work done. With a brain injury person like Debbie,
no one wants to help or get involved. It is ok today, but some changes
are about to have to happen. No one can live on 2 hours sleep every
other day. I do not even know what day it is most of the time, and the
girls can only do so much. Nothing is going to happen on their shift if I
can help it. I am past being tired or hungry and back to 168 pounds.
When we got to the hospital and to the OR the Doctor gave Debbie’s
peg tube a pull and it would not come out like last time. Amber started to
get upset and I ask Krystal to take Amber some where to eat and come
back later. I had to stay with Debbie and go back to the ICUOR. I told
the girls that everything would be ok. There was no reason for this
problem, but Debbie had to be sedated and the Doctor had to go though
Debbie’s mouth and remove the peg tube backwards. The issue always
is how much sedation Debbie can take and still be able to wake up and
not slip back into a coma. Everything went okay, but the Doctor said he
was glad we were at the hospital and not at his office for this. Everyone
was stayed calm and it just took a steady hand. I have learned that
there is no I in team.
After six hours, we were back at home and tonight was bath night.
Debbie did not go to sleep until 1:30 am, but that was normal.
LONG DAY !!
January 4, 2007
Jerrall-
Debbie slept great last night and since I have been feeding her
breakfast at 5 or 6 am, Debbie has slept until 9 to 10 am. I am thinking
that Ambien in the morning and her being “on” most of the day Debbie is
sleeping more; there is some good and some bad to this.
This morning I took Krystal to the hospital to say good bye to Ray’s mom.
This was one of the hardest days ever. Tonight Ray’s mom pasted away
at the age of 48. She was so young. We saw her she was asleep and in
no pain, so we only stayed a ½ hour. Her lungs deteriorated an in 3
days. That’s how fast things can happen. She was not even in the
hospital for her lungs. Ray, I feel like you are like my own son.
Tonight, I took Krystal to dinner for her birthday. We had fun even with
everything happening today. Amber has been with Debbie all day and at
times Amber said Deb was wild.
It is 9 pm now and Debbie is mine until tomorrow. She is kicking and
jumping and this should be fun. Debbie and I are getting used to each
other and she is winning.
At 3:30 am, Debbie’s oxygen alarm went off and by the time I got to the
oxygen room to turn everything on and got back to Deb she was at 82 %
oxygen level (30-60 seconds). Debbie was still asleep and not panting
or taking short breathes or holding her mouth closed. It was more like a
mucus plug. My first thought was using the cough assist machine. I put
the mask on Debbie’s face and counted 1, 2, 3, and then turned to
exhale and 1, 2, 3 out. We did this three times and never got a cough
but moved a lot of air around and oxygen level came back to the 90’s.
Debbie never woke up all of this time and next was to move to the other
side of Deb’s bed and do 2 breathing treatments in a row. I have
connected an oxygen line to the mast so Deb is more relaxed and takes
deeper breathes and more getting more Albuterol medicine into her
lungs. With all this work and over an hour, Debbie never woke up and
stats came up to 98 %. This is the first night I had to use the cough
assist machine that was not for therapy.
HARD LONG DAY
January 3, 2007
Jerrall-
I hope this will be a better year or I will be able to accept the out come.
At the start of the New Year, I am reminded of a couple of people who
has asked me if they did me a favor saving Debbie’s life. The answer
has always been the same, if I did not ever get this time with Debbie to
say good bye then where would I be and would I ever be able to accept
the loss. As long as I understand this is a second chance and keep
every day in perspective, this will be a great year.
Debbie is still considered to be in a Minimally Conscious State. Debbie
has good and bad days. I see vary slow improvements and when Deb
was sick in July of 2006, she has only gotten ¼ of her strength back.
But I see every day Debbie is not giving up and not complaining.
Mentally, Debbie is one of the strongest people I have ever met. Both
Amber and Krystal are like Debbie in this way there cup is always ½
empty. I watch Debbie in therapy try so hard and even drop what is in
her hand but still Debbie does not give up.
It is 50/ 50 that Debbie will come out of this, but I see how far Debbie has
come and I know that time is the real issue. Therapy, meds, and Doctors
all can help, but this is one step Debbie has to take for herself and I will
be here helping any way I can. Like Forest Gump said a best friend
does not happen very often. I have to take a break when Debbie is
jumping so much. She needed to lay on our time machine mat under a
warm blanket and just hold her so she knows she is not alone.
After an hour of weight through Deb’s left side, her fingers are so soft
and warm and her neck is turned all the way to the left (gravity). Also I
checked Deb’s bottom and tonight is the night. This will help a lot and
we are back up for a little while.
Kris just called and said her boyfriend of 6 years mom was in the hospital
and tomorrow she wants to go say goodbye at noon. Ray’s mom does
not want to be on life support and tomorrow they will put her to sleep and
unplug the machines. Before this happens Krystal wants to say good
bye and I want to take her. This is an issue we may face this year also.
This is too close to home I love Ray and Krystal so much there are no
words.
Debbie still knows who we are most days. I can tell every day Debbie is
more and more in a fog. The last CT-Scans show atrophy of the Brain
Stem. Now I have to find out over the past 4 years how fast it is
occurring. Still at night Debbie tries to talk and in the mornings Debbie
does not know where she is. What I miss is Debbie’s humor when she
sees something funny. I feel as if there is no emotion. But every time
she sees her friend Gerald, Debbie smiles. This is great; scar tissue at
the Brain stem is the main issue just getting the signal through to the
rest of the body is the goal.
As long as Debbie can breathe on or off oxygen, she will be with us. I do
not think a ventilator is any quality of life and we will be where Ray is
tonight. No one would want to live like that. Sometimes you love
someone so much you have to let them go, even though it is so painful.
Whether Debbie is with us or not, Debbie will always be with us, just like
the air you breathe and can not see.
Different kind of day.
