 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
March 30, 2007
Jerrall-
This morning I checked on Debbie at 6 am and she was awake in her
braces. Debbie was jumping or kicking so much she was wet with sweat
and a temperature of 100.5. I checked the chart and Debbie had been
awake since 4:30 am. Bernice wanted me to get some sleep but I
always tell nursing to wake me up and I will get Debbie up in her
wheelchair and they can watch TV together and I will go back to sleep.
To night Debbie went to bed at midnight she had a new nurse and
report took extra time. Debbie went to sleep at 1 am but had a mucus
plug twice and she woke up at 2:30 am. I took off Debbie’s braces and
put her glasses back on and told her I was going to lay down with her. I
went and used the bathroom while the nurse was at Deb’s bedside.
When I came back in the room Debbie was going to sleep again. So the
nurse told me to go to my bed and get some sleep if only for a little
while. One thing about a brain injury person nothing is ever the same or
you can not tell what they are thinking and 1 hour sleep is like 8 hours
sleep to us. I have worked with Debbie for 20 hours straight and this is
a normal day. After 4 year next week I do not get tired or hungry any
more I have to make my self sleep or eat. My days, months and years
go by so fast. Debbie is getting better in cognition but weaker in muscle
as time goes by. There is no book to follow and I can only take one day
at a time. We have a long range plan but ask things change plans have
to change. This will be a life time recovery and every one has to be
happy with what you have at any one time and as improvements occur it
is some thing to keep you motivated and not disappointed.
March 29, 2007
Jerrall-
First thing I want every one to know is Debbie is ok and at home.
Debbie has had a low temperature for a week now, low oxygen stats and
increased saliva which needs to be suction often to keep Debbie’s lungs
clear. The pic line was removed last Friday and the site looks great.
This morning Debbie had a temperature of 100.5 so to be on the safe
side I took Debbie to the doctor. The doc did lung x-rays and every
thing was fine. He did blood lab work and every thing was fine. Could
not tell where the temperature was coming from but it was probably a
virus like I had and it will just have to run the coarse.
Last night Bernice had to suction Debbie 11 times while Debbie was a
sleep. This is double than the night before. Also a new nurse trained
with Bernice so they would know what to expect from Debbie. No one
has came back a second time other than Bernice I just wonder why.
To night Amber came to give Debbie a shower and fix Debbie’s hair.
Debbie went to sleep soon after her meds and tube feed. I got to bed
an hour early also.
March 28, 2007
Jerrall-
Debbie for sure has the virus I had last week except for throwing up.
Debbie’s temperature has been just under 100 for 5 days. Debbie
never sleeps during the day but this morning Debbie woke early around
6 am but was distressed. Last night Debbie had
Diarrhea before bed and this morning I carried Deb to the bath room
and she had firmer stool. I could see a look of relief on Debbie’s face
and when I took her back to her bed I checked her again and Deb went
some more in a controlled area. I got Debbie put back together and I
got into bed with Deb on my side and she went back to sleep for a while
as long as I would hold on to her. When we got up Debbie has been
tired all day with extra suction needed but no extra meds. To night
hopefully will be a good night and Bernice will be here at 11 pm and may
be she will have some ideas. Debbie would look at her flash card today
but not lip the words. Oxygen stats are still staying low and a low grade
temperature. Tomorrow home health nurse will come and take blood
samples for the new brain rehab doctor. April 4 we go to a urine
specialist and April 16 back to the new rehab doctor.
Last when we were putting Debbie to bed Amber told me that her boy
friend asked her to marry him this summer. I do not know how this will
affect Debbie in the future. Every thing is changing for Debbie in the
next month but that is out of my control and all I can do is take one day
at a time. With both girls gone Debbie and I do not need this 4 bedroom
house on a ½ acre lot to keep up with. I wish we could find a 2 bedroom
unit in a concrete building with an elevator because of the risk of fire.
By July all of the changes should be complete. Debbie may not be
eating or talking by then but hopefully we can be settled in some where
that will last for years. Therapy will be a life time issue for Debbie but
only one day at a time. I make these notes so I can look back and see
how far Debbie has come and if it helps some one else Debbie’s
accident was not for nothing. This is not how I planed to spend
retirement but if I were not with Debbie 24 hours a day I would miss what
is happening with Debbie’s recovery. In 2001 for Christmas the war had
just started and I gave Debbie a refrigerator magnet that says best
friend forever and Debbie always kept it on the refrigerator and today it
is still there as well as I am still here for how ever it takes. For 4 years I
have used paper plates and plastic glasses but last night at bed time I
noticed I was using Debbie favorite mug. No longer does it make me
sad but gives me a feeling that Debbie is still with me and all of the good
times we have had.
Brenda the person that is suppose to help me 14 hour a week during
the day has not called us back. When she came and interviewed with
Debbie she cried several times during her visit. May be like every one
else this is too much to bear every day. Thank god for Bernice from 11
pm until 7 am. The past few weeks since Bernice has been helping with
the laundry and cleaning since I am by myself and for a nurse this is a
big deal.
March 27, 2007
Jerrall-
Last night was Bernice first time back in 4 nights we have missed her
so. Bernice works well with Debbie and I can hear her talking to Debbie
though the night. Debbie had a good night except Deb’ oxygen stats
stayed 95 to 96 % which is low for Debbie. Because of the pollen every
one in the Carolinas are having issues for the last week. Debbie’s
secretions are thick, chunky and a cloudy color. Debbie has had a low
grade fever since Friday night and that was the day the pic line was
removed. Debbie had diarrhea again this morning so I think she may
have what I had except with out a gag reflex Debbie has not thrown up.
Bernice had some thing like this Sunday night and Debbie and I were
alone like old times. When we got up this morning I gave Debbie a
sponge bath and got her dressed in time for Debbie to watch Regis and
Kelly. Debbie has needed suction more than normal but with no
temperature. At 2 pm Brain the PT came and Debbie was too weak to
work with him. Next week April 5 will be the last day for home therapy.
Everyone wants to help but do not know how. The therapists are sad
but time will pass and Debbie will get stronger and there will be another
door open up. Before Debbie does out patient we have to finish
adjusting her meds one drug at a time. Also Debbie has to build her
strength back. All of this I see could take 2 months or more as long as
Debbie does not get any more infections. With each infection I can see
Debbie getting weaker and weaker. Every thing is a time thing and
atrophy is the enemy.
Yesterday afternoon OT came and Debbie responded and Susanne
said she wanted to resert Debbie again until Deb is strong enough to do
out patient. PT is going to discharge Debbie 4-5-07.
It is about 4 pm and Debbie is tired so we are setting in the kitchen tilted
back in her special resting and listening to an old Reiki cd. Debbie
never sleeps during the day she is just resting.
Today Debbie had extra secretions cloudy in color and a temperature of
99.8 which Deb never had with the UTI. Well it is time for a shower so
this post has to end.
March 26, 2007
Jerrall-
Debbie had an ok night and slept 7 hours. I moved my bed into Debbie’
s room because the nurse was sick so we were a long. Since Friday
when the pic line was removed Debbie has had a fever of 99-100.5.
Debbie’s saliva is thicker and cloudy. The worse thing is with 5 liter flow
I can not get Debbie above 98% even after a breathing treatment. With
out oxygen Debbie is only 95 %. Debbie’s normal is 98-100%. A ½
hour ago I checked Debbie’s bottom and diarrhea can out. I do not
think Debbie aspirated in her lungs but has a big cold. If tomorrow
things are not better we will go to the doctor. Tonight I pray Bernice will
be here and give me some ideas.
Today we went to a new doctor and he said he will help us. We will go
back in 3 weeks. He has lied out a plan for the next three months and
only time will tell. This is a public web site and that is all I can say at this
point. There will be complete changes in Debbie’s recovery in the next
few weeks to come. The first step is with new blood work to see where
Debbie’s body is in recovery.
To night Bernice is back for the first time in 4 days so I will get some
sleep to night. No nurses showed up to night and I had to move my bed
back in Debbie’s bed room the first time since January 19 th.
March 25, 2007
Jerrall-
Today is Sunday a day of rest but not for Debbie. A brain injury is a 24
hour and a 7 day a week issue for Debbie. I made breakfast for Krystal
but this is the first weekend Debbie was jumping so much we did not get
to go grocery shopping or outside at all. The trees are beautiful in
North Carolina but the pollen has made the last 5 day hard for Debbie to
breathe. The suction has doubled and Debbie’s throat is raw and
bleeding from all of the oral care. Bernice has been off since Thursday
and we have had 2 new nurses that do not know Debbie at all. Debbie
did not sleep Friday night at all and her pulse was 100 or above and the
new nurse told me to get in bed with Debbie and calm her down. So I
have had to be 24/7 for three nights now. I asked Amber if she could
come over at 7 pm tonight and help me with Debbie because the nurse
is sick tonight and I will be a lone with Debbie tonight. If I would fall a
sleep Debbie would chock to death and that is not fair to Debbie.
Debbie has been vary upset all day even with extra meds. The right
side tremors will not stop no matter what I do and it is because Debbie is
trying to tell me something. We can not lie on the mat to long because
of the secretions and Debbie is too weak to even hold her head up.
Debbie will lose her home therapy 4/4/07 and that is 4 years to the date
of the accident. I am supposed to take Debbie to out patient for evil for
OT, PT and speech but I want the rehab doctor to tell me do this now or
wait until Debbie gets stronger. In the last 4 months since Debbie has
have a UTI she has got so weak Debbie can not hold her head up for
more than 10 minutes. It is not fair to Debbie to have to go to outpatient
therapy at this time but nothing in life is fair. No one can stop the clock
and time is Debbie’s enemy against atrophy. Tomorrow is a big day for
Debbie we will have a 2nd option on the path we follow. Over the next
two weeks I will have to make decisions that will affect all of our lives for
ever. We will loose therapy at home and gains a 14 hour a week CNA to
help where ever Debbie needs are. So we loose 2-4o minute therapist
and gain 12 ½ hours of help for Debbie. Read Debbie books and helps
with standing and do flash cards. We did not ask for the help but it was
made available to Debbie last week from the case manager. There is a
special fund the city has for people like Debbie and without a case
manager no one would know about opportunity. Krystal was her Friday
and Saturday night and did all of the laundry and a lot of cleaning. To
night Amber will be here a help with the shower. This is more than a
one person job and with out the girls Debbie would not have the same
quality of life.
March 23, 2007
Jerrall-
Today are other nurse with rehab came out and removed Debbie’s pic
line. The line had a 1 “blood clot in one side of the pic line. The nurse
flushed the clot out of the line and checked to see if any of the clot was
left in the vain.
To night was the end of a vary hard long jerking day for Debbie. We
had a new nurse and at 11 pm I had Debbie in bed when the nurse got
here but Debbie’s oxygen states was low {93 %} and her pulse was
above a 100. After the nurse feed Debbie every thing was wrong. The
nurse told me to get in bed with Debbie and calm her down so she did
not have to call 911 during the night. I did not sleep all night but Debbie
calmed down and went to sleep in my arms while the nurse watched us
all night long at her desk. It is hard for me to believe this would calm
Debbie down but it was like Debbie knew a new person was in the room
or Deb was not sure where she was. Debbie’s oxygen states stay low all
night 91 to 95 %. I think the pollen is the biggest issue. Debbie’s throat
is blood raw from so many different people doing suction. I am told the
tbi people who dye in rehab dye at night from oxygen issues. Even
though Debbie has night nursing they come and get me for every thing
or I check in on Debbie during the night and help Deb when she needs
me and the nurses are watching not sure what to do. Still if Debbie
goes in the night she will be in my arms. Last night I though I was
dreaming that the pulse ox alarm was going off and when I woke up it
was. The nurse was changing Debbie with her arm brace on and did
not turn off the pulse ox.
March 22, 2007
Jerrall-
This morning Debbie woke up at 4 am when we changed her depends
but was loose when I got Debbie up from bed.
Tonight at 8:30 pm Debbie started jumping and a saliva issue at the
same time. A new nurse will be here tonight
March 21, 2007
Jerrall-
The nurse and I woke Debbie up at 4 am when we were changing Deb’s
depends and Deb could go back to sleep.
We got great news today there is no more urine infections and the pic
line can be removed asp. Debbie has been calm and loose every
morning this week when I get her up. Last week it was like picking up a
tree and took 4 hours to get Debbie loosen up. But Debbie
March 20, 2007
Jerrall-
Last night Debbie only slept 5 hours. When I would check on Deb she
would be a sleep and doing fine but at 6:30 am when I went to do report
with the nurse before she left at 7 am Debbie was sweating, heart rate
almost 100, a temperature of 99.4 and awake and jumping with all of her
braces on in her bed. Temperature was up from all of the excessive
movement under the blankets. Movement was because Debbie had to
go potty. I gave Debbie 100cc of water and triggered her to go potty
and by the time I got Deb cleaned up she was calm. The nurses are not
with Debbie long enough to understand Debbie at this point. I try to tell
them to wake me up when Debbie is jumping so I can access the issue
and Debbie up. Only one nurse has got me up and the others think I
need to get more than 3 hours sleep at one time. I am feeling better this
week and after last week I now realize how tired and sick I was. Debbie’s
case manager is coming on Thursday and I hope we can come up with a
game plan for the next two months. Debbie will lose her home therapy
in a couple of weeks and we have orders to do an out patient evil but
are waiting to get the pick line out. I called primary care doc this
morning about a heads up Wed or Thursday for the results of the urine
test so Debbie can get the pick line off this week if everything is ok.
Debbie has had this line for about 6 weeks and is causing a lot of issues
with everything we do. April 4 I take Debbie to a urine specialist so we
will not have two middle men and things will happen faster next time.
April 4th is the 4 year to date of the accident. For several months
Debbie has jumping for 2 hours before she goes potty and some one
that did not know her would give extra meds and this would not fix the
problem.
When I got Debbie up in the morning the last two days she has been
loose like 2 weeks ago which is great and with no extra meds. I do not
know if it was the lack of range of motion while I was sick or if Debbie
was sick at the same time. All I know is all of my muscles were so weak I
had trouble standing up on my own and no way I could pick Debbie up.
Ms Love your ceiling lift made care possible for Debbie with Krystal last
week. You will never know what a difference you made in Debbie care.
This afternoon PT Brian came and he had Debbie set on the mat on her
own for about 20 minutes before she got so tired it was impossible for
Debbie to hold her head up. There are so many things we take for
granted in every day life. In the next two weeks Debbie will have several
new doctors’ appointments to see what the next steps will be. This may
be a time where every one says all Debbie needs is TIME!
March 19, 2007
Jerrall-
Deb slep 8 hours last night. When I got Deb up this morning she was
loose like 2 weeks ago. No extra meds today. Amber was with Deb 8
hours today to give me a break and catch up on much needed speep.
March 18, 2007
Jerrall-
Deb had a rough day with breathing (mucus plugs) because of the
pollen. A lot of extra meds.
March 17, 2007
Jerrall-
Today is our 32 year anniversary. The years have gone fast. Debbie
had just a ok day with extra meds.
March 16, 2007
Jerrall-
Debbie did not sleep but 2 hours last night. I check on Debbie during
the middle of the night and Debbie was in bed awake and jumping vary
badly. The nurse did not know Deb and what to do. So I always check
on Debbie several times a night and get Debbie up in her wheelchair
when this happens because Debbie will not go back to sleep and meds
will not make a difference. The nurse watched TV with Debbie and told
me to get some more sleep she would stay with Debbie. Debbie has a
main nurse Bernice and she has become like part of the family. Nursing
has been here for 2 months from 11pm until 7 am and it is hard to find
any one willing to work with Debbie. When Debbie does not sleep at
night she is on the next day where Debbie can turn her head or turn on
or off the lights.
Debbie has been on today more than ever when you ask Debbie to
smile she would. Krystal and Debbie had the best day ever. Tonight
the new nurse did not come so Bernice had to work on her night off but
it was midnight before she got here. Krystal helped me get Debbie to
bed and feed Deb while I held her leg down in the bed. Amber moved
out last Saturday and Krystal goes back to college tomorrow after a
week off for spring break. Krystal has been with Debbie all week and I
wonder what next week will be like alone with Debbie.
March 15, 2007
Jerrall-
Today with Krystal’s help I got Debbie to infusion to get Debbie’s IV
dressing changed. Today I feel better but my muscles are still cramping
so much it is not safe for me to do a transfer. There has been 24 hour
nursing here with Debbie the last two days because I have been that
sick I could not take care of myself or be around Debbie. I have never
thrown up for 9 hours straight and then another 2 hours the same
night. Today it is good to be able to take care of Debbie so I must be
feeling better. To night I am still shaking and some thing is not right but
I have to extra time and if I wake up tomorrow we can worry about the
shaking.
Today Debbie only had PT with Brian the leader of Debbie’s therapy.
We always talk honest to each other and I let him know we can only take
one day at a time at this point and the path that will take place over the
next 2 weeks. I want to help Debbie and be discharged for going in the
wrong direction. Out patient therapy is being push on Debbie and after
the pic line and Debbie still has a UTI which will be retested Monday this
is not in Debbie’s best interest and someone has to be willing to draw
the line. Debbie and I have been on our own before a year after
discharge. This time I am not going to let time pass with out making a lot
of noise. This may be why my body is trying to shut down. I love Deb so
much but it is about what is best for Debbie and the way things are
going there will not be nothing let of Debbie but a hollow shell. Debbie
will always have disabilities but we have to find a place to fit in with the
time we have left.
Today Debbie was so tight when I got her up this morning any one could
see how much range of motion Debbie has not had the last two days. In
a week of this Debbie would be so drawn up. With little meds Debbie
needs a lot of extra effort not just some one watching Debbie. My day
goes so fast and I will never have a second chance to give Debbie the
most recovery possible.
March 14, 2007
Jerrall-
I am still sick and having to stay away from Debbie so I do not know what
to.
I know 2 nights ago Debbie had a temperature and I could hear the
nurse suctioning Debbie all night long. Krystal stayed up with them and
said Debbie had a high pulse of 120, a lot of sweating and one oxygen
drop. Today Debbie looks so much better to me from a distance.
Yesterday some how Debbie got her right hand nicked up. There was 2
“ of blood on her pants. Tomorrow things should be back to normal.
March 11, 2007
Jerrall-
Debbie slept great last night all most 7 hours and vary little suction.
Krystal took a shower before going to bed and when Krystal finished she
noticed the nurse was starting to change Debbie’s depends. So Krystal
came and got me and all three of us changed Debbie together and
Debbie did not even wake up and we got all of her braces back on in
record time. Debbie did not potty the rest of the night which means she
has to be felling better.
When Debbie woke up she was tight and starting to jump so I hurried
and got Debbie‘s depends changed and up in her wheelchair as fast as
possible. We went to the living and watched a movie Ground Hog Day
and as time pasted Debbie relaxed and appeared to really enjoy
herself. This morning Debbie is not really with me it is like she does not
remember every morning and as the day goes on things get better. But
today with lunch meds I will give Debbie my Ambien and about 4pm Deb
will be talking one or two word phrases to me. I miss Debbie so much
that some times I give Debbie my Ambien because it wakes her up
instead of making her sleep.
This morning being Sunday I when out side to light the gas grill I always
grill rib eye, beans and scrambled eggs in tortas for Krystal’s breakfast
and all at once the sun came out from behind a cloud it was beautiful
after a long gray winter. I would give anything if Debbie could be more
of her surroundings. It also makes me appreciate how lucky I am to be
able to see the sun.
The day has gone well it took about two hours for the Ambien to work for
Debbie and all of the tremors to stop. Will we were waiting Debbie rested
on the time machine mat and looked out the picture window. In the next
two weeks the leaves will be on the tree and that will mark the fourth
spring time goes so fast. Krystal and I did a lot of spring cleaning on a
third of the house. When it was time for Debbie to get up Krystal and
Deb watched a movie and I took a nap that three hours sleep went fast
last night. In about an hour Krystal came and got me and I changed
Debbie’s depends and Krystal gave Debbie her afternoon cranberry
juice about 4oz. The girls decided to finish the movie and I made Krystal
some crab cakes and prepped stir fry shrimp for dinner. Krystal said
she would spend time with Debbie and I could go out on the screen
porch and make a few notes and see the sun set it may be a bit cool for
Debbie yet. It is nice to get some of my own time but Debbie still is
close. In 15 minutes it will be time for Debbie to eat dinner and meds.
The girls came out on the screen porch for Debbie to eat and enjoy the
sunset with a blanket. Debbie is hearing all of the different kind of birds
and looking around a lot. This is the first time in several months we
have been outside at sunset I remember how much Debbie enjoyed
sunsets.
March 10, 2007
Jerrall-
This morning started at 3:30 am for Debbie and me. Debbie only slept 1
½ hours last night. I came in Debbie’s bedroom at 3:30 am and the
nurse was asleep in her chair and Debbie was wet and jumping and
kicking Deb’s right leg brace was off and even some of her pillows were
wet. I started to get Debbie cleaned up and the nurse heard me and
came over to help me. We did not talk things happen but this is # 2 and
1 more thing and I will be better along with Debbie. I got in bed with
Debbie for a ½ hour but she was to up set to stay in that bed. Next I got
Debbie up in her wheelchair took off the right arm rest and held Debbie’
s right leg to the side while Deb watch TV. It took me 3 hours to get
Debbie calmed down.
Debbie was tired today and did not want to help with anything. Amber
had 2 men over helping her move her things out but Amber will still
come back to visit and help with Debbie. This is the best thing for all of
us Amber really needs a break. Until you live this life no one can
believe how real this is to be with some one you so much that could die
at any time.
I tried to keep Debbie busy in another part of the house watching TV
while all of this was going on.
Tonight has been one of those nights I live for. This evening at 6 pm
Debbie had all ready gone potty and Krystal was feeding Deb while I
gave Deb a breathing treatment. We waited until Debbie had settled
down for about an hour and then Debbie clicked on and was able to
hold her head up with no head rest and even look around. I got Debbie
dressed and we took Krystal’s jeep and went to the mall and Debbie had
too much to look at. Krystal came home for her spring break so we
stopped by the grocery store and got a few special things Krystal loves
to eat. Debbie did great and acted like she was glad not to have to
shop no more. Everyone was so nice to us at 9 pm the store was all
most empty which made it better for Debbie. When we got home Deb
got to enjoy TV before going to bed.
When the nurse came into Debbie’s bedroom tonight I said Debbie this
is Stephanie and she will help us tonight and Debbie waved back at the
nurse and Stephanie was so surprised she had never seen Debbie on
before.
Krystal and I got Deb to bed as the nurse got Deb’s meds we all worked
together as a team and got Debbie to bed in record time and Debbie
was asleep before we finished flushing the pic line.
March 9, 2007
Jerrall-
I have trouble remembering today because of tonight. At 10 pm,
Debbie, Amber, and I we in the bathroom getting Debbie ready for a
shower. Debbie had bad diarrhea from the IV meds. Before we finished
the shower the nurse was here and I told her about Debbie’s day and
then I got Debbie to bed. Then the nurse told me to go in the other
room she was hear now so I did not say anything but this will be the last
time of this kind of respect but Debbie was going to bed this was not the
right time to say anything.
When I checked on Debbie at 3:30 am the nurse was asleep and
Debbie was wet and going crazy. I took care of Deb the rest of the
night.
March 8, 2007
Jerrall-
Last night Debbie only slept one hour all night long and when this
happens the next day Debbie is extra on. So today Debbie understood
more than I wish.
It is getting harder every day not to become a bitter caregiver. This
morning I got a call from Debbie’s rehab doctor’s nurse and it was not
want I wanted to hear. Three weeks ago I was proud Dr Hammond
stepped up to the plate to help Debbie thru this medical system. She
took urine samples and a few days later she had the power to have a
pic line installed at 5 pm on a Friday and the ER give Debbie her first
dose of antibiotic at a competitor hospital. Debbie did her two weeks of
infusion and was able to stay at home and not be admitted to the
hospital. This was great and thank you so much Dr Hammond. The
infection was gone and had Debbie came back to her office for a retest.
That infection was gone but today I am told there is another infection in
the urine and it will have to be a primary care issue this time even
though Debbie has Dr Hammonds pic line in Debbie’s arm. So I took
Debbie to primary care and he said it was too much for him since
Debbie has a brain injury patient and I will have to take Debbie to the
ER.
Well at the ER they were great and gave Debbie a jump start of two IV
antibiotics and a prescription for 10 days I can do at home. Tomorrow I
have to call primary care to see if the meds are right after another day
has pasted with the urine culture test and it confirms what meds will kill
it. So tonight may be great or tomorrow we have to start all over. Even
though the ER was great they think like doctors not like rehab doctors.
The doctor even set down and took the time to talk to me which he did
not have to do. I just asked why this keeps happening. The doctor said
his sister also had a TBI at the age of 16 and at first every thing was ok
but after a while she started having Urine infections and aspiration
pneumonia for no reason. Each time she got sick her immune system
got weaker and weaker. For no reason it is just part of a brain injury.
Not all brain injury are a like but Debbie is 4 years post and going in the
wrong direction. I know all this and make every moment count but at
times it is more than I can stand, I am not superman.
There are two things I learn again today first cranberry juice everyday
will help make the urine system acidier and cut down on infections.
Second pic lines get infections easy if your love one has more than one
infection issues then a port needs to be implanted. It will stay in a
lifetime and give access at any time and they are less likely to get
infected. This information is worth a life and how much is that worth.
We got home at 8 pm tonight and Debbie has been great all day. I am
so glad Deb does not understand every part of all of this. Tonight we
will have 3 hours alone before nursing will be here so we are watching a
movie and Debbie is eating ice for me. Debbie’s mouth gets so dry
since she can not breathe thru her nose because it was broken in the
accident (a deviated sanctum).
March 7, 2007
Jerrall-
Debbie slept 6 hours straight last night with no extra meds. After raising
the head of Deb’s bed to 45 degrees and 10 minutes of oxygen flow with
Debbie a sleep the oxygen dried up the saliva issue. This morning
started early at 5:30 am I do not even set an alarm anymore.
March 6, 2007
Jerrall-
Some times I need a 15 to 30 minute break and then to see Debbie in
so much pain and so confused my heart takes control and I find that
extra energy I have to have to function. Last night no call and no nurse
so I move my bed back into Debbie’s bedroom and got ready for
another long night. About a ½ hour later Amber came in and said the
nurse was on her way 1 and ½ hours late. That’s ok everyone has
problems but this is Debbie’s life and I never depend on any one but
myself.
This morning Debbie got up jumping and Amber has been gone several
days and did not know how to deal with Debbie. As soon as I saw
Debbie I gave her 1 mg Atavan. It took 2 hours to calm down, Amber
wanted to cancel Deb’s day but I knew it just takes time to past thru this
cycle every day. Instead Amber called the coma doctor any way. The
doctor said if we can not handle Debbie take to the ER. This is not an
option and tomorrow the doctor want a micro urine test tomorrow at 11
am. At least some thing will get done to help Debbie. Amber only stay a
few hours and let wild Debbie up to me weather we go to the ER or what
it is not the most important thing in Debbie or her life. I know that Amber
can not stand to see Debbie like this so it is best for everyone that me
and Debbie are alone. One night will be the night but not on my watch I
pray.
It is 7 pm and Debbie is doing fine we are watching the movie Jumanji
and it is helping keep Debbie’s mind off of any thing else.
It is 8 pm and Debbie is starting to kick her right leg and a lot of extra
tone in Debbie’s left side. We are still watching a movie but Debbie’s
meds all running out and I am not to give Deb any extra meds tonight will
not be fun. I just hope Debbie does not have a heart attack or a stroke.
No one knows want is going on inside Debbie’s head but I am the one
that has to hold on to her until this time passes.
There is no way to put into words what it is like too loose your identity in
only a second or how it will effect every one in your life for ever. There
is no way to prepare for any thing like this and I would not wish this on
any one but if this is some thing that happens in ones life go with your
feelings and support them with your all. This is not a journey for every
one but going thru this journey will make you a stronger person inside.
Well it is 12:30 am and Debbie is finally a sleep but having a little
drainage or saliva issue. I always stay up with the nurse until Deb is a
sleep and then try to get 3 to 5 hours myself. Tomorrow we have to go
get a micro urine test at rehab then to infusion to get a new dressing on
the pic line. Debbie does not have a UTI any more but some thing is still
not right. It is an anger issue and kicking her wheelchair and holding
her head down. I did not want to call the doc but Amber can not handle
Debbie jumping no more and she called the doctor today.
In all a good day and Deb got a peel and a facial today.
March 5, 2007
Jerrall-
This morning started at 6am with the sound of Debbie’s alarms going
off. When I went to check Bernice was nerves and working real fast, I
just tried to stay out of her way. Debbie had just finished eating and
Bernice had forgotten to turn off the pulse ox alarms before changing
her depends. Also for got to suction Deb before lowering the head of
her bed. I was just coming into the room so I can just guess but I do
know Deb’s stats were down in the 80’s and Debbie was taking such
little breathes I could not hear them with my stethoscope. I did increase
the ox output level. After 10 minutes Debbie was ok but tired so I let her
rest until 8 am. We exercised in the bed room and did oral care and a
breathing treatment. Went we came out of that room Debbie was setting
up straight with a matching pants suit on. We spent some time in the
kitchen looking out the window and had lunch and meds.
PT Brain came at 1 pm and Debbie was so mad she was stomping her
right foot on her wheelchair and I never could figure out what was
wrong. Debbie did not want to work with Brain either. Now it is 2:30 pm
Debbie is resting on the mat looking out the window. This rest time
made no difference; Debbie is varying upset about something.
Sussanne came at 4 pm and Deb was up in her chair and was willing to
nod her head to Susanne. Therapy was just ok with Susanne every one
could tell Debbie was up set. Amber came in about the same time as
Susanne after a three day trip and I am so tired I just left Debbie with the
girls and went to bed. Two hours later when I woke up this nightmare
was still going on and this is no dream.
I sat beside Debbie with her right arm rest off and her right in my lap and
my other hand on Debbie’s forehead. None of this mattered Debbie just
jumped more and I could do nothing her pain. This went on for more
than an hour and then I lay Deb on the mat on her side and asked
Amber if she would hold on to Debbie I just need to go out side @ 35
degrees just to get away for a few minutes after being with Debbie so
many day straight. People think I am super man but I am just a husband
that does not want to see his wife go though this pain. It is getting so
bad now at night Debbie pulse is 117 which is way out of line. I can see
Debbie having a stroke or hearth attach at any time thank god we have
a nurse 11 pm -7 am.
Debbie may be more a where of her surroundings or waking up more
but Debbie not being able to make her muscles do what she wants is
pushing Debbie and me over the edge. The love I have for Debbie
makes it worse to see Debbie in the situation and not being able to help
when everyone else has given up on her. For better or worst and until
death due us part are word each other depend on. This issue has
broken up our family and only hope and love for each other will bring
use back together when this is over.
Having Debbie at home is so hard but in her case it is the only way I can
make it day to day just some times it gets to be to much. Every one
wants to help but no one knows how. With Debbie this alert the meds
need to be increased to protect Debbie and the people that love her so
much. To night is shower night and then meds and off to bed that is my
Amber is here to night and the nurse will be here at 11 pm and we will
be ready. If Bernice saw Debbie like this she would think we were crazy
and have Debbie committed and Debbie would not live more than a
week. When you wake from a coma it is not like waking up from a nights
sleep. There are a lot of stages you go though and Debbie is in one of
the hardest one. No one can say how long it will last all we can due is
be there for Debbie. Love is measured in actions not words I am told.
March 4, 2007
Jerrall-
Last night Debbie only slept 3 to 4 hours last night but Deb does not
appear tired today. Actually Debbie is extra calm today. It is Sunday
and a rest day for Debbie and a change to get some thing done around
the house. We still have to wait until March 19 to be able to make any
type of plans. Decisions that have to be made this week: out patient,
home health, nursing during day time, and maybe down sizing our
house.
It is hard for me to believe that this is all for Debbie has to do every
day. As soon as it warms up, we need to be outside as much as
possible. To keep busy and not pondering on the issue, I have been
working on an all terrain wheelchair for this spring.
This next week, we have to hire day help for Debbie and get Amber
moved to her loft with her friend.
March 3, 2007
Jerrall-
Debbie had another night of sleeping for only a couple of hours a day
and then she was awake for an hour. When the nurse left Debbie was
awake but still tired so I lie down in Debbie’s bed and put her legs over
mine to provide a great gravity stretch. Debbie only pottied once last
night and then again where Deb got up.
At 9 am the nurse came to took a urine sample and next week we should
hear the results and hopefully get the pic line removed so Debbie can
get back to therapy.
Today has been a day of rest for Debbie. Krystal and Deb together
have watched two movies this after noon. It is great they can have this
time together. Tonight Krystal is washing her car and Debbie and I are
watching the sun go down.
Before bed Debbie had a great shower and appeared so calm. But
once in bed and I checked her blood pressure and it was 150/105 which
in way to high. Tonight we did was the same as every other night except
after 2 hours of pampering Debbie would not go to sleep? I always stay
with the nurse until Debbie’s asleep but some thing was off tonight. With
the nurse at her desk writing her notes I was with Debbie trying to figure
out want was wrong. The last thing I checked was Debbie’s depends
and they were soaked. Deb’s heart rate did not change and the tremors
did not get any worse. So I told the nurse and helped her change
Debbie’s depends and reposition Deb in bed. Now finally it was time for
both of us to go to sleep at 2 am.
March 2, 2007
Jerrall-
Debbie slept for two hours and then was awake for two hours and then
back to sleep maybe 5 hours total sleep but not a quality sleep. I got
Deb up this morning and dressed and oral care all before we left her
bed room. I can tell this is going to be another jumping day all ready. I
have done every thing I know to due and Debbie’s pulse is slow going
up, right now it is 97 bad tremors on right side. In a couple of hour OT
will be here so I just Debbie needs extra meds fast. It took two hours for .
5 Atavan but finally Debbie was calm. I lay down and Amber did both
OT and Then PT also. It had its highs and lows but better than
Wednesday.
When I got up after 1.5 hour nap Debbie was starting to get wild again
and Amber did not know want to do Amber thought it was some thing to
do with Debbie’s ability to breath. Debbie was lying on the mat after
therapy just resting. I could look at her and tell the source of the issue
was Deb had to potty and could not. I turned Deb on her left side and
had Amber to give Deb 4 oz of cranberry juice and 50 cc of water. Just
keeping Debbie in a curled up position on her left side and hold her tight
it did not take long for Debbie to potty. Then every thing was ok except
Deb blood pressure still was going up. Debbie ate ½ hour late but now
every thing is calming down and we are watching movie.
This week I had Debbie’s hip and pelvis x-rayed and the pain before
potty is not due to the bones. Tomorrow a nurse will come to are house
and get a urine sample and we can rule out infection next week. Next
we will need to see a potty doctor. But probably the issue is with the
muscles. I try Reiki massage the way Debbie showed me every day and
use a vibratory up and down all limbs and Debbie’s spine. Even hold
just Deb’s head in my hand while she is lying on the mat for cranial
sacral massage which we had done for several months.
Tonight at 6 pm I got a call from the case manager she had got Debbie
approved for 14 extra hours help a week during the day now that Amber
has moved out. Next week I will have to inter three different agencies if
we do not have enough to do. Tonight with the extra med Debbie is so
calm I think it needs to be added to an every day schedule.
At 7 pm tonight Amber watched Debbie while I made a special dinner for
the girls. Amber has a ball room dance contest in Ashville, NC this
weekend. Krystal is home for the weekend while Amber is gone.
Debbie we have 2 great girls and it shows the way you raised them. Well
it is almost time for bed and a new nurse.
Good Day But Long Day
March 1, 2007
Jerrall-
Debbie slept 7 hours again and held her potty all night long. This
makes the third night in a row. This is also Debbie’s last day to go to
infusion for IV antibiotics. Saturday a nurse will come to the house and
take a urine sample to confirm that the infection is gone. The pic line
can not be removed until there is no more infection. It is hard to except
that with out even knowing Debbie could have an infection or silent
aspirate and could kill her. Today is a sad day for me it is cloudy with
some rain, Debbie is not happy with me and being at infusion and the
nurse telling me I look so tired that Debbie needs to be put in a hospital
every so often for 3 days so I can get some real sleep. Also I was told it
would be in Debbie’s best interest to be sedated from time to time so
she could get so rest to. This nurse has been around for 40 years and
is just trying to help. Ortho this week treated us the same way. I know
Debbie will never be the same and I miss her so much but as long as
Debbie can live with out life support I will be there for Debbie. By March
20 th we will know about therapy and nursing until then just one day at a
time as it comes. I still am not getting tired or hungry and have been
keeping my food down that I do eat. In three weeks I should know if
Debbie and I will be alone or have more help than the past. Also with
the girl gone we do not need this 4 bedroom house just for the two of
use. Not working for 4 years has taken almost all of our retirement we
have not had to sell any thing yet but if Debbie is going to take vary
many more years money will be an issue. I still do not know if my body is
going to shut down before Debbie. Every one is telling to get a living
will. Knowing Debbie over 40 years I fell that we are one person and
can not think beyond today but if some would happen to me where
would be. Some times I think if we both could lie down together and go
to sleep that this would be the best way for this nightmare to end. Some
days like today it is hard to keep my feelings inside. Tomorrow will be a
better day and even if Debbie can not talk to me I have to stay strong
for Debbie and even myself.
We got back from infusion just in time to eat an hour late and then I got
Debbie ready for PT Brain at 2 pm. Debbie was calm, loose and in her
chair with her shoes on. By 3:30 still no PT so I laid Debbie on the mat
and got her undressed. Debbie almost went to sleep on the mat after a
great massage. At 5 pm Debbie got up and watched TV for a while. At
5:30 pm Debbie just clicked on and was so alert and mad she could not
talk. I could see the expressions on Deb’s face and her trying to lip
words. It got worse instead of better. Blood pressure and pulse shot up
and then Debbie was only taking short jerky breaths. It took me until 7
pm to get Debbie calm again. First laid Deb on the mat to reposition
and I saw Deb could not breathe. So got Debbie back up and we went
into Debbie’s bedroom so I could use all of the equipment. I did a
breathing treatment and then 10 minutes of a 5 liter flow of oxygen to
dry up Debbie’s airway I could not get too. Still Debbie is going crazy
and it is dinner time for Debbie so I got her set up watching TV while I
got the food and extra meds. Still that did not stop the tremors but
Debbie’s breathing is better. At 7 pm Debbie is still going crazy so I took
off her right arm rest and put Deb’s right leg in my lap and Debbie
stopped jumping. I do not know the connection but it worked. This week
I saw the x-rays with the ortho doctor and Debbie’s pelvis and hips
looked great. Only the muscle spasm is the problem with the right leg.
If I treat this with meds then Debbie looses cognitive function. It is what
do I