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Jerrall-
It has been a long time since I have wrote down my feelings. I will not
let this happen again. Have you every felt lost and not know which way
to turn. That is what the last two weeks have been. We have come to
the turning point in Debbie’s LIFE. I will not let her go with out a fight.
Debbie has a specialist for every part of her body now. I have become
the new bottom line in Deb’s care {case manager}. Debbie has a total
of three case managers what is missing is communication between
each other and that is where I come in. I am not making friends but on
a professional level we all have the same goals, Debbie’s best interest
at first. All so I have had a Palliative care doctor do an evaluation.
She did say Debbie is a chronic case and she come help in the
recovery case especially in the repertory part. This is not hospice. If
Debbie only has a few days, months or years they will be the best
years I can provide. I have gone back to work a few hours a day as a
consultant. Out of the past 10 days I have missed 7 days because
Debbie has had issues or to teach a new nurse how to care for
Debbie. I will not leave Debbie with any one. The nurses start at 7 am
until 11 pm which allows me to have some distant from Debbie. I told
Heather the nurse supervisor I do not mind holding Debbie’s hand
when she passes but I do not want to be holding Debbie’s head doing
a breathing treatment when that time comes. The rehab doctors tell
me brain injury patient pass from 4 am to 6 am which is ok. To help
this Debbie is on a 1 liter flow of oxygen all night long which has worked
the last week at night. I no longer dread bed time any longer. Some
nights when needed I still get to sleep in Debbie bed with her and Deb
falls asleep on my arm and if I try to get up Debbie wakes up.
Since Amber and Krystal have their own life’s I had no choice to bring
nursing care I am only one person. This may be the best thing for
Debbie any way. The girls still come around and this means more to
Debbie than seeing them every day. I can tell in the last two weeks
Debbie is more a where of her surroundings because of all the nurses.
Tonight Debbie and I stood for 30 minutes on the tilt table and I would
out one lead of the I-pod in her ear and one in my ear. It was great
and Debbie’s legs quite jumping when we were done. Also it helped
Debbie have a 30” bm tonight.
May 27, 2007
Jerrall-
Debbie went to sleep last night at 11:30 pm and had a good night until
4 am. Then we had a hot flash issue all covers had to come off and all
of the braces and even Deb’s shirt. At the same Debbie’s oxygen level
dropped below 90% and it took a 4 liter flow to get back up in the 90’s.
I keep cool with wash clothes on Debbie and Debbie was awake the
whole time but not fighting me. After a couple of hour I got Debbie
dressed and put back together and 2 mg of Diazepam and Debbie
went back to sleep. On room air 90% was the best it would get so I
keep a 2 liter flow on Deb for almost 2 hours. I got 400cc of secretions
out of Debbie during the night, clear to cloudy with white chunks. By
10:30 am the rest of the day was normal.
May 26, 2007
Jerrall-
I missed work again had to train a new nurse again and she never
came back. What a waste of time. Beside that Debbie had a great
day. The 1 liter flow all night long and the extra meds around 5 am
really seam to help. Debbie appears more alert with all of the new
people in her life which is a great thing.
May 25, 2007
Jerrall-
Today at 2 pm Debbie had a temperature of 100.9 for no reason I
wonder if it is connected with the hot flashes. The nurses had about
25 suctions today which sound a lot to me but stats never dropped.
May 24, 2007
Jerrall-
I started giving 1 mg Ativan at 5 am before Debbie woke up to help
prevent these early morning oxygen drops and it worked. Today was a
calm good day for Debbie. We could use more days like today.
May 23, 2007
Jerrall-
Again at 6 am the o2 alarm went off again and this has only happened
a few times in 4 years and now twice in two days. The readings were
90% and a pulse of 115. This only lasted until 10 am and then every
was back to normal. Last night I got 350cc of yellow cloudy secretions
last night. The rest of the day went great with the nurses.
Sussanne came today and had a great visit with Debbie. OT just will
not give up.
May 22, 2007
Jerrall-
At 6:30 am the pulse/ox alarm went off even with Debbie wearing it at a
1 liter flow. The oxygen sensor showed 90% and a pulse of 108. After
peaking at 9 am with a pulse of 110 everything went back to normal. I
can control Debbie’s oxygen levels but I have no idea about the heart.
May 21, 2007
Jerrall-
We saw the new coma doctor and dc Provigil due to high heart rate in
the mornings. Also he said give .25 clonazepam for a prn drug but
only once in a 24 hour period. Also he started decreasing
Bromocriptine over the next three months. Blood work was ordered to
see if we could go up on the oral mussel relaxers. Also with all these
oxygen drops he wants Debbie to wear a nasal canal on a one liter all
night long to help with the drops.
Last night Debbie dropped to 85% and with a 6 liter flow I could only
bring her up to 94%. Thank goodness this only lasted two hours.
Debbie’s mouth was dry and no secretions were not the issue it was
Nero. Again during stats dropped so I put Debbie on a nasal canal on
a 4 liter flow and all Debbie would come up to was 94%. At noon for no
reason Debbie had a 101 temperature for no reason.
May 20, 2007
Jerrall-
Today was normal except at noon Debbie had 93% oxygen level, 102
temperature, pulse of 105 and normal blood pressure. In two hours
every thing went back to normal. Debbie has been having hot flashes
for 2 months now.
May 19, 2007
Jerrall-
I missed another day of work Debbie was at 92% and a pulse around a
100 at 7 am and we have a different nurse so I have to train her
instead of calling 911. It took a 2 liter flow a ½ hour to come up to
95%. This afternoon was normal. It is like turning on and off a light
bulb. I got 300 cc of secretions tonight that was cloudy in color.
May 18, 2007
Jerrall-
Debbie had an issue with her stats this morning and I had to miss work
and train a new nurse. Debbie’s pulse was at 100 this morning. This
afternoon was a lot better.
May 17, 2007
Jerrall-
Debbie slept well last night 11:30 pm until 4 am except at 4 am the
pulse/ox alarm was going off. Debbie’s stat were dropping fast the
alarm started at 90% and by the time I got the oxygen turned on
Debbie was at 85% and still dropping. I gave Debbie a 6 litter flow for
15 minutes and slowly Deb came up to 94 %. I remove the extra
oxygen and Debbie was able to hold her own. What was different there
was no saliva or mucus plug. I did 10 minutes of chest percussion and
it was like Debbie’s brain was not telling her lungs to work. I did want to
put Debbie ever on a ventilator and keeping an extra oxygen supply for
a day or more would even make Debbie’s lungs weaker. We are going
thru a tough point of this brain injury at this point. It has to get better.
I started back part time to work Monday of this week and the nurses
are with Debbie 7 am until 11 pm and this is a learning curve for all of
us. The Doctors are telling me that Debbie is so chronic of a case she
needs 24 hour professional care and even respiratory therapy several
times a day. In the next week we will see what changes are to be made.
Today I have seen Debbie several times and Debbie had a pulse of 77
which means she is not in pain and adjusting to these changes at the
same time. The last three nights I have been able to sleep back in
Debbie’s bedroom and I end up in her bed but at least we are together
again since Jan 19. 2007.
Amber called me at 7:30 pm and said Debbie was doing good and
appeared to like all of the new people around. Debbie can tell every
one is there to help and that makes all the difference. To night Amber
and the nurse gave Debbie a shower for the first time and it went
great. I will be home by 8 pm and can not wait to see Debbie. She
always looks glade to see me and gives me a kiss when I leave for work.
May 16, 2007
Jerrall-
Today may have been one of the most important days of Debbie’s life.
Dr. Crook with palliative care came to our home to evil Debbie’s
condition. While the doctor was here for 2 ½ hours Debbie had one of
her receptor issues in the low 90’s. Krystal came and asked me what
the nurse should do and I said put her in here hospital bed because all
of the equipment is in there. The doctor agreed except there was no
room for the ceiling lift so I had to carry Debbie to the bed. This was a
good example for the doctor to see but at a cost for Debbie to go thru.
It was 6 pm and the first time for Debbie to be in bed that early. The
doctor got all of the information from use and said now all she needs is
hospital records. Who knows how long that will take? But you have to
start some where. This group of doctors is about making the family
and patent comfortable and able to remain in our home with no
hospitals. This is about giving Debbie a higher quality of life which
could be years and what we are doing know is not working so we have
nothing to lose and everything to gain. After 2 hours in bed Debbie
was ok and got up for the rest of a normal night.
May 15, 2007
Jerrall-
Today was more training. I hope we can keep the same nurses
because I spent every day training nurses and they only stay for one
day. The lowest Debbie’s oxygen level was 93% at 8 am.
May 14, 2007
Jerrall-
Debbie only slept 4 hours last night. Day time nursing started today
7am until 11pm. Most of the day was spent training the nurses.
Debbie’s stats stayed normal.
May 13, 2007
Jerrall-
Today is Mothers day and I wanted to take Debbie to the mountains
and water fall. Yesterday I met a man and he inspired me so much that
I took Debbie and Krystal to his church service. This was the first time
in church in 30 years. When they were singing Debbie was stumping
her right foot to the music. There was a strong presents in the church
like I have never felt. I even took Debbie and Krystal back for the night
service. This will be our last weekend without the nurses. I think the
three of us had a great day.
May 12, 2007
Jerrall-
This morning Debbie woke up at 4 am not wild but could not go back to
sleep. The nurse though I was crazy I show up at the same time
Debbie woke up. I do not know why it was just mint to be.
I got Debbie up in her wheelchair and we went to the living room and
watched a DVD. We saw SERENDIPITY for the first time since the
accident. We saw this movie March o3 and were to go to the outer
banks of North Carolina the week 4-9-03. Are house was named
Serendipity after the movie. We never made the trip because of the
accident Debbie was in a coma 4-9-03 fighting for her life and I never
missed visitation every 4 hours for what seemed like for ever. This
morning I put my hand on my chair by her wheelchair and Debbie
reached over and held my hand for what seemed like hours. Debbie
still often lets me know she is in there. Debbie is not sick today like the
past few days so tomorrow Mothers Day if today goes well I will take
Debbie to the mountains by a river where we spent lots of time before
the accident just for a day trip. Keep my fingers crossed.
May 10, 2007
Jerrall-
It is so hard to say good bye in just a few words but just amagin saying
good bye every day of every day over years. The brain injury will not
take Debbie from me but losing ½ a lung and being immobile to taking
the breath away from Deb one day at a time. Today I have had Debbie’
s specialist actual call me in person on the phone. This would not
happen if it was not important and they say I am doing every thing right
and they could not give Debbie any better care. Most people think I
am a doctor but I am just a man to much in love and I have no idea
what I will do when this is over.
Debbie could last many days or years but I will make every moment
count and I will try to have no regrets when this is over.
Today has been one of them hard days words can not tell the really of
it all.
May 9, 2007
Jerrall-
We have never had a day like before to day and we understand the
hospital ER has no idea of how to do anything except Debbie stable. I
believe the hospital has a 15 liter flow.
This morning the nurse watched me do all of the needed respiratory
work and then watched me put Debbie in her wheelchair and that
Debbie to the living room and proceed with needed respiratory work.
The said I have noticed nursing does not do respiratory work unless it
is needed right now before respiratory workers can get on location the
do the required work needed. Her answer was in the hospital every
one has there own job and to do some one else job is not acceptable.
We are at home and this issue lasted until 4:30 pm and I know the
nurse is off duty at 7 am but if the EMT do not know what to do then
what is the answer. This issue will be resolved quickly or Debbie will
choke to death and there will be no more problem.
This morning Debbie’s mouth was extra dry in here mouth and causing
the secretions to thick to be able to suction or for Debbie to move on
her own. This dryness occurred during the night and the oral care the
nurse on duty was reasonable for. Even before she left the house
went she was off work she new we were having an issues but nothing
was done to help.
In the last three days I have only been able to sleep a ½ hour at a time
because I had to keep a Constance check on Debbie and her
conditions because of what I saw each time I would check on Debbie. I
do not want any problems and I know how hard it is to do this type of
work but I do know what is acceptable and what is not. I have been told
one day the door to Debbie’s bedroom will be locked and I will be told
when to come back.
What made this morning different was with oral care and several
breathing treatments and a constant oxygen flow with a face mask
Debbie’s states were 95 % and below and her pulse was 115 to 125. I
saw in the hospital ER a few weeks ago all that can be done is to keep
the air way clear and the oxygen stats above 90 %. So that is what we
did all day today until Debbie just wore her self out and went to sleep
with out extra meds. I keep her at 94 % and pulse of 84. At 4:30 pm
Debbie became able to hold her stats with out extra supports so I feel it
is safe to put Debbie to bed in her special room with all of the monitors
needed. I pray this will be a short night.
May 8, 2007
Jerrall-
It has been a long struggle but I am at the top of the hill where I can
finally see peace at the end of the task. I have a lot more hurtles to go
but the focus is on the right tract. If any one would tell you this is the
way your life would be tomorrow there is no way you could ever know
the scope it would include. There is no way to prepare yourself for
something like this but before you can really help someone else you
have to make peace from with in. This takes time [years] and faith.
Being a spouse instead of a child it is none the less but at the same
time different. It has taken me 4 years to she the pattern Debbie’s life
is in and how to help the most. When others see there is not going to
be complete improvement they loss faith and will tell you this is good as
it is going to get and Debbie will have good days and bad days. This is
some what true but not the way it has to be. Every brain injury is
different but if you invest the time even years you will get out what you
put in. It might not be what you think you should get but it is about
being happy with what you have and know it could be worse. There will
still be great time a head not what you though when you started out but
still great in a different way. The first step begins from deep with in
you. May be from some where you did not know you had to start with.
This is not the life for everyone but you will get more back than you will
every put in.
April of 03 my life ended as I knew it and from then on I live the life
minute for minute that Debbie does. This is the only way I know how to
protect her and help her recovery at the same time. I have met a lot of
people in the last four 4 years and find myself vary lucky or blessed. I
wanted to get this wrote down so I could put it in my past but still never
forget it at the same time.
Debbie has been doing great for the last several days. Since we have
been doing the breathing treatments several times a day instead of
getting 3 canisters a day of secretions we have maybe only a half of a
canister a day.
Also I have learned that Debbie has her most or worst oxygen drops
early in the mornings. So with no clock set some how I have been
waking up on my own at 5 to 5:30 am and checking on Debbie. The
nurse is in the kitchen getting meds and breakfast for Debbie to have
at 6 am. Well Debbie has been holding her potty all night for a while
now and when Debbie is a sleep and the nurse starts to feed Deb she
goes potty and wakes up and then when the nurse rolls Debbie over all
of the secretions that have collected thru the night hit Debbie all at
once all the issues begin. I am only a husband not a doctor but it did
not take long to understand what was going on. For the last week I
clear Debbie’s air way before the nurse evens comes into the room.
Then when Debbie potties during breakfast and the nurse rolls her
over at a 40 degree angle to the head of the bed I am there to catch
and support Debbie’s head and tell her what is going on. Some time
Debbie will go back to sleep. Now when Debbie is on her back again
and the nurse is finishing the meds and food I check Debbie’s oxygen
level because the nurse turn the pulse ox off when she is changing
Debbie’s depends. For the last week Debbie has been jumping
excessively with a pulse of around a 100 and an oxygen level of below
93 %. Then I get in bed with her to calm her down and then Debbie
starts moving her hip and shoulders even though she is partly
paralyzed. After 5 hours in the bed Debbie gets vary stiff. So for the
last week I get Debbie up in her wheelchair at 6:30 am and take her
into the living room and do oral care and recheck Debbie’s oxygen
level. It is in the low 90’s so we do a breathing treatment and wears an
oxygen mask at 8 liter flow and still I can not get the oxygen level above
95 % and pulse below 98. After about an hour Debbie starts to calm
down and take slower and longer breaths and the stats start to improve.
This morning I told the nurse that they only do oral care or respiratory
only when required. She answered that it is because at the hospital
every one has there own job. I let it at that not wanting to cause any
trouble for Debbie. But do you think an untrained husband should
have to do 80 % of what it takes to keep Debbie alive everyday and
night. One day I will find the right person to talk to about this issue. I
just got Doctors orders for more care for Debbie so we can live more of
a normal life for both Debbie and me. Debbie is going to require
special trained care for the rest of her life and we are going to live
together until the end no matter what it takes or if I never work again.
What is important to me has changed 360 degrees and Debbie’s
needs will always come first. I am just lucky our kids are grown and to
of had the family life we had for 44 years. Some times I get so tired on
20 to 35 hours with out no sleep and not hearing Debbie voice for over
4 years I miss her so much it hurts so much. Even to see Debbie jump
and choke for air a little of me dies each day but with so many people
trying to help I can not stay down for more than a few hours at a time.
It is unbelievable home many people ones life can touch. You know
who you are and I could not have made it with out every ones help I will
never be able to repay every one for there kindness. Thank You for
what counts.
Jerrall
May 7, 2007
Jerrall-
This morning started early today for regular causes. There was no
emergency. For some reason I still check on Debbie every few hours
during the night and in the morning about 5:30 am I want to see if
Debbie is awake, wet or asleep before breakfast. I think I just love
Debbie to much and care too much about how she is feeling. With a
brain injury there is no way to tell if Debbie remembers where she is
each morning. I just want to make this transition as easy as possible.
Small things are getting better with time and I am not losing my mind.
The feeling Debbie give me every day there are no word to explain. I
am one of the luckiest men in the world to be able to experience all of
these new feels.
Amber has found that special person even though all of this she has
endured with Debbie. This man is like a dream come true he makes
Amber feel so special and he is willing to get involved with Debbie and
her care. He goes to church, loves to ballroom dance and most of all
his is there for Amber when we have the rough times. They are to be
married the first week of June in Charleston, SC. Amber wants a small
wedding just 6 people. Even the two families are not invited. Amber
knows all of my funds go for Debbie’s care and funds are low. I wish
Amber could wait until August and make this the special days that it is
or could be. Amber and her new husband have an apartment and are
starting like all of us with there whole life ahead of there. Follow your
dream always and not ever day will be the best just never go to bed
angry and both of you will have to work your hardest.
The first of June Krystal and two other girls are moving into a new town
house new college. So in one more mouth all of are lives will be taken
to the next step of life? I am trying to arrange extra help for Debbie
and myself. We all have had a good 4 years and the next 4 years will
be even better.
May 6, 2007
Jerrall-
Today Brenda came and spent 4 hours with Debbie.
May 4, 2007
Jerrall-
Today is one of the best day ever. Debbie was extra calm all day with
out extra meds. This morning we took Debbie to her friend Lynn Taylor
for a peel and a facial. This relaxed Debbie so much it was like Debbie
was a new woman. This was like old times and we try to do this every 4
to 6 weeks. When we were done we came back home to get warmer
dressed and have lunch and meds. Today is a cloudy, windy and cool
day but nothing will keep us home. Next Krystal wanted me to take her
to Fuddruckers for lunch so the three of us was off again. Debbie is
still not eating and it does not bother me the stares just as lone as
Debbie can be included. I can tell it helps for us to be together and
Debbie used to people again. We have not made it to a support
meeting in 6 months but with the warmer weather I hope we can get
started back again.
Next Krystal wanted to take Debbie to Best Buy and get some DVD
movies. Debbie has so little pleasures in her life movies are one of her
best escapes from this whole issue. We found several but the ones 40
years old will have to be ordered. To night after a movie it was time to
get Debbie ready for bed and I wanted to try some thing new.
At 10:00 pm I got Debbie ready to stand before we went to bed. This
means shirt, shoes and her work out pants. Time does not mean
anything to Debbie or me it is more about what we get done in a day
time. So I got Debbie all stretched out and laying on the tilt table and
started putting on the shims at her ankles and then the two straps for
safety. By 10:30 pm we were ready to get standing. I raised Debbie
slowly and could the legs react to the load I was putting on them in a
good way. When Debbie was standing at 85 degrees we were eye to
eye because the stander makes Debbie a foot tall and that a lone had
to make Debbie feel great. We stood there for a half hour looking into
the mirror and then at each other. Debbie’s legs never got tired or
started to shake and if the pressure was not an issue with the toe
Debbie could of stood longer. The girls gave me an I-Pod for
Christmas a few years back. I would take one ear piece and put the
other ear piece in Debbie’s ear so I would know what she was hearing
and how loud. Debbie never once took the ear piece from her ear. By
the end of the ½ hour Debbie had her right arm around my neck trying
to hold up her upper body which was showing great fatigue. There are
no words to explain how good this made me feel or the connection we
were making even with out words. The nurse asked me the next
morning what I gave Debbie because Debbie slept better than she ever
has. I just smiled the nurse would never understand. We are going to
make this part of are bed time routine.
A vary great end to a super day, Thank You Debbie!!
May 3, 2007
Jerrall-
The most impetrating thing happened today. For the first time in 7
mouths Debbie was able to stand on her own tow feet for thirty five
minutes. This is has to the new oral muscles relaxers and the new
baclofen setting. Just this small thing you could an improvement right
away in Debbie no more kicking or jumping.
Krystal always wants me to get mom out of the house. So today we
took Debbie to her first restaurant in a long time. Debbie still can not
eat anything but Krystal ate like I had not fed her since she has been
home form college. After that we went to Home Depot and looked for
Ideas for Krystal’s new town house. It is suppose to be finished by
June 1st. I think I am happier than Krystal after it. Krystal had just
finished one move from the dorm. For some reason when we got home
I was so tired I let Debbie watch TV and I laid down by her on the sofa
with one hand on her at all times. Amber came at 9:15 pm and helped
with a shower.
When I and the two girls got Debbie to bed it was all I could do to hold
her right leg down while they dried Debbie’s hair. When Bernice got
here I went to bed and Amber held Debbie’s leg.
Suction was only one canister instead of three. All of Debbie’s stats
when she went to bed were great, but Debbie did not look tired.
May 2, 2007
Jerrall-
This morning Bernice came to the living room and said Mr. Rich Debbie’
s o2 stats have dropped below 85 %. This was 6:30 am and Bernice
finished the meds on her side of the bed and I went to the other side to
evaluate Debbie. First thing I went to the oxygen room and turned on
the large tank to an 8 liter flow and then back to Debbie and put on a
face mask. As Debbie’s states came up I would reduce the liter flow.
After 10 minutes Debbie was back to the upper 90’s and a two liter flow
was fine. I left Debbie on a two liter flow for a ½ hour and then every
thing was back to normal.
From what I could tell when Bernice turned Debbie on her side to
change her depends, suction was not done first and Debbie had all of
the extra secretions hit her all at once. The best thing was Debbie was
able to clear her air ways by herself before for I could get to her. The
extra oxygen helped Debbie to recover faster and feel like she was not
choking. Every thing turned out ok but it could have been a lot worst.
OT Susanne came today and worked with Debbie and Amber. I can
not say every thing was great but Debbie still has not giving up.
Debbie has had more oxygen drops then ever before 3 out of 5 days.
Debbie is still not reaching out or putting the ball in the cup but is able
to do some flash cards.