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Jerrall-
Last night Debbie slept from midnight until 6 am but I could not hear Debbie
breathing. We tried a different way to medicate. I guess Deb was over
sedated. I would massage Deb’s throat and reposition Deb’s head and
then suction the back of throat. Then Debbie would start deep breaths and
then I could hear Deb breath like normal. We did this 4 different times. It is
like nothing works I guess we will sleep when Deb does and the rest of the
time who knows. After I got Debbie dressed we just sat at the entry and just
looked at the Christmas tree Deb was looking up and down and I would
hand her ornaments so Deb could see the hand tied ribbons she put on
them years ago. Debbie appeared to understand. Also Debbie held her
potty all night.
Where do I start to day Debbie has been calm and looking around at
everything. Not tracking just looking I wish I could tell what she was
thinking. All day Debbie has only done 15 minutes of therapy and it was on
her Lite Gate. Debbie did well just pushing her foot into the treadmill
without it even on. I do not expect Debbie to just start walking on the tread
mill but just the since of standing has to make her feel like a winner. If
every thing you try to do you can’t after a while I would think you would quit
trying any more.
This morning Jessica Debbie’s case manager came by and we must have
talked for about an hour. Debbie has so many types of doctors and issue
going on at the same time that no one wants to call or talk to me at all.
Then Dee came by and had to listen to me talk for 2 more hours with PT
Brain. Speech therapy is pulling out next Tuesday because Debbie will not
work with her. I can not believe this Debbie follows commands for Brain and
Susanne. May be in 9 more weeks they will give up on Debbie also. I will
never quit even if it is just me and Debbie alone. The first year after
discharge from rehab Speech pulled out after 6 months and PT pulled out
after 10 months and OT quit after a year. For the next year and a half
Debbie was alone but I was not as tired then and Debbie was stronger
then. We can only take one day at a time.
PT still never answered my question about Debbie’s contraction in her
ankles. This type of injury is so hard to watch happen right in front of you
and you can not do anything about it.
Krystal says if mom dies she hopes it is in her sleep. Amber doesn’t say
anything I can tell she is about to have a nervous break down from the
stress. I feel I can get to far away for the house because of Debbie’s
breathing issues. I just hope Debbie does not die in my arms. Since 4/4/03
my life has stopped. I can not eat, I can not sleep more than 3 hours, and I
can not see a life with out Debbie.
I called Nero today to ask for a ct scan to see my Debbie is not able to do
what she could in July 06. In 4 months what could have gone wrong
atrophy of the brain and fluid is filling the void and causing pressure or
want?
I have had several days like today where the team I have assembled have
given up on Debbie’s recovery but still I can not put into words the hurt, the
pain and the feelings that this is as good as it gets. Debbie is a vary
special person, an eagle not a duck, it is up to her how far recovery will go.
I make sure Deb has the equipment she needs and help all I can but the
bottom line is what Debbie makes happen. The prays and supports also will
help Debbie’s recovery more than any therapy possible.
Tonight I was setting next to Debbie feeding her through her peg tube and
a rattle started in her throat before I could finish I had to crush some ice
and give to Debbie. Deb took the ice and chewed it as usual. I repeated
this 4 times and finally Debbie choked, I blew in her mouth and suction out
the blockage in Deb’s throat. This is a several time a day thing I have
learned to live with. Even the doctors say Debbie would not have lasted
this long with out me. I am no doctor but some say they can believe this
has lasted so long. I say it is all Debbie’s will to pull through that makes this
happen. I have no hate towards any one, every one wants to help but don’t
know how. When this is all over I will have no regrets.
November 29, 2006
Jerrall-
Debbie slept well last night what a difference a day makes.
Amber was with Debbie today so I could get some rest. Amber said speech
told her next week will be her last day to come. Tonight we gave Deb a
shower and off to bed with no problems. Amber seamed really tired at her
age this is not where she needs to be. Amber loves her mom so much that
it is taking it’s told on her. No one should have to watch or experience this
slow way to die. We all take one day at a time but to she Deb change one
day at a time is more than Amber should have to do. I worry what I will do
when this is over but Amber I worry for more. She is so much like Debbie
always positive.
PT doesn’t think Debbie will ever walk on her feet but if Amber has anything
to do with it Brain is wrong. Maybe not like you or me but some kind of
independence.
I wish there would not be a Christmas this year. Amber is flying to Naples,
Fla for Christmas but coming home Christmas day to be with her mom.
Who knows if Deb will even be with us next Christmas? I think kids should
grow up and to have there own life and see there parents when they can.
Amber may never get over this and that not right or fair for Amber.
November 28, 2006
Jerrall-
Last night was one of the worst ones in a very long time. Amber helped me
get Debbie to the bathroom and then to bed. I told Amber that Deb’s pulse
was high and that mean pain but Amber did not want to give Deb any extra
meds. To keep from causing trouble I went a long. I lay in my bed and
Debbie lay in her bed and it was dark but I could Deb picking at her lips so I
got a wash cloth and cleaned her lips. Then Debbie was still for ½ hour
and then I could see the tremor start on her left side. Then Deb coughs or
choked and if I was not right there could be more cells lose. I got about 8”
of debris in the suction wand and I look up on Debbie’s pallet and there was
debris the size of a golf ball I had to remove with a tooth brush. Debbie
settled down for a short time and her pulse stayed high. I went a head and
got in bed with Deb hoping this would help. But after suction several more
times we did a breathing treatment also I gave Debbie some extra meds.
This solved the saliva issue but not the tremors. The one thing I know to do
is to roll Debbie over on her left side and get back in bed with her. Finally
around 5 am Debbie went to sleep with her leg wrapped around me and
Deb was holding onto my right arm. I think this is a pain and positioning
issue but who will listen.
This morning I heard Amber leave for school and I was so stiff I could not
move and if I did move Debbie would wake up for sure. At 8:30 am Debbie
finally woke up and we both could get out of that little bed.
I took Debbie in her chair to the entry and let her watch the lights until I had
breakfast ready. I do not know what Deb remembers but she would not
take her eyes off that tree for a ½ hour.
At 9 am while Debbie ate and had meds she watched Regis and Kelly. At
10 am Debbie laid on the mat and we did oral care and face wash. At 11
am I got Debbie up and dressed for the day. Deb looks vary alert and has
a sparkle in her right eye.
At 12:30 pm Dee came and worked with Debbie while I got Debbie’s lunch
ready.
OT Brain came at 2 pm for his session and Debbie was lying on the mat. All
they did was some sitting balance since Deb was sick back in July she gets
tired faster.
At the end they did three feet down transfers. Brian and I talked for a while.
I said on the transfers Debbie contractors in her right foot she was only
standing on her big toe and I wondered what needs to be done next. His
reply at Debbie’s age tending surgery and 6 months of cast on both legs
would not be an option. I asked about dyne splints and Brian said too much
chance of pressure skin break down. He let with no answer except some
people improve and some never improve. I forgot to ask about botox
injections. When I see Brian I need to know what his goal is do we need to
work harder on Debbie’s standing or at this point Debbie will never walk
again. Brain if you do not know who does.
After 3 pm is Debbie’s last therapy so we have laid on the mat twice, just set
and watched the Christmas tree as is this might be are last Christmas.
When you are a lone so much it is hard to hold your head up all the time.
We have worked all are life and know with the kids gone it is supposed to
be are time together but the wheelchair was never in the picture. This is
something that happens to some one else.
Today has been a long day.
Amber got home at 8:30 pm and we gave Debbie a shower and off to bed
early but Deb still has temp in the mid 90’s so tonight we started off with
extra meds and pray.
If Speech and PT do not know what to do with Debbie I hope the next step
comes soon.
November 27, 2006
Amber-
Mom did well in both her therapies today. She is getting much better with
her left arm. She has tiny movement but that is better than none. She put
the rings on great one after another and she made sure they did not fall
off. I had a great day with you mom.
November 26, 2006
Jerrall-
Debbie was asleep by midnight and asleep soon after. No suction needed
tonight or oxygen drops. At least tonight I was not so tired that when Deb
moved her hand to let me know her depends were wet I got started and
finished before Deb woke up completely. It takes about an hour to change
the depends and get the braces back on. When I was finished Debbie was
sound asleep and taking big deep breaths I went ahead and gave Deb a
breathing treatment. Debbie got up at 8:30 am and was a little stiff; it may
be noon before Debbie is ready to start this day. By noon Debbie was
jumping even more. I lay back down on the mat with Debbie and it helped
some. But when Debbie at 2pm I gave her just normal meds and to my
surprise 1 hour later Debbie was as calm as could be. Even Deb’s tongue
was barely moving.
So at 2:30 pm Debbie, Krystal and myself set down and watched a movie
together.
November 25, 2006
Jerrall-
Debbie slept great last night and held her potty all night also. I still changed
Deb depends at 4 am and I did not wake Deb up thank goodness because
she was dry. This has happened three times this week. I can really tell I
need lots of sleep. Deb went to sleep at midnight and woke up around
11am. This has to be great for Debbie. I asked Amber to watch Debbie so I
could get 3 hours sleep before Amber left for the weekend. When I woke
up it was just in time so I could get Debbie dressed and up in her wheelchair
to start the day.
The day is going fast when you do something you enjoy time goes so fast.
We have watched some TV but Debbie’s favorite this is to lie on the mat
and look outside. It is almost like we are time traveler. We watch the leaves
fall then reappear. We do not know what day it is or even the year time
goes so fast. We have good and then we have hard days but overall it is
great for us just be able to be together.
Tonight at 4 pm Deb and I were on the mat stretching and later looking out
the window. I must of fell a sleep when I a woke it was dark and time for
Debbie to eat. As long as I do not lie down every thing is fine. Deb has not
talked to me today and has been extra jumpy. I woke up this morning with a
sour throat but Debbie can not tell me when she does not feel well.
Jumping and shaking is the only way I know some thing is wrong. The
weather has to get better so we do not go crazy in this house. Just now as
Debbie was watching a movie and I was making a few notes Deb made this
sound telling me she needed suction. I can not wonder want Deb’s must
feel depending on others to clear her air way or any thing else she needs. I
will be here for better or worse.
I find people only hear what they want to hear. Medical people say it will
take a long time for Debbie’s recovery. With every one I meet they get tired
before I do. Recovery is a life time process. Today Debbie has changed
several times and if you are not with her all the time how you can help her.
It is 12:30 am and Deb finally a sleep. Putting Deb to bed is the worst part
of my day. By my self it takes 2 hours and with help it takes still an hour.
You have to drug Deb to get her to pass out and hold her down at the same
time. Debbie is so strong with her right side you almost have to lay on it to
keep it still and some one has to do the meds on her left weak side. It is so
sad meds react differently to Deb than a none TBI person. Learning the
right combination has taken years and every one is different. In the morning
Deb is quite and at night trying to talk which makes it harder to give her
meds. If I gave her as much as the doctors want then Deb would be in a
drug induced coma all the time.
November 24, 2006
Jerrall-
Debbie wake up at 7 am and we started are day. Last night went well only
suction and two breathing treatments and oxygen level never went 97%.
Debbie was calm when she woke up and while I made breakfast Debbie look
at the Christmas top to bottom. We watched another movie this morning
and now it is time to do some work out on the mat. When got up about 10
am we were all in the kitchen and there was a knock at the door. Who
could that be Friday after Thanksgiving? It was Uganda, hose and his
nephew. They wanted to help any way they could so Uganda and Amber
did the standing frame.
Hose and his nephew raked and bagged all the leaves in the front yard.
Can you believe these now days no one wants to help each for free. I must
look real bad for people to treat like this. Thank You and I do not know
what to say. It is amazing how many people ones life can touch. I did get to
lay down for 3 ½ hours. But this time Amber had to wake me up so we
could go to Deb’s facial appointment. I am the only one that can lift and put
Deb in the jeep. But I was not allowed to drive. When we got back 2 hours
later I had to go back to sleep for 3 more hours and Amber worked with
Debbie and Deb is still on all day. When I got up at 7 pm I was finally ready
to start my day. That sound backwards ha!
Debbie and I work on the mat and watch the back yard and patio with only
the outside flood lights on Deb loves doing this. At 10 pm I got Deb up in
her chair and as we went to the living room past the entry Debbie was really
watching that tree. So I turned Deb where she could see and got two more
chairs. Deb, Amber and my self set there 1 and ½ hours really looking at
the tree and seeing thing most people will never see. It is time to take a
shower and get Deb off to bed so I better finish. There is no way to put
these feeling into words any.
Debbie you know how much you are loved and missed by everyone!!
November 23, 2006
Jerrall-
Happy Thanksgiving!!!
Well Deb made it to see thanksgiving but last night when we go Debbie to
bed at 10 pm her pulse was115. Needless to say vary wild and extra meds
did not make a difference. Debbie’s pulse was great all night but with this
high pulse Deb must be in pain. I went to sleep and haven’t seen Amber to
see if Deb ever went to sleep. But at 1:15 am I was up for the day. Debbie
would never go back to sleep, I tried everything. Extra meds and formula, I
held her hand and even got in bed with Debbie. The only thing different
was the back of her neck and left hand was sweating. Deb’s pulse always
stayed in the high 90’s. The only thing I can think of is hot flashes. At 4:30
am we got up and started the day, Debbie has never had a cleaner mouth.
We have had meds and breakfast and it is not even 8:30 am I think this is
going to be a long day.
Amber got up at 10 am and the three of us talked for a while and I lay down
at 10:30 am. At least I was able to ser up all night with Debbie and she did
not have to lie in the bed a kicking all night long and alone. The nights
Debbie doesn’t sleep then the next day she is realty with us. S o last night
was a good thing what better on Thanksgiving than all of us be together
and Deb is on.
It is 3 pm now and Debbie is sitting outside and Debbie is looking every
where slow. Debbie has two blankets and I have a coat but the sun shine
feels so good on your skin. It has been so long since Debbie has been this
on. I sure got too much to be thankful for.
Debbie and I are setting the back door and Amber is baking pies and they
smell so good. Debbie sat at the table with use and it was a great meal.
Amber did a great job thanks. With out the girls we would have no
Thanksgiving at all.
I would say Debbie had a good day in all. Debbie was calm all day.
To night after dinner Deb and I watched the movie Titanic on a DVD and
the girls and there friends put up the Christmas tree in the entry while we
watched TV. I think it all went well. During all of this I had to give Debbie
two breathing treatments. It is 9 pm and everything is back to normal. I feel
like the luckiest man in the world. If and when nursing come in the biggest
issue will be meds. We never over med Debbie just to make her sleep or
jumping to stop. Debbie is in a recovery mode at this time and all we have
to do is to give Deb time. Amber and I got Deb to bed by 10:30 pm and a
sleep by 11pm. As Deb watched the movie she kept rubbing her forehead
as if Debbie was having memories from the past or some thing was going
on. Brain injury people do not usefully
have emotions but at the end of the movie Debbie had a few tears in her
left eye even with it partly closed.
All so I noticed if I would take off Deb’s right arm rest and rest her leg on my
knee it would help her to stay calm. I need to get Deb’s pelvis looked at.
November 22, 2006
Jerrall-
Debbie had a good night with only two different suctions needed less than
75cc. At 4 am when I changed Deb’s depends Debbie did not wake up.
After that I noticed Debbie had great deep breathing cycles even better
than when awake so I did an extra breathing treatment. Deb had a shower
last night and was a sleep by midnight and awake by 9 am. Amber worked
with Debbie while I got some sleep this morning.
You know when you need rest when you change Deb’s depends twice the
last two days when they were dry. When I got up 3 hours later OT Susanna
was here and said Deb did great today especial with Debbie’s left hand.
Susanna said with her recertify goals would include E –Stem for the next 9
weeks so she can continue working the left hand. When I have or willing to
have given up on Deb right arm there is Susanna still trying all she can to
help Debbie. Susanna has made a great difference in Deb’s life. I can not
say thank you enough.
Speech came soon after OT and the three of us set in the kitchen and had
a long decision and work with Debbie at the same time. As I understand
Debbie is way over her brain jury and now this is what is left. I do not have
to agree but I understand what Speech is saying. Debbie is want you call
minimal conscience state. Some people never come out of this, some die
and 2 out of ten improve. Now I know the state it helps me to know more
about Debbie’s needs.
Tonight some how both girls are here and they are watching a movie
together. Debbie is calm and doing great. Tomorrow is Thanks Giving.
Amber-
Mom was jumpy with me 2 times today but did a great job in OT class. Her
right arm was so jumpy so we did her left arm. Mom moved her left arm in
and out a tiny bit. She wiggled her fingers a few time too. The therapist
said it was the most she has ever seen mom use her left side.
November 21, 2006
Jerrall-
Debbie slept well last nigh and we were up by 9 am. Debbie was making a
popping noise with her tongue to let me know when she needed me. Today
Deb has a big day today and woke up calm. Dee comes first and wanted to
do some reading to Debbie which Deb loves. I went outside to blow some
leaves and take a break.
Next came PT and they worked on the lite gate for the session PT is not for
sure about the lite gate. Brain is a great PT but what is the next step.
OT Susanna came next and did work with Deb’s Left hand and Deb was
moving it. Susanna has been on leave for three mouths and is just getting
to relearn where Deb is in recovery.
November 20, 2006
Jerrall-
Debbie got to sleep by 11 pm, and stats were great, after going to the
restroom and a great shower. Deb only needed only one breathing
treatment. Deb only needed oral suction the first couple of hour after going
to bed. I kept a close eye all night and Deb made it until 4 am before I had
to change her depends. I think Debbie went back to sleep for a little while
but when I checked at 7 am Deb was mad as a hornet. I asked Amber at 8
am if she could watch Debbie after I gave Deb another breathing treatment.
I slept for three hour and then got Debbie ready to go to her Doctor’s
appointment. First we had to get an X-Ray, then with the lung Doctor to
compare and see want is next. Great news he said no change in Debbie’s
lungs. He told me to relax and do not worry too much. It is normal for
Debbie’s stats to change as long as it not for a long time. If stats change
move and exercise limbs and if they still do not come back move sensor to
another location. The Doctor said I was doing a better job with Debbie than
a nurse could and I need to relax and take one day at a time. Debbie will
still need breathing treatments and a lot of suction but take is just life now.
One day at a time.
Starting tomorrow we will go back to a therapy med should. It will take 2
weeks two get there and 4 weeks of shaking to get back where Debbie was
med wise when she got out of rehab. Today has been a vary long day and
still no one has any answers.
November 19, 2006
Jerrall-
Last night was Debbie’s best night in a while only a 150 cc of secretions all
night. We did not get her to bed until 2:30 am but then she went right to
sleep. Stats stayed great all night and required no suction once a sleep.
Also Deb only needed one breathing treatment at bed time. Krystal stayed
the night and made every twice as fast, Thanks Kris. Deb must have been
tired because Deb did not even wake up when I changed her depends.
This morning Deb did not wake up until 10 am and stats were still good.
This morning Krystal did Debbie’s face while I made Krystal some
breakfast. Then the three of us watched The Parent Trap the movie
together. Debbie appeared to enjoy it as if it was the first Deb has seen it.
About 3 pm Debbie and I laid, stretched and enjoyed the outside from the
den mat. Deb never went to sleep but I could tell that Deb felt safe. I laid
there thinking if we only have days together what is the most important thing
can we do. I know I want to make every minute count.
Tomorrow at 2 pm I will take Debbie back to the hospital and get new X-
Rays of Deb’s lung and then meet with the lung specialist. He will be able to
tell us how much Debbie’s lungs have changed in the last five days.
Nobody can say a time limit but at least what the next step should be.
Today has been a good day for Debbie it is at night when Deb’s oxygen
levels changes and secretions increase. I have been reading about Brain
injury with lung disease. When there is no gag reflex and time is against
your recovery lung disease is common because of immobility. The first
signs have been no gag reflex and increased secretions. Then came
change with oxygen level change in the blood. If a person gets a lung
disease or fibrosis the lungs can change almost over night. So can live for
years and some last only 2 months. No one knows this is where faith is all
will have. We use a cough assist machine to help expand Deb lungs and it
also vacuums out the lungs. This is like a type of therapy to keep the
muscles from around the lungs from getting any weaker. Time is the most
important thing and atrophy is the worst thing.
November 18, 2006
Jerrall-
Last night Debbie was a wake twice when I changed her depends. Stats
were up and down all night. I did not give Debbie any extra oxygen but did
do two breathing treatments. Amber worked with Debbie today about 8 am
on so I could get some sleep.
To night Debbie had a shower and right to sleep. Deb has not been on the
last few days her meds are set for comfort until Deb finishes 5 day of
Prednisone.
Today took 3 breathing treatments.
Amber-
Mom was jumpy at times only when her throat was bothering her. But we
did do the ball again to sit on and got on the standing frame for 25
minuets. Great job mom.
November 17, 2006
Jerrall-
Last night Debbie slept until 7 am but still had extra suction needed. This
morning when I awoke to a bubbling sound and checked Deb’s mouth and it
was ¼ full of saliva. Every breath she took the exhale would make this
sound. I suctioned out all of the debris and did a breathing treatment and
every thing was ok. Debbie was wide awake but calm. Every morning we
are going to do a breathing treatment before Deb gets up. All night Deb’s
oxygen level did not drop which is great. Still Debbie will have to get over
this suction work for me to be able to sleep with both ears closed.
Debbie has had a good day with Amber while I got some much needed
sleep. Last night when Debbie and I were resting on the mat I went a sleep
again. Last night Deb got to sleep by 1 am which is great.
Amber-
Mom and I had an awesome day. It was like old times. She lifted her foot
both time to put it on the step block when we got ready to do sitting balance
on the mat. We got to do sitting balance on the ball for the first time in
forever. Yeah.. Mom did really good at everything we did.
November 16, 2006
Jerrall-
Debbie had a good night we did not start to be bed until 1 am because
when Deb went to sleep I do not want any surprises. At 10 pm I started
working with Debbie’s mouth, with ice, with a tooth brush and two breathing
treatments. When I was finished, Debbie’s mouth and lungs were empty of
all debris. The lung will continue to produce secretions but maybe this will
help or buy time. At 2 am I gave Deb one more treatment. While I slept for
a couple of hours I could still hear Amber suction Debbie a couple of times.
When I was with Debbie she did pretty well only 200 cc of secretions all
night. Debbie stats were 97% and pulse mid 70’s. Debbie held her potty all
night which is getting better.
I let Debbie sleep in until 9 am she needed it after yesterday. Debbie is
taking Prednisone for the next five days per the Lung doctor. Orders and
up to 8 breathing treatments a day. Every one is telling me this med will
increase heart rate and Debbie will be mad all the time. Monday I am too
take Debbie back to the hospital for new Lung X-Rays and meet with the
Lung Doctor too she what to do next. They also want to see how fast
Debbie’s lung are detraining. Hopefully they will tell me which is more
important comfort or rehab. Having a TBI may not be what is the most
important thing in Debbie’s life and hopefully give me some idea of how
much time left.
As of 2 pm Debbie has only coughed twice on her own and needed suction
3 times. Debbie has been calm all morning no tremors in her right leg and
hand and only a little in her tongue. Debbie’s stats have been 98 to 99 %
own her own. Debbie’s pulse has been in the mid to upper 80’s which is
great. Brain PT canceled today he was sick and did not want to get Deb
sick. So to day will be a day to just relax.
Debbie and I laid down on the mat her head resting on my arm and both of
us on are left side. We looked out the 5’x5’ picture window beside the mat
like we do several times a day for one and a half hours. Deb was so calm
and stats stayed the same.
At three thirty pm we got up to watch What I Like About You one of Deb’s
favorite shows. Debbie started getting vary up set so I checked her mouth
and every thing was ok. So after 10 minutes I brought Debbie back to the
den and lay her down on the mat and connected the pulse/ox. At the same
time Deb needed her depends changed. It must have happened when I
picked her up for the transfer. But pain or some reason Deb’s pulse went
up in the higher 90’s for about a half hour and Deb’s oxygen jumped from
94 to 96 several times which was the first all day. Then when Debbie finally
calmed down stats went back to normal 98% and mid 80’s pulse. Still the
right side has tremors worse than before. It is 5 pm now so Deb can eat
soon and get some needed meds. At least Deb’s oxygen level is not
dropping today but I have had to clean Deb’s mouth three times, got 400cc
of secretions which are mostly clear and have done one breathing
treatment extra.
It is 7 pm now and Debbie has eaten and had meds, all though I gave 10
mg of propranolol extra because of the tremors not the blood pressure. At
6 pm I got Debbie dressed for the second time today. Debbie is in her chair
and watching Reba her ox level is jumping from 94 to97%. Deb’s pulse has
been in the high 90’s and the tremors are unbelievable. I gave Debbie
extra med and unhooked her monitor because with the tremors so bad I can
not trust the readings. Every thing will be ok as long as I set here and hold
on to her until the shaking stops. Now at 8:30 pm the propranolol has
lowered Deb’s pulse to 80 and only slight tremor in right hand and mouth
only.
November 14, 2006
Amber-
Today was a tough day for mom, the trip to the ER was not a fun trip. Mom
is home now and we have learned so much. Time goes to fast that is for
sure. I know dad will write about today soon. Hard to right these feelings
down right now. Glad to hold you tonight mom while dad took a shower.
November 13, 2006
Jerrall-
I do not know where to start this could be Debbie’s last days on earth. Last
night at 3 am Deb woke me up with that rattle noise. Her pulse ox was on 94
instead of 98 – 100 with no extra help. Debbie was past out cold, right eye
was not light responsive and like a pin point even with light in it. Her body
was cold all over which is always warm. I put heavy socks on her and took
off all braces and her limbs were plastid any way. I took a ½ hour and
cleaned Deb’s mouth and removed all form type debris it was light gray. I
filled a 900cc canister. This has only been done once when we took Debbie
to the hospital last time, but the color is better and stats are better. I put
oxygen on Deb at 2 liter flow of oxygen and stats came up to 97% and pulse
to 58 which Debbie is never below70. And one hour later Debbie was
warmer. I gave Debbie a breathing treatment, oxygen came up to 97 % on
2 liter flow, pulse came up to 66 and Debbie is getting warmer.
I have done two hard hours alone of work on Debbie as fast as I can and
cleaning out her lungs and now lets just wait and see. I gave Debbie
another breathing treatment again and it seam to help.
I watched Debbie until 5:30 am and stats on there own were 98% and
66pulse and body was warmer again. It worked this time, tomorrow I need
to make some calls.
To night it was over a canister and a half of light gray secretions the most
yet. This has been the third night of two oxygen treatments, dropped stats
and oral suction needed.
To night while I make these notes Amber fed Deb and suctioned ¾
canisters of chunkier secretions. No extra oxygen needed.
Today also speech said she had done as much with Debbie as she could
so I guess no more speech what can I say. (Just give me time)
Amber I hope you know we can not do this with you.
I wanted to say welcome back to Susanne OT and wish these were happier
times. You have made the biggest impact on this family yet and could not
have been a better friend. Thanks from my heart.
November 12, 2006
Jerrall-
Debbie went to sleep at 1:00 am lying in my arms on the den mat like Deb
did a few mornings ago at 5:30 am. Both time extra meds made no
difference with getting Deb to go to sleep. The brain injury has peaked and
what healing is possible has begun. Debbie’s left eye has two stitches in it
and is doing great and even has some vision at an angle but because
Debbie can not move her left side the stitches will have to stay for now.
Debbie is relearning how to breathe and shallow but the breaths are not
deep enough to exchange air in the lower part of her lungs so we are trying
to do this for Debbie with a cough assist machine. This at least inflates Deb’
s lung as much as possible and then vacuums them out. This sleep issue
the last week is taking its toll on Debbie and me. Every time I get in a
horizontal position I go asleep. The problem appears to be pain, pinched
nerve, or some thing to do with Debbie’s pelvis which had many fractures in
the accident or her crushed rib cage. Debbie’s set after the accident was
only 4” wide. None of this was important to any one but me when Debbie
was in a coma just keeping her alive came first. Now Debbie is more a
where of her body and surroundings brings up more issues. Debbie potty
in my arms last night before she went to sleep. I got her to bed and back to
sleep by 1 am. At 2:30 am I had to clear her air way with suction and then
at 4:30 am Debbie was a wake and her heart rate was96 instead of the70s
or 80s. This tells me pain. So I took off all of her braces are rolled Debbie
over and got in her bed with her. With in 30 minutes Debbie went potty and
then the heart rate dropped I got Deb put back together and now it is 10 am
and Debbie is still a sleep. The only way to get her to potty is to position
her on her left hip. I wonder with Doctor wants to hear this story or will even
do any thing about it. What another night, Debbie and Krystal are still a
sleep may be I can get my laundry folded before they both wake up.
Wrong 10:05 Debbie is a wake and our day begins. Every Sunday we start
in the kitchen with breakfast and med. Then an extra good face wash and
pads. Then oral care that takes an hour because of swallowing breaks. It is
a 2-3 hour process but we have all the time in the world. That is Debbie’s
best medicine time. We have sat on the coach in the den and in the living
room in Deb’s chair and watched a movie RV. I was able to give Deb a right
arm complete out stretch the whole time. Even though we have seen this
movie many times we are trying to make some new memories. I still laugh
out loud several times but Debbie doesn’t. I have been told with a sever
brain injury emotions are the hardest to relearn. That doesn’t stop me from
trying.
It is 5 pm and Krystal has left on her way back to school and Debbie is
resting on the mat while I am making a few notes then I hear that rattle and
check Debbie. She needs suction to clear a mucus plug so she can
breathe. Why should she have to go thru all of this? It is hard to be a part
of all of this and doing a good job makes it more comfortable on Debbie but
at the same time prolongs this journey?
I have been working on 40 years of pictures to keep all of the old memories
a live but Krystal saw some of them when she was young and broke down
crying. This is the first emotion I have seen in Krystal. I wonder if this is
such a good idea. I hope these pictures do not make Debbie sad but how
would I know.
Just now while I was changing Deb’s depends I said that yellow shirt looks
great on you and Debbie gave me the biggest smile so some emotion is
working.
It is 7 pm and we are watching 50 first dates and Deb is watching it like it is
the first time. Deb sitting here tonight with you I realize we are now making
new memories and if you can not read what we do each day there is no
reason some one else, may be Dee can read them to you every day to
build new memories from. To night while we are watching this movie 50 first
dates I am setting in my chair and you are setting in your chair under your
blanket all warm and every thing I have my hand on the arm rest and you
are rubbing on my fingers. I do not know if you remember my hand or just
checking out every line on my fingers. It feels like you remember and are
trying to communicate to me. People have told me you act different when I
am in the room. That you act like you feel safe when I am around. I am
trying to take of myself so we can be together once again. Keep trying I
know how strong you are together we can get though this. I love you and
will wake as long as it takes. When you wake up I am always on your right
side you are never a lone.
November 11, 2006
Jerrall-
This web site is for Debbie’s recovery but today was the hardest for me yet.
I went with a friend of the family back to our old subdivision to help Amber
out for about six hours. I was across the street from the man that saved
Debbie’s life and held Deb’s neck through the window until the fire
department cut the door off. All of the sounds, smells and old memories hit
me all at once and I could not get away from them. This was a small group
of about 1000 families and it is fall and everyone was outside or taking a
walk on the blacktop paths just like Debbie did every day. It has been 43
months since Debbie last spoke to me and said have a good day just one
more week before our trip. I do not even if one told her I loved her I just got
in my truck and drove off. I can not explain these feelings but it was like
Debbie had been dead all of this time. I have two lives Krystal was 9 years
old when we move here and Amber was away in college. And know this life
where I can not remember what day it is, Krystal is away in college and
Debbie and I live with Amber. How could I lose these 4 years?
When I got home at 6 pm and saw Debbie I was so glad those were just old
memories and we have this second chance at life most people do not get.
Amber and Krystal did the best thing moving Debbie and myself to near
downtown Charlotte. I have noticed for some time now there is always some
one with me, Debbie, Amber or Krystal. I even agreed for a CNA to help
during the day but I still do all the transfers and meds. Dee even reads to
Debbie and I can take a brake but not for long. A lot of the time we all work
together on therapy. I will admit Dee has made a difference in Debbie’s and
my life. Enough of me I am making this adjustment ok but it may take a life
time.
NOW FOR SOME GREAT NEWS!!! Debbie got her LiteGate last week and
it even has a treadmill. Debbie can not walk but she is starting to press her
toes on the treadmill and you have to start some where. If Debbie ever
walks again or not this machine will help with balance and so many other
things. Also Debbie has tracts in the den, bathroom, and bedroom for her
portable ceiling lift system. I decided to go with Voyager because of a much
needed gift from Ms. Love. Thank you once again you would know what a
difference it makes in Debbie’s life.
Most of all Dr. Hammond told me one in a million people Ambien wakes up
instead of put to sleep. So guess what Debbie is one in a million. Debbie
was given Ambien for a sleep aid but it works in reverse. The problem is
getting the dose amount and time right. All so it is temporary and only last
2 to 8 hours depending on so many factors. So far all three therapists have
seen the difference but I need more data to talk to Dr. Hammond.
And better than that Debbie has not needed oxygen since we have been
home from the hospital over 3 mouths ago. It is 1:30 am and Deb is a sleep
but I heard a rattle just now and had to do oral suction to clear mucus plug.
Deb always wears a pulse/oxy monitors but I try to prevent a problem before
the alarm goes off.
Debbie sleep pattern seams to be better at least only one or two night of no
sleep at all and that is when Deb does her best therapy. As long as Deb
and I are together in this new life there is some thing new coming out to
help Debbie’s recovery or we have to invent things.
November 10, 2006
Jerrall-
Is it possible to have two nights so much like each other? Again we got
Debbie to bed and everything appeared OK and I went to sleep setting up
at the edge of Debbie’s bed while Amber finished Deb’s breathing
treatment. An hour later I asked are we finished yet and no one answered
back and all the lights were off. I must have been a sleep for an hour or
more so I went on to bed the right way next to Debbie and at 2 pm I was a
woken by her jumping same time as last night. An hour later I got Deb back
together and she would not go back to sleep. This time we had a whole
meal and meds and I lay down with Debbie in her bed. After an hour and
still not a sleep and her food digested I though may be the den mat might
be better so I could roll Debbie on her side and wrap my legs around her so
she would feel safe, Sure enough it worked and we both went to sleep.
Debbie may have got a total of 4 hours tonight. If thing continues there
may be a hip or pain problem that is new.
Now it is 1:30 pm in the afternoon and the kids are gone and Debbie and
myself are setting outside enjoying this warm weather like nothing
happened. Every day is a new day and I always look forward to what is a
head as long as we are together.
Amber-
Well mom slept till 1 pm today. She was wore out. We got to hold hands
and lay down beside each other, best part of my day.
November 9, 2006
Jerrall-
Amber let me sleep all day yesterday I must have looked bad. Last night
Debbie had a shower and off to bed by midnight every thing appeared
normal so I went to sleep in my little bed and soon after Amber felt safe to
go to bed. After only an hour and a half I checked Debbie and she was
mad as a hornet. Next I checked her pants and they were soaking wet. If I
could have caught it earlier may be Deb would not have waked up. When
some thing like this happens Debbie can not talk or let me know something
is wrong. I always try to keep one hand on her at all times but when I went
to sleep Amber had rolled my bed to far a way for Debbie. I must be crazy
that Amber can roll me around and not wake me up.
So I got Deb back together and as soon as she turned on her back Debbie
went to the bathroom again. Deb has taught me a lot of things but the most
important this is patients. So another hour later Deb is clean in her braces
and ready for a good nights sleep. Debbie’s stats look great. Still after a ½
hour Deb can not go to sleep so I get some formula and extra meds. Now
Deb does not want to get up it is 3:30 am but wants me to lay in her bed
with her. OK anything to make this night get over. Finally at 5am Debbie
goes to sleep and I try to get in my bed but Deb starts moving around. I do
not worry about any braces instead I lie in my bed and keep one of my leg
on hers and my right on her right elbow. This works until 8:30 am. At least
the sun is up and we can start are day. This morning Debbie is not sleepy
and wants to help do every thing. So 8:30 am to 12:30 pm is how long it
took to get dressed, wash her face and teeth and finally eat Breakfast.
Then I lay Debbie on her mat and Dee comes. I take a break to follow up
on Debbie’s medical call and they work together like best friends. Debbie
needs a break from me sticking things in her mouth and always telling her
what to do.
I would say Debbie got 3 hours sleep last night in all but her vital signs
stayed the same. This is what I would call a Nero thing.
Brain PT came at 2 pm and we worked on the new LiteGate machine. This
time with Debbie being so alert Deb actually held her right on the treadmill
instead of pulling it up in the air like last time. Debbie was up a good 20
minutes. You could tell Debbie did not under stand what she was doing on
a treadmill but with time who knows. Dee kept a close eye on Debbie’s face
while Brian and I worked on Deb’s feet. Next time the left side will have to
be adjusted better as not to press on Deb’s neck. Debbie had a great
session.
Tonight at 4 pm Debbie got to eat on the screen porch and watch the sun
set. Today has been a great day just a little late with everything. Tonight
when we came in I fixed Debbie up lay on the mat, turned on the outside
flood lights, turned off all the lights in the house and we laid there for two
hours looking out the window at what regular people take for granted. This
was a great time for gravity to a lot of needed stretching to several
muscles. With this 2.5 mg of Ambien in the morning the tremors are almost
all gone during the day. At7:30 pm I made a special set on the couch so
Debbie could watch a little TV like old times. Every thing was great except I
needed to support Deb’s head with my left hand. But to have Debbie out of
that chair I would be glad to stand on my head.
Loneliness: Two hour of silence is forever. It gives you time to think to
much but tonight I was thinking what could I do to keep Debbie from this
soundless prison. Debbie can hear just fine but Deb can not listen to me all
the time. When Dee came today and said hey to Debbie I saw Debbie
reach out and hold her hand and the look on Debbie’s face was like a child
at Christmas. When Brian came the same reaction happened. Today is
the first time I thought like I was in Debbie’s shoes. I can not imagine what it
is like to lay in bed and not know what has happened to me. Or go thru the
day in a wheelchair and not understand why. I know Debbie better than any
one that is why I feel so guilty any time we can not be together. I feel as
connected to Debbie as we are one. So far most of my guesses have
worked out. The next time I feel lonely I need to step back and realize
Krystal, Amber and myself all have these feeling and what can we do to
help Deb get though the day? There are two sides to every coin! I do not
even want to write about love or sickness and in health.
November 8, 2006
Amber-
Mom only had 1 wild time with me today. Otherwise we had fun. 2 times in
the sit to stand transfer I let mom stand on her own and she did. The
second time was the strongest I have ever felt her. She was holder her leg
straight and keeping herself up. We did sitting balance 2 times and she
was solid she was not jumping and she had good control. She did the
standing frame for 15 minutes, she wanted to pick her right leg up so we
came down. She also had a dry throat bothering her. She communicated
with me today a bit and otherwise expressed what she wanted. Thanks for
a good day mom.
November 7, 2006
Jerrall-
Debbie had another good nights sleep and got up at 7am. Twice Deb went
# 1 but the second time at 5:30 am I woke Deb up and she never really
went back to sleep. I got in bed with her and we did a lot of gravity
stretches. This morning I gave another 2.5 mg Ambien and everything is
great. It has stopped all the tremors and Debbie can control her right arm
movements.
It is 1:45pm and I am out on the screen porch having a cup of coffee, typing
and watch the leaves fall. Debbie’s new friend Dee she is a CAN that has
been helping for the last couple weeks told me to find something to and
take a brake for a while. Dee is a God sent. Dee with no one asking started
reading Debbie’s books to her. Debbie will set as calm and they both seam
to get some thing out of it. Debbie loves to read and all the books have the
corners turned down just like the way Debbie left them the day before the
accident. This is some of the most powerful meds I have ever seen. Debbie
and Dee have a connection which I have never seen. Dee always talk one
on one with everyone even Debbie. Also Dee talks to Debbie about what is
important to Debbie. When I am in the room and no one knows I see Deb
trying to communicate with Dee in her own way. After what I have seen
today the therapist need to include Dee as much as possible. I wonder
what it would that to get Dee more hours a day but when you’re special at
what you do you are always over booked.
Brain (PT) came today and because of time we got Deb up on the ball to
work on balance. Deb did a great job but since she has been home for 3
months from the hospital Deb got tired in 15 minutes instead of 30. I
wonder how long it will take to get her strength back. Brain said today was a
good session. I can tell the Ambien helps missing wire connect.
When everyone is finally gone, Debbie wants to get up in her chair and
watch a TV show I can tell Deb needs some time alone. I have to watch
Deb but with out her knowing it.
Deb laid down and rested and went #1. About a ½ hour Deb was up again
answering questions with a nod. It is 7 pm and only slight tremors in right
hand and tongue.
It is 8 pm and Debbie is in her chair and when I went to suction her mouth
she held my hand and helped me. This is a bad thing that Debbie is
depending on suction instead of swallowing on her own. Or a year from now
some things work and some things don’t. Either way best friends forever !
November 06, 2006
Amber-
Today was a roller coaster. Mom was wild at times and then calm. Her
throat bothered her off and on. We did the standing frame for 15 minutes
before mom got rowdy. She was attentive a few times and she was so on.
We did have fun regardless.
Jerrall
Debbie went to bed around 12:30 am and slept until 9 am with no extra
meds even Trazadona. Debbie had a shower tonight and it seam to put her
to sleep. Amber gave Deb 2.5 mg Ambien this morning and Amber said
Debbie was wild all day.
November 5, 2006
Jerrall-
Debbie had another great nights sleep from 1 am to 9:30 am. Debbie held
her potty all night which was great also her stats were great. When we got
up and Deb was calm and we went to the kitchen to eat and regular meds
except 5mg of Ambien. Today has been a calm and at peace day. Every
day Deb takes Ambien the tremors are controllable and Debbie appears
more with us trying to talk and making movements with no tone. This is so
strange the way Ambien works with Debbie. Deb does get tired faster but
she seams to be with us more. Krystal stayed last night and tonight and we
move the pool table out of the den to give Debbie more room. We got the
table stuck ¾ the way to the living room and need help to finish.
To night Deb, Krystal and I set on the couch and watched TV. The tremors
have come back to Debbie’s mouth and tongue. Today has been a long
day and I can tell Debbie is getting tired. May be no bath tonight. Also
tonight we are not taking trazadone to go to sleep. The most common side
effect is hand tremors and I need to know its affect on Deb. Trazadone is
not a sleeping pill it is a antidepressant. When Deb wants to sleep she
does and when she does not want too no meds will work. Today has been
one of the best days in a long time. Thank you who ever is responsible.
Debbie has had a lot of rest today and no over stimulation. It took a while
but now I look forward to weekends. Well it is 10 pm and time to do oral
care and go to bed.
November 4, 2006
Jerrall-
Debbie had a great night last night. After her shower we got to bed around
11:30 pm but Debbie did not go to sleep until 2 am. During the night
Debbie’s oxygen level stayed stable. The heart alarm went off once but
with a shake every thing was ok. I have the alarm set at 60 beats per
minute. I did give Deb an extra breathing treatment. At 1:00 am and 5:30
am I changed Deb’s depends with out waking her up. Amber was up at 8:30
am this morning and I asked if she would watch and I would lie down in her
bed to get some real sleep and Amber said ok. I sleep from 8:30 am until
11:00 am and it felt like 8 hours. The only problem was Amber went back to
sleep in my bed and at 11 am Debbie had not had her 6 am meds or food. I
said things I shouldn’t have said. To me a care giver is some one who put
the patient first even if you can not use the bathroom your self or you eat
last. This is not reality but how I have lived for the last 42 months.
This all could not work with out Amber, she takes care of all med and
formula and oxygen orders and supplies, also all appointments and therapy
schedules. Being part of the case management team is a full time job.
Then Amber takes classes Tuesday and Thursday until 8 pm. Also Amber
takes every weekend to try to have a private life. Amber needs a break to
be able to help Debbie the most. I know nothing about computers Amber
and Krystal have that job also. It sounds like I do nothing but it is my job to
keep Debbie alive. This is the hardest thing I have every had to do.
Doctors will always over sedate or make the patient comfortable. But that
does not mean recovery. A many of day I have had to just hold on to
Debbie while she jumps and shakes like with drug withdrawal. It is getting
better but to keep Debbie breathing on her own is a full time job. Also
Debbie does not sleep a lot of nights. Staying ahead of the medical and
insurance people is also a full time job. Some thing is going to have to give
because sleep depravation is a reality. Amber and I also work for free just
to keep Debbie at home and we could never make enough money to buy
what Debbie need. Money is not every thing but you can not live with out
it. But money can not buy health. Debbie is a full time job for 4 or 5 people
and with time and love Debbie may see maximum recovery possible. Only
god knows tomorrow and the best thing any one can do for Debbie is keep
Deb in your prays.
After getting Debbie thru this morning meds, oral care and changing
depends and it is in the 50’s we took Debbie out. We went to Krystal’s dorm
and hung some curtains. Amber and Debbie lay in the truck while Krystal
and I worked.
November 3, 2006
Jerrall-
Last night started at 2 am for both of us. This was one of those nights
where Debbie would not sleep no matter how much meds I could of gave
her. But this would suppress Debbie’s pulmonary system. The first thing I
heard was Deb cough and I new this would be a lone night. Debbie was
wide a wake, 94% oxygen level which is low for Debs normal. Heart rate
was 82 which was high but ok. I checked Deb’s depends and changed
them and then I noticed Deb’s bed sheet was a ray even Debbie has limited
ability to move. I did not want to get Deb out of bed or wake Amber up so
with 20 rolls finally I got the bed made. By now it is 3:30 am and Debbie still
needs suction and is still at 92-94%. This calls for a breathing treatment of
about 20 minutes. Which help stats but not the sleep issue. I got Debbie .
25 mg of klonopin and 5mg propranolol and laid down with her in her bed.
This worked for a while but as the alarm would go off I would have to get up
and go to the other side of the bed to do oral suction work. Needless to say
no body got any sleep. Last night I got a total of 900cc of secretions from
Debbie and it was light gray not brown which is great. It is 10:30am I am
giving Debbie to Amber and I have to get some sleep in case tonight is a
repeat. What is hard to understand is that Debbie does not get tired or
take naps. Debbie I love and am here for you always and will continue to
fight on your behalf until you can speak for your self.
I lay down at 11 am and got up at 3 pm and still can not see thru my eye but
that is beside the point. Amber and Debbie were laying on the mat and Deb
needed to go # 1. The three of us tried to use the potty chair even giving
Deb 150 cc of water while on the potty chair twice. After ½ of an hour of
coaching, needing Deb’s bladder and any thing else we could think of and
still no luck. Before Deb potties she starts shaking bad as if in pain. The
first year Deb used the potty chair and since then laying on her side and
positioning is all that works. Beside TBI Deb had multiple fractures to her
pelvis. We got Deb dressed and watched Krumps Christmas the movie.
Deb went potty in her chair at some point of time and she became so calm.
Got Deb changed and let her rest for a while. Because of a rattle we got
Deb back up in the chair and used the cough assist machine. We cleaned
Deb’s mouth and it was time to eat and meds.
At 7:30pm Debbie is so calm and watching TV and so I need to work on Deb’
s mouth soon. The last 3 weeks I have been giving Deb 2 breathing
treatments during the night. Last night was the first time since Debbie has
been home from the hospital she has had an oxygen drop. I pray Deb is
not getting sick again.
All I want for Christmas is that Debbie is still with use and not be sick or in
the hospital.
Tonight Amber and I moved Debbie’s bed and cleaned everything with a
wet wash cloth, sweeper (all hardwood floors) and then swifter ½ of all the
floors and all of hall and Deb’s room. There is no dust any where.
Amber changed oxygen supplier and to night I hooked every thing up at the
head of Debbie’s bed. Now she has oxygen outlet, compressed air outlet
and a hook up the hospital us for an oxygen humidified air mask or collar. I
was hoping to never have to hook all of this up but that was a dream.
Thanks Amber for all the hard work.
Well it is time for a shower and to use the bathroom then get to bed. I
cleaned Deb’s mouth just before the shower so hopefully this will help Deb
get through the night.
Amber-
Mom and I had a good day. We got to lay down and hold onto each other
for 20 minutes, we enjoyed that. She did good with sit to stand transfers.
We all tried the potty chair 2 times, no luck, but we tried. We got to watch a
movie at home together, I enjoyed that.
November 2, 2006
Jerrall-
Debbie slept well last night and we were up by 7:30 am. Deb only needed
her depends changes once at 2:30 am and I did not even wake Deb up. It
took from 7:30 until 9:30 am to get Deb ready for the day. OT came at 10
am and the tremors were so bad in her right all they could work on was
setting balance. I told OT this is how Debbie is every morning and that she
needed to see Deb at any time of day to better understand Deb better.
After the session I let Debbie lay on the mat for an hour and just rest. At 11
am Deb and I used the tilt by ourselves. Debbie was up for an hour until
Deb started jumping or shaking. When I let Deb down I checked for and
pressure points any where. Every thing went great. The longer Deb was
up the calmer Deb became. As time went by I could she Deb relax her
ankles. I hope we can find time to stand more often this is something I can
do a lone.
Debbie relaxed for a ½ hour on the mat while I got her lunch. Then Deb got
up and I gave her the meds and Dee said let her finish feeding Debbie so I
could get some lunch for my self. This was a first that’s Dee. About an
hour later it was time to get ready for PT. I laid Debbie down on the mat
and got Deb’s harness on her. The only problem was PT was 20 minutes
late and this harness is not something you want to be in for to long. Then
PT said he only wanted to use the LiteGait every other visit so I took the
harness off and they worked on setting balance. PT has no experience with
the LiteGait. All of this today makes me want to read Debbie’s discharge
papers again. These papers have never meant anything to me because no
one knows the future. But I know I need people around Debbie that are
thinking about recovery not maintenance. One thing I do not know is how
much time we have against atrophy and organ failure.
Debbie’s discharge papers say she will go to a nursing home and never be
able to take care of her self. When Deb was discharged from rehab I was
told it would be a slow long recovery. As of today Debbie is total, care
some time Deb will wipe her mouth when needed. Debbie is getting better
but at breathing, swallowing and just what it takes to survive. Still at night
Debbie needs oral suction to keep her air way clear. Debbie is like a stroke
on her left side. At the hospital I had to keep reminding them when we
would pull Deb up in her bed her left side is like a broken neck. Debbie’s
wheelchair is a part of Deb’s new body. Out of the chair Debbie can not
move parts of her body. That is why I never leave Deb a lone, as long as I
am with her I will carry her or adjust any time needed.
With all this going on, Debbie and I are still one, best friends forever.
November 1, 2006
Jerrall-
I hope to start out this month with the right attitude. Just when I think I can
control these feelings another issue comes up or for no reason at all I get
great flashbacks of the last 40 years, and it makes it so hard to even get
out of bed. I do not want to complain, Debbie and the girls and I have had a
great life over the years.
Until you are in shoes it is hard to explain these feelings. Some days it is
hard to get out of bed. But then you have to Debbie is all that is keeping me
going. Sadness and loneliness will probably always come and go. But
each day is getting easier. TIME is a huge word, and love and time are
Debbie’s most powerful meds that there are!
Over the last two weeks I have been doing test with Ambien. I lost my
hadrive and all of my notes. Then Amber lost her hadrive. Finally 11/1/06
we are back able to keeping up with all the updates once a gain.
Amber-
We met with our regular eye doctor today and she said that mom’s right eye
looks good and mom’s left eye looks better. She said mom’s surgeon did a
great job and left some of the eye open. She said they do not usually do
that, so that means mom can see, she can see out of the opening in her left
eye. Mom is asleep tonight at midnight she must have had a big day. I also
learned I will be attending a class on the 21st to learn about a shot I will give
mom everyday for 18 months that will rebuild her bones. I hate giving her
shots. I feel so mean. Why do I always have to be the bad guy?
Good job mom, small steps but change is occurring. Step back and you will
see. It is hard most of the time to see change when you are so close, you
forget to step back and look. 3.5 years ago we used to come home and
look on a wall to see what mom was doing different. How many times did
she breath over the ventilator that day or if had high pressure in her head,
when did she move first, or how many seconds she did something. Wow
looking at it that way mom, you are a champ and how far you have come,
how far we all have come. Each of us have learned so much about each
other and ourselves. We really are all we have, but at least we are worth
having. Time goes by to fast and life seems to be all work and nothing
slows down. I remember when I could go without sleep and work mom
hard. Now I seem so slow and tired I am confused sometimes, I will figure it
our. At least I am not sick all the time like I used to be or have attacks.