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Jerrall-
Debbie had a good night she slept 6 hours and held her potty until 6 am.
I got Debbie up before 7 am and we went to the kitchen and did oral care.
Debbie’s mouth did not take more than 10 minutes. Bernice must have
keep Deb’s mouth moist all night.
At 9 am we went to the living room to watch Regis and some thing
happened after that. Debbie held her head down for 3 hour as if she did
not want to be here or go any where. Debbie’s oxygen level kept jumping
around from 88 to 94 %. We did an extra breathing treatment and extra
meds but still Debbie was up set about something. With the truck running
getting warm for Deb instead of going to infusion we went back to Debbie
bed where all the equipment is to lay on Deb’s side and try to drain any
extra salvia. By noon I called Amber to come help me get Debbie’s to
infusion. Amber held on to Debbie while I drove. After we got to infusion
and Deb had her meds she was better but still not right.
When we got home I held on to Debbie while Amber fed her and gave
meds. Then it was time for OT, Amber helped with Debbie and I lay down
for a while. It takes a lot out of me to deal with Debbie some times. Amber
said Debbie had a good rest of the day. When I got up I went out for an
hour and when I got back Debbie was going crazy again and Amber was
glad to leave. It took me 2 hours to get Debbie back to normal.
The rest of the night was ok as long as I stayed close but when I went to
the restroom Deb would start coughing or choking these are the only
sounds Deb can make.
I got Debbie to bed at 11 pm just before Bernice got here Amber not here
tonight so getting Debbie positioned was a lot harder. As long as I stayed
with Debbie she was calm and around 1 am Deb went to sleep and then I
left it with Bernice and I went to bed in the living room.
Amber-
Mom did good with OT even though she needed to go to the bathroom.
She did 6 rounds on her own with the hand bike. She then did a set of 3
and another set of 3. She took breaks. Yeah
February 27, 2007
Jerrall-
Debbie only slept 1 ½ to 2 hours last night. I was so tired I did not even
hear the alarms going off. Bernice was in Debbie’s bedroom at her desk
and had to experience a 20 minute issue where all you can do and the o2
stats were below 90 %. Bernice told me this morning even with a 5 liter
flow of oxygen and an extra breathing treatment it was all she could. If the
spell lasted any longer she would have to call 911. A brain injury can be
ok and then turn around 360 degrees and be different. Each morning
Debbie wakes up it is a miracle.
This morning we did not have to hurry I did oral care, a facial and got
Debbie dressed in a new outfit I got her last week. Debbie has two doctor
appointments today and she looks so good I had to shave and put on my
dress pants and a silk shirt to be able to fit in.
At 11 am we got to infusion and got the IV meds, only two more days to
go. The staff and nurses there make you feel right at home.
Then at 1 pm Debbie had to be at Ortho for hip and pelvis x-rays. Every
thing that could go wrong did. First off none of the staff had ever seen
any one like Debbie and was really making nerves. Then they took us to
are room and said to get their shorts on and left Debbie and my self
alone. All of that is ok but when I picked Debbie up to lay on the table
which was a 10 inch lift Debbie went potty every where thru her depends
and pants and onto the table. By now I am really sweating but I got Deb
together in record time and then back in her wheel chair. When the nurse
came back in we were ready to go to x-ray. Now she wants Debbie on
another table and told me not to step on any of the buttons on the floor.
Great this was no problem but when Debbie laid down her right leg came
up. Then the nurse told me to hold Deb’s hands up and her right leg
down at the same time. I do not know how but we got 2 pictures the first
try. Now Debbie has to get back in her chair and back to our room.
The doctor came in and put the x-rays up on the wall in a light box. He
was a down to earth man and showed me the old injury and how it had
heeled. There was not bone spur, arthritis and the placement look great.
So all of the pain or issue connected with Debbie’s right leg was due to
the brain injury and the muscles that were affected
and needs to be treated with meds. Now these words are from a regular
doctor not a rehab doctor. So now it is an extra high lift and get Deb
dressed in dry cloths and back in her chair. No worries at least we know
what it is not.
I think we got home about 3:30 pm and Debbie was ready for the big wide
mat while I got her lunch together. Today Debbie will miss one meal
because there are not enough hours in a day.
Amber helped me to give Debbie a shower tonight and Deb seamed to
really enjoy the spa time. At 11 pm I went to bed and Amber worked with
the nurse until Deb went to sleep.
February 26, 2007
Jerrall-
Debbie had a great night with 5 hours of straight sleep. Also Debbie only
used the bathroom once during the night and then again when Deb got
up. This is a more normal pattern. When nursing first started 5 week ago
and Debbie was only going potty every two hours I knew some thing was
wrong but no one would listen. I got Debbie all stretched out in bed
before she got up. Note: the left had a lot more tone than usually good or
bad it is some thing new. Between getting dressed and all of the tone
broke up it is 9 am. We went straight to the kitchen eye care, mouth care,
short bath under arms and face and getting all the bags in the truck. We
left on time and we were not late to infusion, this is a first.
I always keep Debbie’s bags packed so we could leave in a moment
noticed.
Med bag- all medical records on cd’s, a daily eating and med chart and all
the supplies including trash bags. This bag was made for a bowling ball
but it has just the right size pockets and Debbie could live for 2days with
all the supplies.
The portable suction pump, rinse water, tooth brush and all oral care
supplies.
Portable pulse/oxygen sensor.
Oxygen bottle size depends how long we are going to be gone.
The nebulizer bag for breathing treatments.
Several size pillows and covers.
February 25, 2007
Jerrall-
No time to cook breakfast for Krystal instead Debbie has to be at infusion
at 11 am. Today went fast and was a rest day for Debbie.
February 24, 2007
Jerrall-
This morning Debbie was at up 8 am and did not potty all night long. It
has been a long time since that has happened. Debbie got a good 7
hours sleep. We went right into the kitchen and started with oral care,
dressing and getting ready for the daily trip to infusion. For once we were
on time and ready. Debbie had a few more tremors than yesterday, I
guess because we were rushing her so much this morning. During the
infusion, Debbie kept rubbing her for head.
At 12:39 pm we got back home, I took a nap while the girls put Debbie on
the standing frame. Still for just 15 minutes instead of 45 minutes July 06.
They spent 2.5 hours doing girl things, resting and some therapy. I got up
at 3 pm and started oral care right out. Then I started stretching Deb’s
legs and pelvis and put on the harness for the Lite gate. Debbie did some
balance ball and rolling on command. Debbie can make it really rock. For
now, just re-learning some leg control is a huge job. In the harness, we
went potty and it took a while to clean up.
A little TV with Debbie super on and back to the mat again. I asked
Krystal to let us know when it was 10:30 pm so we could go to the bath
room and then off to bed. But in a short time both of us were asleep and
Deb was in my arms. Debbie must have felt safe.
GREAT NIGHT
February 23, 2007
Jerrall-
This morning started early for every one. Debbie had a Dr Appointment
at 8:30 am. Amber had to go to work and some of her personal business.
Debbie was a great sport with vary few tremors and even the doc noticed
and on top of that Debbie has not had any food or meds since midnight
last night. Primary care referred Debbie to ortho for Tuesday of next
week to find out where the pain is coming from and if anything can be
done to help.
So primary care hip, pelvis and potty trouble
Rehab doc infections and out patient therapy
Pulmonary Deb’s sleep apnea
These are the issues that are in the works for next week. On March 19
Debbie has to do Intake or evaluation for out patent therapy.
The bottom line is for the next 3 weeks I will have two make decisions that
will affect Debbie life for ever.
After such a big day Debbie was so tired she went to sleep in her
wheelchair at 10:30 pm. Krystal was home for the weekend and helped
me to get Debbie to bed.
Debbie seams to be getting better with the IV meds. Every thing is
becoming more normal and that is the best signal. To night nursing did
not show up or even call so there is another issue to have to deal with
tomorrow.
“Make every moment count”
February 22, 2007
Jerrall-
According to my chart the nurse fills out for me Debbie only slept every
other hour, may be 3 hours only. Today has been long but a great day in
the life of a brain injury. At 6:30 am I got in bed with Deb and showed the
nurse how it works and she did not disagree. Debbie and I laid there for
two hours and when we got up Debbie was like butter. We went right to
the kitchen and did oral care and a quick bath and change of shirts. I saw
the real Debbie so I gave Deb extra meds which made the day great. We
were only ½ hour late for infusion but at least Debbie was calm.
When we finished at infusion we went and parked at the mall by the house
and Deb got to eat and have meds. We just set there for almost an hour
while Deb’s lunch settled and I talked about every thing. I may drive Deb
nuts talking so much. Then we went into the mall I got some food and
Debbie and I sat outside by the water fountain while I ate. This was the
first day it has been warm enough to enjoy outside. Then we walked the
mall for 3 hours and Debbie was appeared to be enjoying it. We went to
Dick’s sporting goods and got Debbie 2 shirts for therapy, a 2 lb. weight to
help with her right hand. Also I got a 9 dollar massager unit hopefully it
will stimulate the nerves. Today I tested Debbie several times and Debbie
understood and was with me even if she could not control all of her
muscles. About 3:30 pm we got home and Debbie lay on the mat perfectly
calm for over an hour. About 4 pm Deb went potty on the mat and we got
up to eat and watch a movie. It is 8 pm and we are watching another
movie but Debbie is holding my left hand, pinching and jerking her right
leg. It is so strange the way drugs work in a brain injury and every brain
injury is different.
Tomorrow we have to be at the doctors at 8:30 am. This is a primary care
visit and lab work. Then infusion and then at our house meet the case
manager and at 2 pm a PT, OT session. In one more hour I will have to
make a discussion on how Debbie needs to be drugged for to night and
still be on tomorrow. Also to night is shower night.
Debbie only slept for an hour and awake for an hour all night long last
night. If Deb was lucky only 3 hours total. To night Debbie was asleep by
11:30 pm. Tomorrow is a complex day for Debbie. At 8:30 am a annual
primary care appointment, 11 am infusion to get her IV meds, back home
to meet the case manager at 1 pm and OT and PT double session at
2pm. Also we still need the x-ray on Debbie’s pelvis and hip.
February 21, 2007
Jerrall-
Tonight I want to start with a request. Please keep Amber Michelle Rich in
your prayers and if you have a church or pray network. Pass this on
because only prayer will help us in this need. God said he would never
put more on use than we could bear and I know this to be true. Amber
has not been able to eat or sleep because of the dreams for about 3
months. Amber lost her Mom and she knows recovery is possible, but it
will be a different Mom. Amber wants to complete college and get a good
job. Also Amber wants to have a family of her own. Amber has a great
man in her life that helps Amber to put the pieces together. Amber wants
to be with Debbie as much as possible. I cannot get through to her one
step at a time. This is something she will work out in time and is between
her, Debbie, and God. I can tell she is at her breaking point and needs
guidance that comes only from above. Amber has been with Debbie
almost 4 years and they have been great years. But with 4/4/07 coming
up, I hope she is not loosening her faith. With all Amber has done for
Debbie, she should never have any regrets. Debbie would want her to
start her own family. If any one thinks they can help send Amber an E-
Mail. I am a dad and trying to be a mom, but it is still not the same.
February 20, 2007
Jerrall-
Debbie only slept 3 hours last night and I got up at 6 am and set with her.
By 5:30 am I saw Deb was not going to go back to sleep so I got Deb
dressed and up in her wheelchair to start the day early. Even with this
extra I was still late by 30 minutes to the infusion center to get Debbie’s
daily dose of antibiotics, this will make 5 times and only 9 to go. This is a
lot of trouble but better than having to be in the hospital for 2 week.
Debbie’s seams to be feeling better but some time the tremors are worse
just before she has to potty. With this pic line in Debbie’s right arm she
wants to hold her arm up and close to her chest. Functional use of the
only arm Debbie can control is a big problem for therapy. OT will be here
at 4 pm I pray Debbie will be ready for therapy but what ever is best for
Debbie and I can not worry about every thing. People will just have to
accept Debbie for who she is.
I got a call yesterday from rehab and they want to make an appointment
for a PT, OT and Speech evaluation. Because of the pic line I asked if we
come make it around March 19 and they agreed. It is 2 pm and I am just
letting Debbie rest until OT comes.
By 4 pm when OT got here Debbie was having a lot of tremors and the
only thing they could work on was setting balance. Debbie did ok but got
tired fast in 20 minutes. After OT left Debbie got worst with the tremors.
Even at 6 pm with extra meds there was no change in the tremors. Finally
at 8 pm Debbie went potty and the tremors got better.
At 9:30 pm we are off to use the restroom and early to bed. I do not know
about Debbie but I could sleep for two days. Tomorrow we have to go to
infusion and do a bone density scan. The forecast is for rain that will
make it fun.
February 19, 2007
Jerrall-
This morning Debbie had to go to infusion by 11 am so our morning went
fast. It was so good to just get out of the house. Debbie had PT when we
got home it was ok but Debbie’s gets so week so fast.
This afternoon Amber worked with Debbie while I got a couple of hours
sleep. When I got up Debbie was going crazy and with extra meds the
rest of the night was ok.
To night is shower night and I stayed with Deb until she went to sleep
around 1:30 am. Deb’s air way did great to night and was calm at bed
time.
Amber- At infusion the reality was to much
Amber-
Mom did good with PT, even though she was jumpy. She put her right
hand out onto Bryan’s arm 3 times. She left it for about 3 seconds. Her
balance was good for about 15 or so minutes. She did good. She got
restless or tired. She did a good transfer to the chair with him after this.
He had a hard time keep mom’s right foot on the ground. Once she stood
up on it and pushed weight down her foot stayed on the floor. The last sit
to stand they did she pulled down hard. For the record mom did great
sitting balance. We had fun for a bit then she needed to potty she got
wild and even more after she pottied. Glad to be with you mom, though.
February 18, 2007
Jerrall-
Debbie had a normal night she only went potty three times and was able
to sleep six hours. The nurse said Deb only had one time of apnea. After
four years of no sleep I still can not sleep more than 3 hours even with
meds. I try to not be in the nurses was after I get Debbie to sleep but I
had to check on Deb though the night. I have nothing that gives me
pleasure any more, I don’t get hungry or tired any more and I am trying
but I can feel my time with Debbie is limited. With Deb’s decline of
function, the breathing treatments and sometimes the need for oxygen.
Also with all of these unexplained infections. I had been told off the book
they know what is going on but no one has to tell me when I see Debbie
24/7 at her worst and her best I know some thing is not right. I just want to
be with Deb as much as possible everyone can tell the good effect it has
on Debbie. That could be why Debbie has been fighting so hard the last
four years. With these IV treatments Debbie has started to turn her head
and lip word to me again.
Debbie has had a long day in her wheelchair going and getting IV therapy,
then to the grocery store. Krystal took Deb and I out today and she made
sure I have food in the house for next weak. It is a little after 5 pm and
Debbie is resting on the mat and Krystal is loading up her car to go back
to the dorm tonight. So I thought I would catch up on my notes. Debbie is
covered in three blankets and on a wedge looking at the rear patio. Just
enjoying the time machine and not moving a muscle. This day has gone
so fast since I ad to take Debbie out of the house Who knows want to
night will being we just take a step at a time.
All of Debbie’s stats have been great to day and she has been extra calm
with out extra meds. Tomorrow I will have to make another appointment
for the x-ray appointment we missed last Friday because of getting the
pick line.
February 17, 2007
Jerrall-
Last night on the way to bed we asked Debbie to turn the light off on our
way to bed. Instead Debbie used her right toe instead. With this new
picline Debbie will not use her right hand just hold it close to her chest. I
still was surprised Debbie understood what needed to happen. Last night
according to the chart Debbie only slept 1:30 am until 5:30 am 4 hours
only. But still it was a good night. The nurse let at 7 am and Deb and I
did 2 hours of stretching.
At 11 am we had to be at the ER to get Debbie’s second IV treatment. It
was to be in and out but Debbie had a heart rate of 121 and a temperate
off 99.7 so we had to stay for several hours to have every thing checked
out. This was good but inspected.
We got to leave at 4 pm and there was no time to get Debbie’s x-rays
taken. Tomorrow will be another day. This pic line is still causing a lot of
issues with her right arm. The meds must be working Debbie was more
with use today than the last few weeks.
Today Krystal was home from college and spent some quality time with
Debbie. Tonight Krystal took Debbie and me to the mall just to get Debbie
out of the house and Debbie seemed to enjoy herself. Krystal has been
working on Deb’s face for two week since one of the nurses wanted to
help and put some cream on Debbie’s face that she was allergic too. Deb’
s face has been peeling for two weeks. Well it is 10:40 pm and time for
bed and the nurse to come so I will clean Debbie’s mouth and then to bed.
“Make every moment count”
February 16, 2007
Jerrall-
Last night Debbie had Bernice for a nurse and she was great but Debbie
had a lot of secretions. I could hear the suction machine most of the
night. Three times when I got up Bernice was really working on Debbie’s
mouth. Today we were supposed to get an x-ray of Debbie’s hip. Instead
we got a call from the rehab doctor Debbie had Klebsiella pneumoniae
infection in her urine and we have to start IV treatments today. This must
be a big deal for so much action to happen in 1, 2 of a day. We went to
an infusion place first and Debbie’s veins would not last 14 day. So off to
the ER to have another pic line installed. At the ER Debbie got her first
dose of antibiotics. Tomorrow and the next 14 days we will go for an hour
to get the IV meds. This could be the reason for loss of function. Today
with the pic line Debbie has been extra calm.
Both girls are home tonight and the nurse will be here at 11 pm so tonight
should not be too bad. Tomorrow if we can get the IV treatment and the x-
rays of Debbie’s hip/pelvis will be a full day.
“Make every moment count”
February 15, 2007
Jerrall-
This morning after the nurse left Debbie was still a sleep so I turned out
the lights and Debbie did not wake up until 10 am. Last night Debbie had
apnea for 60 seconds and o2 stats did not drop but the heart rate
dropped by 4 to 58 before the nurse could get Debbie alert. Today PT
Brain came for a session and Debbie was pulling her right leg up and it
was hard to do therapy. As soon as brain left Debbie was calm with her
arm rest off and her right foot out straight in another chair and watching a
TV show.
It is now 6:30 pm and Debbie is finally calm after a whole day of tight
muscles and jumping. All so Debbie has not gone potty all day and the
second day of Flomax. I also notice Flomax makes Debbie sleep longer.
Now at 9 pm Debbie is going crazy again my hand is almost blue and this
is after together we have lain on the mat I call the time machine looking
out the picture window at the patio with all the Christmas lights on. I check
Debbie’s bottom and tonight we will go to the bathroom before bedtime
and Amber just came to help with a shower. Still it does not make Debbie
jumping any better for me. Tonight we will use the bathroom and take a
shower and then to bed. By then the nurse should be here for night time
meds. Amber and I can do every thing like we have done for the last 4
years but with respect to nursing we wait until bed time with nursing so as
much as possible can be in the record.
The first two years was the worst with breathing and Nero storms and I did
that time a lone, no therapy or nursing. At 4 years it is better but every
morning we still are lucky Debbie is still with us. Debbie has had a lot of
good times the last 4 years even though she can not talk and eats only
though a peg tube. Debbie knows she is with family and never a lone.
The rehab or coma doctor last week said Deb was doing great it just takes
time even 10 years. I have all the time in the world but when Debbie is
with us Deb may not change appearance but after 4 years what little hair I
have left it is turning gray but that is ok Deb knows me by my touch. Love
is the most important thing in Deb’s med bag.
Debbie is getting better every day but also weaker and it is a race to get
Debbie using more of her muscles. Debbie has her own private rehab
house with even a LiteGate, Tilt table and standing frame. Buttons,
switches and computer aids. The problem is I have only two hands but
the patents of Job. Still is that enough. I think of only one step at a time
to keep from going crazy. I respect every one and anger to no one still
every day is a battle. Every one around us said I am in over my head but
no one knows how to help. Things are better now but that just means 2
years ago every one would say I was crazy. At first two of Deb’s friends
came to visit and Deb was still asleep (coma) and I picked Deb up and put
her in there lap and said Debbie just needs touched and she needs to
now she is not alone. May be one day Deb will tell me about this time out.
It is 10 pm and with extra meds Debbie is starting to calm down, we are
trying to finish the movie Titanic from last night. Almost shower time and
to see what tomorrow brings.
“Make every moment count”
February 14, 2007
Jerrall-
It is had to say a lot about the nights but from my charts that the nurses fill
out Debbie had a great night. I always stay with Debbie until she is a
sleep which is around 1 to 3 am. Last night Debbie had a great night with
about 4.5 hours sleep and then when I checked about 5 am Debbie’s
nurse Ellen was reading one of Debbie’s books to her and Debbie was
extra alert. I just looked in and did not want to disturb them.
Ellen is a special nurse, she is great at her job, understands touch and
energy healing just like Debbie believes. Last night before Ellen came
Debbie was going crazy and it was all I could do to hold Debbie down in
her bed. Then Ellen came in just at the right time, I was getting so tired
Debbie had wore me out for hours. Ellen took off her coat told Amber
what meds to get and Ellen started working with Debbie’s arm and hand
and in a low voice talked to Debbie. It did not take 5 minutes to calm
Debbie down even with out meds. I just kept working on Debbie’s right
side; arm and leg while Debbie was in her bed and we are suppose to be
going to sleep. Thanks Ellen I will never give up but I get tired faster now
and you will never know the great impact you have had on Debbie’s
recovery. Debbie has such a bond with you and there are a lot of people
Debbie will not even talk to.
This morning when the nurse left Debbie was dressed in red for
Valentines Day and up in her chair but starting to get tired. I worked in
the kitchen, with Reiki music on and Debbie with me. Debbie went back to
sleep tilted back in her special chair. The last three days have been the
first time for me to cook in years. The nurses have made a Hugh
difference in Debbie’s life.
Amber worked with Debbie this morning with her own PT, OT and Speech
sessions and E –Stem work. I got some sleep for 3 hours getting ready
for tonight alone with Debbie and a new nurse. When I got Debbie she
was jumping and going crazy. Also Debbie had a breathing issue.
We went to the kitchen and started oral care and one hour later Debbie
was doing great with her o2 stats. Then we spent the rest of the day to
just having fun. About 6:30 pm Debbie started going wild again. It will just
take time to find what is wrong. Hopefully sooner than later. We went to
the bedroom and did a breathing treatment and Debbie was able to go
#1. Debbie’s pulse was still almost a 100 but we go up any way.
About 8pm we watched a DVD Titanic. We took off the right arm rest and
Debbie put her right leg in my lap and the jumping stopped. The nurse
came an hour early so we did not get to finish the movie.
If Debbie can not get the same nurses it is to hard to keep retraining
people. Last night the nurse woke me two times so finally I just stayed
up. It is not that had for me to be alone with Debbie.
“Make every moment count”
February 12, 2007
Jerrall-
Today everything went great for and with Debbie. This time I had no
plans or went out of the way to change anything with the way Debbie
would act, no extra meds or any thing. We actually got to the appointment
10 minutes late. Since this was not a planed appointment we were there
an extra long time and did not get home until almost 8 pm. When Debbie
saw the first doctor she was calm only a small tremor in her tongue. We
went over every thing and he made note and I just spoke from my heart
with no notes. I said want I was going to do what was needed and not
what any one else had to say, as a guardian in Deb’s best interest.
All the Doctors agreed and rehab wants to help with every thing instead of
primary care getting a lot of extra doctors involved. Dr. Hammond is said
to be one the best coma and rehab Doctors in the south east. Over four
years we are on the same page with Debbie’s recovery.
The most important news today is that Debbie is way beyond a minimal
conscience state. With a lot of time and hard work Debbie will have more
recovery than at this point that I could ever realize. Baby steps only and
there will be a lot of rocks in the path and also some set backs to over
come. I can work any time but with so much to do in Debbie’s recovery
and Amber gone there is not even enough time to eat, shower or have
any time for myself. I would not trade this time with Debbie for any thing.
The nurses are always on me about sleep but I am just trying to help
make Debbie’s time go faster, safer and I tell her several times a day she
will never be a lone. Together we will get though this and Debbie is finally
starting to express yes every day I tell her.
At rehab today the nurse got a urine sample to make sure every thing is
ok. Also they told me to give Debbie 8 oz of cranberry juice every day.
This will make an acidic environment in Debbie’s system so infections can
not grow. It is funny after four years I am just now being told about this
which could prevent problems of the past. It may take 2 weeks to hear
back on the tests. Also the first thing we are going to try to stop the pain
when Debbie uses the bathroom is a med called Flomax, This will help
with spasms in Deb’s bladder. This is one of the main causes of Debbie’s
tremors.
The next thing is on Friday Debbie has to have her hip and pelvis x-rayed
so we can find out where the pain is coming from. This has only been an
issue for about 2 months since Debbie is more a where of her
surroundings. But this is one of the main causes of Debbie’s tremors.
Thursday week we will start decreasing Debbie’s baclofen pump. This has
always been a choice but atrophy is the main issue now. No one has all
the answers I am just glade the team will be working on a lot of issues at
one time.
After the night nurses get more details I will needs to check on a sleep
study to see how to handle Debbie’s sleep apnea.
Debbie will continue with therapy at home until we get the baclofen set
right and then transfer to out patent therapy. All of this will keep my mind
off of some other things that have had me down for a while. With all of
this team work the recovery looks to have a better out come. Last week I
felt so alone and not knowing what to do first with Debbie’s, we were in a
rut and going backwards. I all so know we will be opening a can of worms
with all of these tests.
“Make ever moment count”
February 11, 2007
Jerrall-
Tomorrow is the big day. We go see Debbie’s coma doctor. I appreciate
all the emails and information. It has been very helpful and the new ideas
have made a difference in the way I am looking at things.
February 8, 2007
Jerrall-
Today was so important to me for Debbie to have a good PT session.
Every thing today was planed and timed out. I did not even do any
therapy with Debbie not wanting to make Debbie tired.
The day started out great Debbie was able to sleep in until 9:30 am.
Then Debbie was at 96% oxygen level when I had got her dressed and
put her in her wheelchair. This is 1% lower each day for the last 3 days.
So first thing we went to the kitchen and spent one hour in the kitchen
doing oral care and Debbie’s oxygen was 100% when we were finished.
No need for extra meds or breathing treatment or oxygen.
At 11 am I let Debbie rest until noon and lunch. At lunch I even let Debbie
lie back in her special chair and watch TV. At 1 pm I let Debbie rest on
the mat and got Deb’s shoes on.
Then it happened Debbie could not breathe because the muscle spasms
were so bad and Debbie could not control her right side hand or foot. I
gave Debbie a breathing treatment, massaged all of Debbie’s muscles
and anything I could think of. Debbie’s pulse was over105 and her
oxygen level was 88%. What else could go wrong? Just as PT came in
the back door Debbie pottied on the mat and in her cloths. Now I know all
of this was brought on by Debbie pelvis potty problem. This goes on
every day and several times a day for a while now. And now PT had to
walk in and witness all of this. I got Debbie together vary fast and Brain
was able to do setting balance on the mat for 40 minutes. After Debbie
potties every thing is ok. Then after therapy Brain and I were setting on
the mat and Debbie was in her wheelchair with her right leg in Brian’s lap
while he massaged it. I told Brian this meeting Monday was about Debbie’
s quality of life and the way things are now are not working for any one. I
think Brian got the whole picture now and only Dr. Hammond can make a
difference in Debbie’s life now nursing, therapy, meds and Debbie’s family
life.
“Make every moment count”
As I finished my notes and after Brain left Debbie watched a movie 4 pm to
5:30 pm. I looked at Debbie and she had passed out in her chair I got her
to answer me if she was ok and she nodded no and I asked if she needed
to go to her bedroom and she whispered yes and was more alert.
5:30 pm first time Debbie ever had to go to bed during the day. Debbie
was losing consciences and I wanted to call 911 but there was no time she
need oxygen right now Debbie was below 88% and her blood pressure
was 145/87 and pulse in the low 60’s. I got her to bed, covered up her
skin was so cold, wired up equipment the best I could thank god I had a
clip on oxygen sensor. It seam like I was giving Deb a 5 liter flow at first to
get her ox level up and then change to 2 liter flow and a breathing
treatment and at the same time suction throat and using a tooth brush to
remove coughed up debris. Also getting a blood pressure on left wrist
with cuff.
By 5:40 pm I had Deb at room air 98% oxygen level, 72 pulse, pressure at
136/82 after treatment. Debbie was extra alert in her right eye and
tremors were getting worse even with her right leg brace on. Debbie was
getting warmer and I was able to stay calm and what could 911 do if
Debbie had a good oxygen level but I wonder about the low pulse and
high blood pressure.
By 6 pm Debbie’s saliva drainage was starting to dry up and I wanted to
feed Debbie and give extra propranolol for the high pressure but no
Ativan with low pulse.
By 6:30 pm Debbie was at 98% room air and 84 pulse and 144/85. Still
bad tremors and mouth was dry. Debbie is still in her air bed.
By 6:45 pm Debbie’s right leg finally stop jerking with me holding knee and
toes. Right hand and pectal muscle still jerking.
7 pm Debbie went potty double the usual amount and then every thing
was more like normal.
At 7:30 pm I got Debbie up in her wheelchair, 136/84, pulse 82 and 99%
room air. But right side tremors still worse than usual.
Is this strange Debbie only potty 2 times and both times were in the lying
position.
“Make every moment count “
February 7, 2007
Jerrall-
Yesterday days post is a few things than need to be talked about at a
special meeting we have arranged this coming Monday 2/12/07. I did not
mean to scare anyone it is just you are told only what you ask nothing
more or nothing less. Debbie and I have been together 40 years and
really since Debbie can not talk for herself so I have to for both. It is like
that saying you jump I jump. There would be no life for me if any thing
happened to Debbie. Another saying I heard “Make Every Moment
Count” and that is how I try to live my life.
Debbie had a good day yesterday just after PT left I knelled down at her
wheelchair and said I love you and to my surprise Deb lipped the same
back to me and blow me a kiss. Then I rubbed her forehead and said in
time everything is going to be all right and Deb closed her eye and
nodded her head yes several times. It has been over two weeks since
Deb has tried to talk to me.
February 6, 2007
Jerrall-
IS DEBBIE AT THE POINT OF NO RETURN
Dr. Hammond I have finished talking to everyone on Debbie’s recovery
team and you being the leader we all need your help and advice.
Case Manager Jessica Loften 704-907-6040
Pulminalogist Dr. Spangenthal 704-342-8143
Both base line and other lung x-rays look stable. Mucus plugs and
drainage are the issue.
Extensive sinus disease is present most likely from intubation on
Radiological report 4/12/03
Nero Surgeon Dr. Mc Lanahan 704-376-1605
Baclofen pump
Hemroyds Dr. Zbinden 704-541-3134
Bone Density and Mammogram Charlotte Radiology 1-877-362-2232
Eye Surgery Dr. Alter 704-295-3000
Gastric Peg Tube Dr. Cyzner 704-543-
7305
PT Bryan Moone 704-512-2300
Right leg calf muscle always firing. Justify inconsistency.
OT Sussanne 704-512-2300
Meds Right arm tremor Justify inconsistency. Left arm
getting better
Bayada Nursing Heather Kuzara RN 704-549-1700
Meds not sleeping tremors Blood pressure increases at night
Apnea frequent potty
Mucus plugs left arm too tight at night right leg knee immobilizer at all
times PRN
Med Emporium Oxygen supplies 704-535-2201
American Home Patient Promote tube food 704-529-0643
Eckerd 4215 Providence Rd 704-366-3899
Dr. Hammond I called you in Dec.2006 and let you know Debbie was being
discharged from speech because of mental decline. Your nurse said it
could be in the brain or in the meds. The CT-Scan came back no change
from last year Dec. 2005 even with the atrophy of the cerebellum
brainstem.
Dec. 11, 2006 you changed Debbie’s meds and now it has been 2 months
and still no change. In another month Debbie will not have any therapy.
What do we need to do to help Debbie?
Aug. 2006 when Debbie was inpatient and making so many improvements
and then came home and the therapist said Debbie was doing thing they
never saw her do before and Debbie was even lipping words. Two weeks
after being home the home health nurse took a urine sample to the lab
and Debbie had a Klebsiella pneumoniae infection in her urine. This is
the time the home therapist had the best two weeks in a year. It took
another week to find out what antibiotic that would work. Once I had the
pick line put in Debbie’s right arm at the hospital all of the troubles
started. After 3 weeks of IV treatment at home Debbie was retested and
no sign of the infection was present and Debbie did not have any colony
or even hosts. But since then Debbie has had worse tremors in the right
arm and trouble extending the arm out. I am not sure you are aware of
this issue.
At rehab in aug. Debbie could turn the hand bike 120 times and now 10
times if she is lucky.
I am not a doctor just a husband Debbie will never the same and if this is
the pattern after 4 years it is my job to know how to make what is left of
Debbie’s as easy as possible. If therapy is needed then we need to adjust
meds and if therapy is not needed then the meds need to be adjusted in a
different way. Dr. Hammond I am only trying to be honest with my self and
make Debbie as comfortable as possible. There is 4 years of history now
so this should help planning care.
Also a lot of Debbie’s tremors are her way of expressing pain. Two hours
before Debbie has to potty the tremors get worse and for Debbie to be
able to potty I have to turn Deb on her left side lying down for Deb to
potty. This is an issue I want to follow up with primary care in two weeks.
Also the last month I have had to remove Debbie’s right arm rest and hold
Deb’s right leg to the side to stop the pain in Deb’s pelvis.
When I give Debbie Ambien she has no tremors for 5 hours and Deb is
able to turn her neck but when Deb comes down she has worse tremors
that make it had to use Ambien. The therapist like Debbie on Ambien but
do not see 4 hours later. Debbie never goes to sleep on Ambien.
Debbie has taken benzodiazepine drugs for 4 years that Ativan takes a
way the tremors but only last 2 hours. At bed time if Debbie takes 1mg
Ativan it helps her sleep but what is the side effects. The other night
Debbie stayed up for 2 days and the nurse gave Debbie 2 and ½ Ativan
and did not make a difference. This is just information I do not know to do
with.
I need advice on Debbie’s sleep, tremors and cognition.
If Debbie is in a minimally conscious state doesn’t she need stronger
stimulants or other meds.
February 4, 2007
Jerrall-
This is the worst morning I can remember. I stayed up to long last night
waiting on Debbie to go to sleep. This morning Debbie was down in her
bed. Her shirt waded up under her back and her left leg positioner half on
with her foot strapped to the other end.
Debbie was stiff as could be this morning will never happen again. From
there it took me a ½ day to get Debbie back in order. Debbie was mostly
calm all day with extra meds. Today it was had to find some thing for
Debbie do. Gerald and Helen came over to see Debbie but Debbie did
not say anything. To night Amber watched a movie with Debbie while I
catch up on my notes. To night is shower night may be this will make a
better night or Ambers home any thing will better than last night..
February 3, 2007
Jerrall-
Well it is Saturday again where did the week go. Debbie slept 4 hours last
night and Ellen was Debbie’s nurse to night. Debbie really likes Ellen.
This morning Debbie woke up at 4:30 am so instead of Debbie just laying
in bed Ellen gave Debbie a full body work out. When I got Debbie up at 6:
30 am she was like butter. Ellen left at 7 am and Debbie and I had a good
morning. About 11 am Amber got up and gave me a break so I could get
a couple of hours sleep while they did therapy and Krystal helped Amber
do the standing frame. Debbie is still only doing 15 minutes instead of 30
minutes like before Deb was sick in July.
This afternoon Amber went to her friends and Krystal, Debbie and I went
shopping. Debbie was really on and enjoyed being out of the house we
did not get home until 6:30 pm. Debbie held her potty all day which is
great. After Debbie got some rest, she spent the night with Krystal. At
one point Debbie’s oxygen level was down to 92% and blood pressure
160/93 which is not normal. When we got back home I had my little chair
between Deb and Kris and I turned to Kris to ask a question and Debbie
reached out and grabbed my arm and pulled me back around. This is a
first and scared me to death. I almost jumped over Krystal. With an hour
of oral care and an extra breathing treatment Deb came back to 98%.
After the movie and the rest room the nurse was here and time for bed.
She said why don’t I go to bed (do you need to ask) and I said when
Debbie is a sleep I will go to bed. Love came up once but she didn’t
understand you could tell.
Good day Bad ending!
February 2, 2007
Jerrall-
Debbie slept well last night and this is Bernice’s last night. Debbie and I
had a great morning and when Amber got up I got a couple of hour’s
sleep where they did therapy. Lucky I got up and OT Susanne was still
here and we had a good talk. This was the renal for Debbie’s therapy and
we needed to talk. Dec. 11 meds were changed with no change in Debbie
and the CT-Scan came back ok. Debbie will probably lose all her therapy
in 9 weeks if some thing does not change. We do not see the doctor until
April and this will not work. I made a call today and good a new
appointment for 2 weeks Feb. 12. There are some answers to be
answered and we may not want to hear to answer but it has to be to make
progress. BIG step one.
Debbie and I had a great afternoon while Amber had a lot of earns to run.
I can be with Debbie but there is so many other things that have to be
done it take Amber several hours a week and there is no way I would have
the time.
Long day and the first day to a journey I don’t want to go!
February 1, 2007
Jerrall-
I wonder what this month will being. We have 2“of snow on the ground
and freezing for this afternoon. If we lose power we will have to take
Debbie some where else. Also with ice on the road Bernice the nurse will
not be able to help tonight. I called Amber at her boy friends and asked if
she could come over before dark and the roads freeze over and help me
with Debbie and get me some food. Amber could have said no or not
answered her phone but because of her love for her mom she is going to
help us out. It is 4 pm and Amber just got here I hope we can have a talk
tonight to figure out our options with Debbie.
Debbie slept in again today but woke tight on all of her limbs and sever
tremors on her right side. When the nurse left this morning I took my
sleeping bag and lay in the floor by Debbie’s bed until she woke up.
There were a couple of times I heard her rattle so I had to suction. If you
are not right with Debbie by the time the alarms goes off Debbie will have
lose more brain cells or even choked to death.
This morning after we got up we spent 3 hours with oral care and a facial.
Then we lay on the mat and watched the snow but still I can not get
Debbie to stop the tremors. Right now it is 4:10 pm and Debbie is in her
chair kicking her right foot trying to tell me some thing. But all I can think
of is Amber working with Debbie and I need to get some sleep so I can be
there for Debbie to night.
A 2 hour nap makes me ready for another day in the same day if that
makes any since. Living 2 days at a time makes you gray fast. My whole
life now revolves around Debbie’s recovery.
It is 9 pm and we have know idea if the roads are too icy for Bernice to get
here. Amber changed her life to come home to night to help with a
shower, bring some much needed food and help with Debbie to night.
Tomorrow will be another day and Amber can go any where she wants but
tonight her mom came first. It is time for a shower and Debbie loves this
part of her day and Amber and I never get in a hurry, Debbie has tough
us that.
