09/2002 Blog

Author: carolarmstrong
Date Updates on Carol for SEPTEMBER
09.01.2002

I spent all day with Carol. She did not do good today. She
seemed very tired, even after taking a nap she was falling asleep at dinner.
She seemed to just fall asleep in the middle of doing something then wake
back up after a few minutes. I talked with her nurse and she said they can
check her medication and see if there is anything that could be causing
it. I know from the past that She is sensitive to pain medicine.

09.02.2002

Carol was doing better today. She had one session of therapy
this morning. I peeked in to see what she was doing. They were working
on her left peripheral vision and holding her neck and back straight.
The boys were able to visit with her when she finished. She talked to
them and asked them if they were being good and doing good in school.
She also told them she loved and missed them. Carol’s sister-in-law took
the boys out for lunch for a while and I went with Carol to eat. She ate
pretty good. I ended up feeding her because I did not want her to put
too much in her mouth and make herself gag. She tends to do that if someone
does not keep reminding her to swallow first. She had a piece of cake
from her nephew’s birthday. After lunch I took her with me to the Piedmont
hospital snack bar so I could eat. There is a tunnel that connects Shepherd
with Piedmont. When we got back she was put in bed so she could take a
nap. After a few hours the boys came back and we said our goodbye’s. Carol
reminded them to be good and gave them hugs and kisses. I called Carol
about 8pm while I was driving home. She was just about to go to sleep.
She told me to be careful and not drive too fast. I told her I would see
her Saturday. Here are some of the pictures I took today:

09.03.2002

I just got a call from Carol’s caseworker at Shepherd.
It looks like she is still not doing good. She told me she is still very
sleepy and not able to participate. She also had to cancel the Neuro-Opthamologist
appointment that was scheduled for 9/9. She said that she would need to
be able to answer a lot of questions during the exam. The doctors are
going to try to increase the medication for neuro-stimulation. The are
also going to schedule another CT scan to be done sometime in the next
few days.

09.04.2002

Carol went down for a CT scan today. We are still waiting
for the results. She was shaking more lastnight and had problems remembering
people and where she was.

We are still waiting on the CT results. Her case manager did say they
removed the patch (medicine) they had her on for dizziness to see if that
would help. She was still lethargic this morning.

The CT scan showed the left ventrical was a little larger than normal.
They are going to send the CT scans over to a neurologist at the Piedmont
hospital for another look. They did not seem to think it was a problem.
When Carol was back at MUSC they saw the same thing so a perminent shunt
was put in her head to drain off the extra fluid. It might be that the
shunt needs to be adjusted.

The doctor from Piedmont was in surgery all day so he won’t be able to
look at the scans until tomorrow morning. Carol was doing a little better
tonight, but still very sleepy.

09.05.2002

Not much change. They think the CT scans look pretty normal
compared to the last set. Her therapy basically has been limited to range
of motion work. She eats in her room now instead of being with the rest
of the group. We are asking the doctors to stop all medication except
the one neuro stimulant and the blood thinner. We want to see if any of
the other medications could be causing the sleepiness. It could be that
she does not react well with Ritalin. She is almost on the strongest dose
that could be given.

09.06.2002

I talked with Carol’s doctor this morning. They are pretty
sure the CT scans look as normal as they can be in Carol’s condition.
They just finished drawing some spinal fluid for testing to see if she
has an infection. She does have a urinary track infection and is being
treated for that now. That can cause a person with her condition to be
a little weaker. After talking for awhile with the doctor about her medication
and what he wanted to try he decided to stop all medications for the weekend
and see how she is doing Monday. He talked about increasing the Ritalin
dosage and starting another neuro-stimulant also. I will be going to see
Carol tomorrow.

I was able to get to the hospital in time to visit for a few hours. She
was wet from sweat and confused. She thought I was her brother-in-law
James. It lasted for about 20 minutes then she remembered who I was. She
was fine for the rest of the night. She was doing better today. She stayed
awake all day. They stopped all her medications today to see what happens
over the weekend.

09.07.2002

Carol is doing good today. She was in cog group when I
got there (after breakfast). Then she went to OT. After that I took her
outside for about an hour then brought her back to her room to get some
rest before lunch. She was completely wet this morning. She is still having
cold sweats and lots of nerveous energy. She is having a hard time resting.

She slept for about two hours then we went to dinner. I brought her a
piece of chocolate truffle raspberry cheesecake for desert. She really
liked it. After dinner we watched a movie called ‘Kate and Leopold’. She
really liked it. It was 9:30 before she got in bed. She was really tired
by then. She had been sweating again. Her nurse was concerned so she took
her temperature. It was normal. About 20 minutes later, the tech came
in and took her temperature and it was 101. It only lasted for about 30
minutes then it was back to normal. She went right to sleep.

Carol’s family was able to meet with Carol’s doctor at Shepherd Friday
night. He explained alot to them and went over the scans and x-rays. They
really liked him and said that he was willing to answer any questions
they had. On a side note, Carol’s sister said she asked the doctor what
his oppinion would be if he was given the CT scans to look at and asked
what he thought the condition of the patient was. He said his first response
would be dead, and the second one would be in a coma. He said she was
a miracle and he personally had never seen someone with so much brain
mass removal (almost the whole right side) live.

09.08.2002

I got to the hospital about 9:10. Carol was sitting outfront
by the nurses station. She had finished her breakfast and was awake. I
took her outside for almost an hour.

Carol ate a good lunch then went down for a nap. She slept for about
two hours. We had a lot of visitors come while she was asleep se we just
sat around and talked until she woke up. When she woke up she was talking
really well (she normally whispers). She talked to everyone for a while
then we had to get her ready to eat dinner. I left while she was eating
but got an update while I was one the road. She took another short nap
after dinner then woke up just before 9pm. I talked to her on the phone
and she sounded really good.

09.09.2002

I called the nurse to check on Carol about 10am. She said
she was awake and doing good. She was still sweating a little. I talked
to the doctor and he had been by to see Carol. He was happy with her progress
over the weekend and said that he thinks they should keep her off of all
medications except the antibiotics, blood thinner, and anti-inflammatory.
He had not seen the sweating yet but did not seem concerned. We talked
more about having the bone put back in her skull there. The surgeon that
will be doing it will contact MUSC and talk with the doctor that was assigned
to Carol.

8pm, Carol was having a good day. Her family took her all around the
hospital after dinner. They took a stroll to the tunnel that connects
Shepherd with the Piedmont hospital, went to the garden outside, looked
at the fishtank, and typed me an email. Carol told her sister what to
type and Carol clicked the Send button. This is what she had to write:

James,

It was a beautiful day. I want to have lunch.
James, Hurry up and get back from South Carolina. Keep
you head up. We don’t want any hero’s. Hey baby.
When are you coming home? I’ll see you in the morning
and I’ll give you a big one. Tell Jaime not to follow
in his cousin’s footsteps. Tell Alexander to keep
playing but not to hard. I think about you all the
time. I love you.

Lots of Love,
Carol

09.10.2002

Carol had a good day. She ate well at dinner. She got to
go outside for a while. On the way out she stopped in the rec room and
looked at the fish tank. She said she likes to watch the fish. It looks
like they may have her scheduled to be released around the 2nd of October.

09.11.2002

Today is Carol’s three month anniversary for being in the
hospital. The accident occurred on June 10th and she was found and sent
to MUSC on June 11th.

I’m not sure how Carol did today yet. She did not want to eat because she was tired so she went down for a nap about 6pm. She woke up about 8pm and I was able to talk to her briefly. She was talking very softly. We are hope she just had a busy day and was tired because of that. She also had a 3-D CT scan done today. We think that was done to get ready to put the bone back on her skull.

09.12.2002

I talked with Carol’s case manager at Shepherd this morning.
She is supposed to review Carol’s information then give me a call back
(she just took over Carol’s case). I asked her to find out how Carol did
yesterday because she was tired last night. Carol’s sister-in-law talked
with the OT (who talked with the PT) and filled her in on Carol’s progress.
She said she was progressing slowly and still had no trunk control. She
said she thought Carol would need 24 hour care and would need a lift to
get her out of bed and into a wheel chair. I was hoping she would be able
to use her right leg to help support herself while we moved her in and
out of bed. The speech therapist said she was not participating well because
of the tremors and sweating. I hope she will improve with time because
I don’t know how we are going to deal with the 24 hour care. My insurance
does not cover home care givers. Let’s pray for some more miracles and
let Carol suprise the doctors again.

8pm, I just talked with Carol. She was doing really good and speaking
louder. She was in the middle of dictating an email to me. Here is what
she wrote:

Dear Mr. Perfect (there is no room for error),

Hey Baby Hey Honey be careful driving here. There are people here
that love you and want you here. See you on Friday.

Love your wife,

Carol

I will be leaving tomorrow to visit over the weekend. I will not be back
until Monday night because I will be going through therapy with her Monday.
I will also be meeting with the doctor and case worker. I spoke with her
doctor today and we discussed her some different medication that might
help. He will start her on a new one tomorrow so I can see how she does
over the weekend. This drug is to help her think more, it kind of stimulates
her brain.

09.13.2002

I made it to the hospital in time to visit with Carol for an hour. She was in bed awake getting ready for me. She was doing good. Her sister said she was having problems eating for the last few days. She knew who I was. We talked for awhile then I let her get some sleep.

09.14.2002

8:30am, Carol was dressed but still in bed. I waited around until we could get her in the wheelchair and go eat breakfast. She was still having problems swallowing her food. Last weekend she was doing much better eating. After breakfast she had one group session to go to then I took her down to the gym to watch some fencing classes. We stayed for about an hour then went back to her room so she could get some rest before lunch.

1:30pm, Carol just went down for a nap. She did not eat anything for lunch. She drank just a little bit of boost. She is having a really hard time swallowing. We went downstairs at 4pm to see the handicap dogs and eat icecream. Carol did really well eating the icecream but still was not able to eat dinner.

09.15.2002

I had a good visit with Carol. She still is not eating well. There were a few times were she would not even drink the boost drink and we ended up giving it to her through the feeding tube. I have a hard time now feeding her. It is very hard to watch her try to eat knowing she is hungry and can’t do anything about it. She looks at the food and keeps trying to get another spoonful but I have to stop her because she already has food in her mouth and can’t swallow it.

09.16.2002

7am, I get in early because it is family training day for us. I walked into the room quietly because they don’t get the patients up until 7:30. I find Carol laying in bed wide awake looking up at the lamp and talking to herself. She was carrying on a conversation about buying a sable hat. The conversation made complete sense. She even said she needed a small hat because her head was not as big as her husbands.

We met with all the therapists and doctors through-out the day. By 4pm I was exhausted. There is so much information to process and figure out what to do. I don’t know if people realize just how much something like this changes a families life forever. I really feel for the boys (Jaime and Alexander). I really need to talk to them and let them know what is going on and what they are going to have to deal with. They still have a mommy but she will not ever be like she used to be. She was always playing with them outside and helping with their homework and taking them places. Right now the doctors and therapists say she will need 24×7 support and can’t be left alone. I will have to find some way to support her while I work and on top of all of this still give the boys the attention and help they will need. Carol still cannot help support herself on her right leg so a lift will be needed to get her in and out of the bed / wheelchair. It will be very hard to take her places because of getting her in the car will be next to imossible right now. Even if we could sitting in the seat will be hard because she still does not have trunk support and if I put on the brakes she may slip out of the seat.

If anyone has and suggestions then feel free to let me know. I am very tired and getting to the point where I cry everytime I think about Carol. I still have a hard time understanding why this happened to someone like her and coming to the conclusion that things will never be the same. Carol may not be able to have new memories because of the damage. I can’t imagine what she is going through and how boring her days must be. I just hope Jaime and Alexander will be able to deal with her being at home in the condition she is. She can talk to you if you start a conversation but usually will not talk to you first.

After talking with the doctors and case manager we decided to try go have the bone but back on in Charleston. Her projected discharge date is October 2nd. They will try to work out so she will leave Shepherd and go staight to MUSC. She would probably be there for a week then we are trying to find another inpatient rehab / nursing care facility here that she can go to for 30 days. Our insurance allows for 30 days a year. That will give me a little more time to make plans for her, then she will be coming home. I am hoping and praying that more physical therapy will do some good. I really hope she will be able to eat again and help stand up. One month in rehab is not alot for someone in Carol’s condition.

09.17.2002

I got back to Charleston about midnight lastnight. I had
a very hard time sleeping and woke up with a bad headache. I think everything
is starting to hit me and I am getting depressed. I really wish I could
stay home and take care of Carol. Well, back to work I go. I have not
seen the boys since Friday morning. I need to start doing more with them.

9pm, It sounded like Carol was having a good day. She ate some tomato
soup and drank her boost. The case manager told me she and the doctor
saw Carol this morning and she was wide awake and doing good. They had
increased her neuro-stimulant. Carol had been awake since 4pm and was
just getting tired about 9:30pm. I talked with her twice. She heard Alexander
in the background crying and made a comment after she gave the phone back
that I needed to go out back and get a twig off the tree and show Alexander
and that should make him be quiet. I also told her that grandma had to
spank Alexander today and they said Carol laughed. That was the first
time they had seen that. She did not vocalize it but they could tell she
was laughing and her chest was moving. We are not sure if they had given
her the Botox injection in her left pectoral muscle yet. We discussed
that Monday to help relax the muscle more. It is really stiff and causes
pain when we try to move her left arm. The injections can last up to six
months.

10pm, Carol was still awake so they called me again to talk to her. They were also laughing because Carol can say some funny things. Here are some of the things she said:

I asked her if it bothers her when we laugh at what she says. She said “No,
should it?”

She saw Papa Dan and Ted sitting by the window and someone said “Are they
your
family” she said “Yes, that is why I am the way I am. They are nuts”.

She said later on that maybe you should get a tree trunk for Alexander if he
kept crying not just a limb.

Ted was coughing and Carol asked for a piece of candy. He said “you will
choke on Candy”.
She said “it is for you silly to help your cough”. He told here there wasn’t
any.
She insisted there was candy in the purse over there. Sure enough, Laurie
had mints
in her purse that Carol saw her handing out about an hour before. Ted got
one and
said I am eating a mint for my cough and she made a funny face and looked
really
confused and said “That won’t do, mints don’t help coughing”.

At about 10pm last night, we were singing the Batman theme song and the
charge nurse
“Christy” was behind the curtain and said “Carol listen to my voice, who am
I?”
Carol said “Batgirl”.

Her roommate, Jill was asleep and the phone rang. I told Carol it was for
Jill. I said “who
is Jill?” She said, “The girl behind that curtain and she is suppose to
cook me some soup.” I said No she is asleep and she is your roommate. She
began yelling towards the curtain, “Yoohoo,
Jill, Wake up, wake up, wake up”.

I was doing the facial exercises and she wanted to “get creative and mix it
up”.

I just told her she put on quite a show for us and
was wide awake.
She said “I put on a good show?? I haven’t even taken my top off yet!”

This last one is from her sister-in-law Linda. She said we should install a webcam in front of Carol’s face so she could see her funny expressions
when she goes
back home. She said she wouldn’t like it and would
pick her nose the entire time and then smear the booger on the camara lens
and say “this one’s for you”.

09.18.2002

Carol had a good day. She participated in therapy and did some mouth exercises to help with swallowing. I talked to her twice. She speaks much better at night when she laying in bed. She is still not eating well.

09.19.2002

Carol had a good day. She ate a little more at dinner than she has been. She stayed up until 11pm talking with her sister and sister-in-law. She did take a short nap before that so that could be why she was awake so late. The doctor called my at work and got permission to perform the Botox injection. It can take a few days before we start to see any change in the muscle tightness. Carol seemed to be a little more aware lastnight. Before they left they asked Carol if she knew where she was. She replied, “Shepherd Spinal Center in Atlanta on the brain injury unit”. She normally will say in Charleston or in a hospital or rehab, sometimes she would say Shepherd Center.

09.20.2002

Carol had a pretty good day. Carol told her sister that she wanted me to sale her car and buy a handicap van and come and pick her up by Christmas. At this point she will pretty much be housebound because we will not be able to move her from the wheelchair to a car plus she cannot sit in a chair / seat unsupported. If anyone comes across a really cheap used handicap van let me know. Funds are really tight right now because of Carol needing day care. I was able to make it in time to visit for a few hours. I was told later that she was sweating alot during the day. We talked for a bit then watched a new show on TV.

09.21.2002

Carol participated in the group session this morning and has speech therapy. Carol ate really good at lunch, she finished all of the chicken and yams. She took a pretty long nap and has a few visitors. She did not eat as good at dinner.

09.22.2002

I spent all day with Carol. It was a rainy weekend so we did not go outside. I took Carol down to see my car to see if she would remember it. She said she did. I will be taking pictures of things around the house to show her next week. We are working on her memory. She did not eat much at lunch. We are going to see if she will eat some more tomato soup next week. She had some a few days ago and finished it all. We put Carol in bed so she could take a nap between lunch and dinner. She always wakes up when we put her in bed and sleeps when she is in the wheelchair. Carol told me to lay down and take a nap before I left. She asked me to get in bed with her. We checked with the nurse and she said it would be ok so I layed next to her and we took a nap for about an hour.

09.23.2002

Carol did really well in therapy again today. PT said she sat holding herself up with her arms for 30 seconds. She was sleeping at 4pm when her family got there. She did not wake up for dinner but was able to eat a little soup later. She went back to sleep and did not wake up even when they moved her into the bed. When I called back at 9pm, she was still resting. She would squeeze your hand but would not open her eyes or talk. She would still move the stuffed bear around. We are hoping she is just having a ‘down’ day and nothing serious is wrong. The nurses don’t seem to think anything is wrong.

09.24.2002

I called today at 7am to see how Carol was doing. Her nurse said she was awake at 5:30am. We checked back later at 1:30pm, she was still awake but did not eat. They are increasing the tube feeding at night to make up for what she is not eating during the day. They also put a blinder on her right eye to see if they can make her look more to the left.

I talked with Carol’s nurse about 7pm. She said that Carol had a busy day. She worked with physical therapy a couple of times. She did not take a nap until 4pm because PT was with her at 3pm. She usually takes a nap around 2 until 4. She woke up and was back to normal except she was talking quietly. I talked to her at 9pm.

09.25.2002

I was told Carol had another hard day with therapy. They seem to be working her more and harder (which is good). She is alot more tired at night. She is still not eating very well. So far she is still scheduled for an October 2nd release date. They have the wheelchair order into a company in Atlanta that will custom make it.

09.26.2002

Carol had another good day. She drank and ate a little better. PT made a cast of her left arm so they could make something to help keep the arm bent at night. Her left arm tends to extend straight or outward. Carol stayed awake from 4 until 9pm. She had a good visit with her family. I talked to her twice over the phone. The second time her sister-in-law called me and I was on the other phone. I asked if I could call them back in a few minutes. Later, Linda (Carol’s sister-in-law) told me that when she told Carol I would have to call her back because I was talking to someone else Carol said she was jealous. Carol also got to talk to the boys briefly so they could tell her goodnight. I told her that I was making some of her favorite soup and would bring it Saturday for her to eat. She liked that idea alot.

Here is part of an email giving an update about Carol lastnight:

I stayed with Carol until 1035pm then had to run to the grocery store for
lunch stuff, etc. She was doing so great I couldn’t leave her!!! She said she was tired once
but her eyes were wide open and bright. I left her alone to see if she would drift off about 930p while
I spoke with my new friends (the staff) but when I went back in she was wide awake and asked me to sit down and
“visit”. COULDN’T PASS THAT UP. We talked for that last hour. She actually did most the talking
believe it or not. Just like the good old days. She was still awake when I left but looked alot more tired.
She said to me if you have to leave me then “get some rest and come see me tomorrow”. Always worried about
everyone else. She is amazing.

09.28.2002

This weekend went pretty well. I visited with Carol for a few hours Friday night. She was pretty tired that night and went to bed early. Saturday we went outside and talked for awhile then she took at short nap. The breeze felt really good. I met with her speech therapist and we talked about a few exercises that I could do with Carol to help her eat and speak better. We both took a nap together that afternoon then watched the premier of Smallville together. She was quiet that night and seemed to be feeling bad.

09.29.2002

I brought Carol a frozen coke, that was her favorite treat. We went back outside for awhile then went back to her room because we were expecting company. Today she had three of my aunts, two uncles and grandmother visit. She also had her uncle, mom and dad and sister-in-law visit. She had a pretty good day. Still a little under the weather.
When my aunt was talking to her Carol would just look at her and smile. At one time Carol laughed at something she said. A called her and talked for a few minutes on my way home. She sounded good. She was watching Alias on TV.

09.30.2002

Carol was sleepy this morning when I check with PT. They
said she told them she was feeling so-so but did not know why. We finally
got an answer from Life Care Center about them taking Carol for at least
30 days. They wanted to make sure there was funding. Our insurance will
cover the 30 days. She said it would be $4000 a month after that. I told
them that we would find a way to cover that if we had too. They are also
checking to see if they could get her into a granted day care for a reduced
price. They don’t have a bed yet but may have one on Thursday. We still
don’t have a word on the surgery to put the bone or prosthetic back. They
are also going to give us a consult on her transportation needs. She will
need a handicap van that she can ride in with the wheelchair because she
cannot support herself in a seat yet.

9pm, I talked with Carol. She seemed to be doing a little better. I let
her know that she might be coming back this week and it would be nice
to be able to visit with her every day. I got her to laugh once when I
told her that Zanansia (our cat) was on David’s lap. She then meowed a
few times and her sister-in-law grabbed the phone and asked me what we
were talking about. I tried to talk to the boys a little tonight about
how she will be when she comes home. Alexander kept getting upset when
he asked if she would be in a wheelchair and I told him yes. He asked
if it would just be for a little while and I told him it would probably
be for a long time. He was upset and was talking about her being able
to play with him.