Mom Update, August 31, 2010, Tuesday

Mom had an alert day today!!! She opened her eyes a lot and tracked people with them. She was attentive to voices and looked at the speakers. She moved around as always as well. "The Rehab Crew" did an encore performance for my benefit tonight---but Gina (our family niece) stood in for Ava tonight. They were precious. Anthony Michael and Samantha are so attentive to mom and her needs when they are there...you should see them doing her physical therapy...and when mom coughs (not a great sight at all---sort of like choking), they comfort her calmly and tell her she is fine and to relax and that "It's OK Nonny"...I am so proud of them both...they make me cry when I witness their love and support for her. No news from the doctors yet today but we are hopeful. Ava and Lenny began college today!! Orientation...mom would have been so thrilled for them both. One of dad's dear, lifelong friends is very ill and failing fast...my heart breaks for my dad...I worry about how much more he can take...please continue to keep him in prayer. I know I've said it before, but thanks so very, very much for lifting us all up in prayer each day...it is truly the only thing that keeps us going. xxxxooooo

PS Mom had the green diapers today!!!!!! Yippeee for small miracles!!

"Hear my prayer, O LORD; let my cry for help come to you." Psalm 102:1

Mom Update, August 30, 2010, Monday

When I first saw mom today, she opened her eyes a lot but didn't appear to be able to see me...she didn't track me at all visually. It seemed that she was more in tune with me auditorily instead. I needed to go voice some concerns with the head nurse in charge regarding---a bag of garbage on the floor, used gloves on the chair, the room was dark with lights out (like a night time set up), her pillows were not set up correctly for neither her arms or her feet, and the diaper they had on her was far too small for her. I was very upset but kept my cool and firmly voiced my concerns... All issues were resolved by the time I left. Voicing the same concerns over and over again is frustrating to say the least. Please pray for resolve in this area. Also continue to pray that the personnel (CNAs, nurses, and respiratory therapists...) all assume a caring, kind, concerned, gentle affect with mom. I have heard that this type of situation persists in many different facilities and it is so very disheartening and upsetting to say the least. It is so important to have family and friends with mom as much as possible in order to avoid such problems.... the more present we all are, the more care and vigilance is directed at mom.

On a better note, I spoke to the nutritionist---our new hero!!! She said that, after 2 weeks of chasing, she finally reached the doctor and was able to tell him our concerns about all the medication mom is on. He agreed with us and her and said he would take her off the ZOCORE (cholesterol medication) and the Standing 9 p.m. Insulin shot!!!!!!!!!!!!!!!!! PRAISE THE LORD!!! If anyone has the time to, look up the side effects of ZOCORE and INSULIN and HEPRIN....if you have extended time, look up the side effects of Labetalol and Dilantin and Coumadin too!! Your head will spin. She said that the doctor didn't write the order to stop these meds yet but would chase him until he did so.

When Claudia and Dad arrived tonight, Claudia found the DOCTOR!! She asked to speak with him and he was very nice. He asked for background on mom....how she was before the aneurysm and after...(I CAN'T BELIEVE HE DIDN'T ALREADY HAVE THIS INFORMTATION ON HER AFTER ALL THESE MONTHS!!!!). Anyway, Claudia provided the background information, along with all our concerns about the facility and the medication. HE AGREED to WEAN HER FROM THE DILANTIN pending a phone conference with the doctor from the hospital. PRAISE GOD AGAIN!! He said he doubted that the meds are preventing mom from waking up...but he said he is willing to give it all a shot!!!! THE POWER OF PRAYER!!!

We next need to see about getting mom off the current blood pressure medication and onto the Diovan she was on before this all happened. And maybe off the Coumadin and back on the ECOTRIN? Pray for guidance for us in this area. Claudia reached mom's general practitioner, who is a doll, and he said he can't be mom's doctor out at the facility because he isn't affiliated with them but he'd help answer questions. The hospital doctor still hasn't called Claudia back yet.

BEST NEWS...while the doctor of the facility was talking to Claudia and dad, he asked where mom is at now and what her functioning ability is ... Claudia explained all and he said the 2 steps forward and 1 back pattern we are seeing is typical in the recovery process... HOWEVER...he asked mom if she heard what they all were saying, "Dotty, you're listening to us aren't you? Can you hear us Dotty? If you can hear us, blink your eyes twice" MOM DID IT!!!!! Dad and Claudia began to cry. Then he asked, "Dotty, if you can hear us, wiggle your toes" MOM DID IT!!!

CLaudia said it seemed like mom was focusing on her and dad and on the TV (MASH, mom's favorite show). She said mom actually kissed her good-bye when they left too.

KEEP PRAYING...it's working!!!

"The LORD will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring." Isaiah 58:11

Mom Update, August 29, 2010, Sunday

Mom had a sleepy day from start to finish. She opened her eyes a few times throughout the day, moved around as usual too. Her roommate was in a lot of pain the last day and a half (moaning and sometimes screaming as well)...maybe that kept her up at night? Hopefully, she will be more awake tomorrow.

"...and with his stripes we are healed." Isaiah 53:5

Mom Update, August 28, 2010, Saturday

Claudia went to deliver mom's therapies this morning and mom was very alert---eyes open wide, responding to voice, looked at Claudia's voice. The respiratory therapist spent quite some time with Claudia showing her how to clean out mom's tubing. Mom tracked Claudia and the respiratory therapist back and forth with her eyes. Lenny visited with mom most of the afternoon. Along with doing her physical therapy, he brought a book on tape and listened to it with her for several hours. The medicine nurse told Lenny that mom keeps her eyes open at least 20 minutes every night and is starting to recognize their voices!! (She does seem to have her days and nights mixed up). Dad, Terry, Claudia, and Aunt Sophie joined Lenny later in the afternoon. After mom was suctioned, they asked mom if she felt better and she nodded her head up and down---"YES"!!!!! She has never done this before!! Her eyes were open alot again too!! While sitting around in Claudia's yard tonight, we were remembering funny mom stories.

"Arise O Lord: O God; lift up thy hand and forget not the humble" Psalm 10:12

Mom Update, August 27, 2010, Friday

Mom had a GREAT day today!! Her eyes were open most of the day. Claudia and Terry visited her early this morning and Claudia said that Mom opened her eyes for a while and seemed to recognize her. She didn't look disoriented. Anthony, Con, Anthony Michael, Sammy, Dad and Aunt Sophie all visited next and they reported that she opened her eyes most of the afternoon!! Once, she opened them for 4 minutes!!! She also followed the command to open them as well several times. When Con called her, mom said, "WHAT?" out loud, audibly---3 times!!! She said "Ow" out loud for me later on. When I visited, she opened her eyes for most of the time I was there--too many times to count. She looked puzzled when I was there; but Dad said she seemed to recognize him too---smiling at him. I love days like this with mom. I hope the progress continues! No word from any doctors today. Lenny and I and Anthony, Con and the kids are going upstate tonight through either Sunday or Monday.

"Pray without ceasing." 1 Thessalonians 5:17

Mom Update, August 26, 2010, Thursday

Mom had another sleepy day for the most part. Opened her eyes and moved around but very infrequently. Claudia and Terry visited this morning, followed by Donna, Dad, Aunt Sophie and me. We all delivered her therapies (physical, auditory, music, cognitive). Mom has a new roommate. She seems like a sweet person. Her name is Debra...please pray for her...she looks very sick (maybe all of about 70 lbs.). I met her sister, who said she, too, was her only surviving relative. While I feel sad for them, I do feel blessed that we have so many family members who we are all so close to. Claudia spoke at length with the nutritionist, who informed her that the blood work we ordered came back. Mom's blood sugar was tested and it came back in the normal range (6.1) on the average. Every day, multiple times a day, mom's sugar is tested through a prick in the finger and measured. This method only measures her sugar levels at that moment but doesn't provide an overall average. The blood work served to do this. Based on the numbers here, the nutritionist is recommending to the doctor that mom stops her 9:00 p.m. insulin shot. Mom receives an insulin shot each night at 9:00 p.m. but then only receives insulin on an "as needed" basis during the day (which is hardly at all). The cholesterol blood work came back fine as well, though mom's HDL (good cholesterol) numbers are low. This is due to lack of exercise. As such, this doesn't present a problem with cholesterol. The nutritionist is also recommending that mom come off the ZOCORE as well. PRAY THAT THE NUTRITIONIST REACHES THE DOCTOR QUICKLY AND THAT HE TAKES HER OFF THESE 2 MEDICATIONS. We'd like her to be as drug free as possible. We found out that it appears that mom's current GP (general practitioner) can continue to be her doctor and can send for her charts and records and make recommendations. This is a Godsend. On the other hand, the respiratory therapist from yesterday and today is very rude to Claudia. She actually laughs and patronizes us all. Mom has had a runny nose for a week or 2 now. Though the people at the facility claim she is in an allergen free environment, this is not so. We are trying to get mom her allergy shots or allergy medication to alleviate the post nasal drip and runny nose. This particular therapist asked Claudia how she knows mom has allergies? In a rude tone. Claudia explained all to her and assured her that the facility is NOT air tight and that allergens can definitely be carried in from the outdoors and affect mom. When Claudia asked what was being done for mom's runny nose and excess sinus drainage...she received no answer. I feel like help can't come quick enough for me. I feel so helpless all of a sudden...but we will march on and continue to advocate until mom gets what she needs!!!! PRAY MORE!! Thanks...xxxoooo

"Fight the good fight of the faith." 1 Timothy 6:12

Mom Update, August 25, 2010, Wednesday

Mom had a pretty sleepy day again today. She moved around a bit but was mostly sleepy. I visited with her this morning. Dad and Aunt Sophie came in the afternoon, and JoAnn, Claudia, Ava, John, Terry and I visited with her tonight. Dad reported that she opened her eyes once, moved around a bit, but slept. Dad did her physical therapy and talked to mom. This evening, she opened her eyes and focused on Claudia and Ava---when she looked up at the lights, her pupils became smaller!! Claudia did her physical therapy, then we played the Sounds at Home and Sounds Outdoors CDs for her and labeled the sounds. Each time we visited, we had to fix her pillows. One of the triangle pillows I made her is missing again...I hope it turns up--- we need it for positioning her arms properly. The best news of today was that, when I visited with mom this morning, she opened her eyes widely, naturally, and she looked right at me and made eye contact!!! She maintained eye contact and tracked my movements as well!!!! She looked like she recognized me because she looked relieved and comforted to see me and she even smiled at me as well!!! She then fell promptly to sleep. Pray for direction in finding the right outside doctors for mom...I am feeling that we need some outside opinions. Thanks.

"...I lay my requests before you and wait in expectation." Psalm 5:3

Mom Update, August 24, 2010, Tuesday

Jean and Terry visited mom this morning and did her first round of physical therapies. They found her TV turned on when they arrived (to Maury Povich of all things!!!), which leds me to believe that the aides are watching her TV at night... We have a full list of channels taped to the TV that mom enjoys (and we hardly ever play the TV so that she doesn't desensitize her auditory input and tune out all auditory stimulation). Anthony and Samantha visited at midday and continued her therapies. Dad and Aunt Sophie (yup, she's back at mom and dad's for a week or so) visited mom in the afternoon. Con, Anthony Michael, Samantha, Aunt Sophie and Dad visited mom this evening. Everyone said that, though she opened her eyes a few times at each visit and moved around as usual, she had a sleepy day. Claudia is trying to contact her doctor from North Shore Hospital so that we can get some advice from him but no luck yet. We are still waiting.

"God provides for those he loves even while they sleep." Psalm 127:2

Mom Update, August 23, 2010, Monday

Mom had a good day. Claudia, Jean and Terry visited with her early this morning to do her physical therapy/ range of motion exercises. Terry also did aromatherapy with her (she responded by shaking her feet--and liked dad's aftershave smell the best today). She sneezed out loud while they were there--that's a first. She also had a runny nose at first when they arrived---they cleaned her up and set up her pillows. Claudia brought the head nurse into mom's room to show her the mess the CNAs made of her pillow placements. The nurse said she'd take care of it---Claudia became sort of forceful in her request for the nurse to do so---finally (the pillows are never placed correctly). Claudia mentioned that one of the respiratory therapists thought it was terrible that mom has someone with her almost all day long---that she never "gets a break." It shouldn't, but it always does, appall me every time ignorance comes from a professional who should know better. It frustrates and infuriates me sometimes too. Look up any information on people in a coma and you will find that the person is NOT to be left alone unstimulated 24 hours a day so that he/she can drift further into the depth of the coma...!!! Good Lord, help them. Seriously.

When I arrived midday, her pillows were almost correct (the arm ones were still not correctly placed) and there was a long, rolled up light blanket between her legs and feet; something new. The pillows are supposed to be placed in a fashion that looks like mom is sitting in an armchair. The triangle pillows I made are to be touching the bed on each side of mom and on an incline that rises away from her body...on top of these pillows, there should be a bed pillow on each side of mom that is rolled in half...mom's elbows go out to the side of her and sit on top of these pillows and her wrists and hands lean on the incline of the pillows I made for her. Her feet are supposed to float freely over the edge of the pillow under her calves. Mom mouthed "Oh my God" once during physical therapy on her right side (which is now sore more than the left side). Dad saw mom when I left and spent the afternoon with her. He said that she opened her eyes a few times and that, during physical therapy with her, she lifted her leg by bending her right knee independently off the bed. This is wonderful. He said that when the nurse came into the room to do some routine care on her, mom's eyes opened and she moved both her head and her eyes to track the nurse's whereabouts in the room!! Lenny visited mom tonight and did her last physical therapy and prayers before bed. He said she opened her eyes a few times while he was there with her, but then went to sleep.

I spent the evening doing paperwork with dad---identifying which of the random checks from insurance (in amounts like $6.58, $43.76...) went to which doctor's bill (or if we even had a bill from a specific doctor yet or not). Anthony helped dad sort through checking account statements for the last 5 years---trying to identify which sums of money went to pay what bill... NIGHTMARE. I don't know how dad sorts through it all each morning--it covers his entire dining room table. Please continue to pray for peace for dad and strength to endure. Thanks.

As always, your prayers are what get us through all this muck and mire. xxxxooo

"But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, 23 gentleness and self-control." Galatians 5:22-23

Amen and good night.

Mom Update, August 22, 2010, Sunday

Anthony Michael, Samantha and Ava visited mom this morning with Anthony and Con. The kids formed the "Rehab Crew," a musical group, for Mom (or Nonny as they all call her). They made up 3 songs (The Nonny Song, The Better Song, and The Nonny Rap) for mom and Ava accompanied on the guitar! [Lyrics are at the end of this e-mail update] The nurses came to mom's room as they sang and one asked, "What are you guys the Partridge Family or something?" Mom would have gotten a kick out of that! Claudia, Terry and Dad came to visit next and the kids did a repeat performance for them. One song was fast, one was a rap, and one had no guitar but had hand motions (like "Gladys Knight and the Pips" as Claudia said!!). Ava then played "What a Wonderful World" on the guitar and everyone sang (Anthony Michael knew all the words and lead everyone). As the kids sang, Mom smiled a real smile for the first time!! Her teeth showed and all! Later, Claudia said that mom seemed to want to wipe her mouth, so she gave mom a damp cloth to use and mom did a deliberate and detailed job of wiping her mouth alone --- in the corners, across lips...!!! Claudia then asked her to do it a few more times and mom followed the command! Dad said that, as Mom was holding his hand in hers as she frequently does, she took his hand and rubbed it on her cheek... JoAnn and I came to visit mom mid-afternoon. She opened her eyes a lot and seemed to really track and focus on us as well. We all did her physical therapies throughout the day. She is back to moving around a lot at times again. Now that her left arm has no more or reduced edema, she moves it much more as well. Something to be careful about is that, while mom was holding one of the tubes we bought for her, she moved it to her face (there is string that hangs out the ends and she seems to like the feel of it on her cheeks and chin---she brushes it against these areas herself!) but she moved the tube to her eye area and almost poked her eye with it (her eyes were sort of semi open at the time). It was as though she couldn't figure out how to move it from her eye. She followed the command to touch her nose for me. Sister Suzanne, Rita and Helen came to visit later in the afternoon. Lenny came last (fresh from a football game with friends! Filthy!!). Mom had a blessed day today.

"Our mouths were filled with laughter, our tongues with songs of joy." Psalm 126:2

The Nonny Song (by Ava, Anthony and Samantha)
This is the nonny song
it isn't very long
so wake up before it ends.
We really miss you
We wanna kiss you
So open your eyes up if you can.
Ant and Sam are here and Ava too
We wanna tell you that we love you.
Uncle Anthony and Aunt Con
just wanna say, "Hey mom"
So this is the end of our song
told ya it wasn't long.
But we said all we needed to say
So wake up now so you can sing along
to this really silly song.

The Better Song (by Ava, Anthony and Samantha)
You gotta get better
so you can wear a sweater
in any kind of weather
you gotta wke up
you gotta come home
so you can answer your phone
so poppy don't groan
you gotta wake up
you gotta make kale chips
and Sam's stuffed mushrooms
Because we are so hungry
you gotta wake up (2xs)
Just please wake up

The Nonny Rap (by Ava, Anthony and Samantha)
We're here in the Rehab Center (Center!)
So we can watch you get better (better!)
You're doing really goo with your therapies
Soon you'll be jumping on our trampoline
This rap is for you so you can wake up
We are running out of rhymes so soon we'll shut up
We made it just for you
This was the rap styles of the Rehab Crew!

Mom Update, August 21, 2010, Saturday

Anthony, Con, Anthony Michael and Sammy visited mom this morning and did her physical therapies (range of motion exercises). Donna and Aunt Peggy came next and did some aromatherapy with her and talking,asking questions (cognitive therapy) and music. Dad joined them in the afternoon. I came to visit around dinner time and only Dad was left there. I did mom's nails and some music, and her physical therapies again. I chatted to her too. Mom moved her left arm alot today and her fingers on that side too!! This is amazing. She also wasn't so swollen with edema on that side either the last few days (new pillow positioning helped there--the physical therapist came in and showed us a new positioning technique earlier in the week). On the down side, it seems that one of the pillows that I made for mom's arms, that keeps them raised appropriately, is missing. The nurses and aides are on the lookout for it...so hopefully it will turn up. Mom moved her mouth alot as though talking but no one could make out the words. She moved both legs and feet and toes. She moved her feet alot while listening to music on her IPOD. When the CNAs came in to move her back to the bed from the chair, Con stayed in the room during the change and reported that mom followed their directions to "hold onto the bed rails" "let go of the bed rails" etc.!!! Dad said that mom opened her eyes alot today and she even looked around the room and at him when he spoke to her when they were alone. He told her where she was and that she was doing well...then he said he asked her if she knew who he was... At one point this evening, mom just looked so much like she was sleeping, and when she stirred, she looked like she might just wake up.....

"...the hour has come for you to wake up from your slumber..." Romans 13:11

Mom Update, August 20, 2010, Friday

Mom had a good day. Claudia and Lenny saw her early today and did her physical therapy and also set up the radio for her to listen to for a while. Lenny said that mom was tired. Dad, Aunt Carol, Flo Aubin and mom's friends from choir came to visit next. Dad said mom was tired at that time too. I came later in the afternoon and did her physical therapy again. She was more alert. She was also able to follow the commands to "Touch your nose, head, mouth, stomach..." and to "Lift up your hand" (right hand 3 times). Dad and I had her hold onto these two plastic tubes we bought for her and then slowly lifted them so that she had to pull down as we pulled up---she did well with this activity too. Later in the evening, Lenny went back to do her physical therapy again and set her up for bed (make sure all the pillows on her ankles, and arms were set up correctly), and say some bedtime prayers. He said she was pretty alert and opened her eyes alot. She currently has no roommate still. Last night when Lenny and I arrived, a new roommate was there but she was gone by this morning. She appeared to have mental difficulties and was trying to both get out of her bed and pull out her trach over and over and over... I am relieved she is gone...I was worried about mom's safety with her in the room and was planning to camp out there at night to protect her if need be. I prayed that God would place only whom He wanted with mom...hopefully, that's who she'll get, if anyone at all. Lenny and Claudia visited mom's old roommate this morning and she was so happy to see them.

"We wait in hope for the LORD; He is our help and our shield." Psalm 33:20

Mom Update, August 19, 2010, Thursday

This is a long e-mail update today. For that reason, I am opening with the scripture verse...
Matthew 5:3-12
3 "Blessed are the poor in spirit,
for theirs is the kingdom of heaven.
4 Blessed are those who mourn,
for they will be comforted.
5 Blessed are the meek,
for they will inherit the earth.
6 Blessed are those who hunger and thirst for righteousness,
for they will be filled.
7 Blessed are the merciful,
for they will be shown mercy.
8 Blessed are the pure in heart,
for they will see God.
9 Blessed are the peacemakers,
for they will be called sons of God.
10 Blessed are those who are persecuted because of righteousness,
for theirs is the kingdom of heaven.

11 "Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. 12 Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.
(from New International Version)

Mom had a pretty active day today...moved all legs, arms, wrists, ankles...and a lot too! She opened her eyes frequently but all under a minute. She mouthed "Ow" and "What" but didn't speak out loud today. We had our Team Meeting and it went well. They spent 1 hour and 15 minutes with our family---8 of us were present (including 4 of the grandkids). After the meeting, we all went back to see mom and you can tell by the look of her face/mouth area, that she enjoys having the kids with her. I spent the afternoon with her and among other things, we read a book.

Mom has a new roommate. We don't know her name yet. Pray for a peaceful coexistence while they are together there. Mom's old roommate's cousin stopped in this afternoon and commented that "My cousin is very upset to be moved from your mom. The social worker called last night to say she is very depressed about moving. She has no family and so she enjoyed being with your family. Your family brought life to her and joy. Would you visit her upstairs sometimes?" I assured her that we would, indeed, visit her. Her comment filled me with humility and gratitude.

Dad had an extremely difficult afternoon and evening...feeling very low and crying alot. We all came to his house and sat with him and comforted him. Please continue to remember him in your prayers.

Anthony Michael, Lenny, and Ava all had questions for the Team. Anthony Michael asked a question that astonished them all (If tremors mean that there is a brain/muscle connection, then why were we told to stop the tremors??) We began the meeting by assuring them that we only want mom to get well and to do all that is best for her in that direction of wholeness and wellness (we have been told that we intimidate people there because we are always around, taking notes and data on mom and her progress, and because we call meetings and take notes there too]...in reality, we only care about mom getting better. We take notes so we don't forget (an easy thing to do when the stress level is high), and so that we hopefully see improvement in Mom (we do).

These are the questions we asked at our meeting (I prepared a copy for each of us):
4 Main Reasons for this Meeting:

1. We are delivering all her therapies and are with her monitoring her every day—so we want to share what we observe, along with our concerns about mom.

2. We want to discuss the side effects of the medications mom is on and the possibility of decreasing or ceasing the use of some of these drugs (because mom is very sensitive to medications and frequently has experienced side effects).

3. We want to be sure that the Physical Therapy—Range of Motion exercises we do match what the CNAs do on a daily basis and know when the CNAs do therapy so we don’t do too much or too close together or overlap therapies.

4. Frequently, it appears that many therapists say that there is ‘no response’ from mom, yet many night CNAs and nurses see responses—what is the communication line like between people who work with mom?

_____________________________________________________________

Questions and Concerns:

1. In order to continue to be active members of mom’s recovery, we are requesting copies of all her charts so that we can all be on the same page.

2. Over the last 2 weeks, mom is not moving as frequently or the same appendages as she had been. Decrease in rate and frequency of movements.
At the same time, we have observed new movements (moved legs off bed/chair) and audible oral language (Monday morning—what she said to me, Tuesday night what she said to Con and Claudia, last night what she said to Lenny and I).
a. Does she need another CAT Scan/Brain Scan???? to determine if
everything is alright?
b. Is the decrease in movement due to increase in types of responses
and actions? No sensory integration yet, but new circuits are opening?

2. Does she get EEGs here?

3. Drug Side Effects:
a. Many of the medications mom is currently on are new for her since
the aneurysm and stroke. Prior to the aneurysm and stroke she was on:
-Diovan (Blood Pressure)
-Zyrtec (allergies) [Respiratory therapist said she should have
her allergy shots here]
-Allergy shots (post nasal drip...airborne allergens...)
-Ecotrim (1 daily)

b. What meds is she given here?
-Heprin
-Coumadin
-Iron
-Lasix
-Prilosec
-Zocore
-Dilantin
-Labetalol

Is she on any sedatives here at all???

We read up on some of the side effects, many
of the drugs she is on note “difficulty breathing” as a side effect. How
does this effect her weaning from the vent?

How does it effect her ability to be alert?

Some medications cause sleepiness.
When are these types of meds given??? Can they be given at
night? She is sleepy around midday through 3-4 p.m.

Some side effects are hair loss—we noticed this.

Some side effects are joint pains...we noticed her right side, which is
her good side, is now very sore the last week during range of motion
exercising.

Some side effects are peripheral edema—her right arm still is like this

Some side effects are muscle weakness and stroke symptoms like
confusion, vision distortions and problems, one-sided weakness... we
observe all this in mom.

Some side effects are tremors and muscle spasms–we saw this but
how do we know that they are from brain connections and not side
effects of drugs?

Some cause raised blood sugar levels.

c. How can we get her off some of these meds?
1. She has experienced coughing problems from some blood
pressure meds she was on in the past...the medication she is on
now is new. She was on Diovan which worked well for her.

d. Can we get her off the PRILOSEC? And control acid reflux through
diet instead?

e. Does she need BOTH heprin AND coumadin??? bad side effects
from coumadin!!

f. Isn’t she supposed to get periodic CAT Scans with Dilantin?

IT APPEARS THAT THE MEDICATIONS ARE COUNTERPRODUCTIVE TO WHAT MOM’S RECOVERY...we are not interested in maintaining her life comfortably...we are interested in rehabilitating her.

4. Mom’s awake time is sometimes around 11 a.m. but mostly 4-7 p.m.
And also apparently at night according to the night CNAs and Nurses

5. Physical Therapy questions:

a. Are the pillows I made for her good to use? Jessica said yes use the
arm pillows. PLEASE SHOW ALL CNAs how to position pillows and
nurses too!!! For her arms and to float her feet!!!

b. Kareem was supposed to investigate equipment for mom’s arms to
use in the chair — what is happening with that?

c. Can the facility provide appropriate pillows to use with mom on legs
and arms???

d. Sore on left leg in back—keep on pillow or exposed to air to heal?

e. Would temperpedic pillows work well for her head? Legs?

f. If tremors are good, why stop them?

6. Respiratory Questions:

a. What meds are given to open airways lately?

b. How often are they given?

c. How does weaning from vent work??

7. Can she remain alone as long as possible so that she may recover in the ways we are trying to provide for her???

a. TV constantly on is NOT GOOD for her

b. We are there a lot and need room to work with her

8. Hearing Aides are ultimately the responsibility of the facility not ours. We participate in putting them in and taking them out—but CNAs need to be responsible too. Like when it is shower time... Someone became upset and bothered with me when I called yesterday to remind them that they were in because we had been there to work with mom and now she was getting a shower.

9. What were recent blood work results?

a. What was cholesterol?

b. How has her blood pressure been?

c. Is the blood sugar monitor used only on her?

d. Use alcohol wipes before and after each injection or puncture for
blood sugar monitoring.

10. What we are doing with mom:

a. Range of motion exercise 4 times per day

b. Giving her something to hold in right hand so she doesn’t hold the
vent line (thin piece not tubing)

c. Using rolled up towels to keep hands open in natural position

d. Flat rub and move fingers in left hand frequently to loosen

e. Sensory stimulation

f. Music stimulation

g. Flat hand massage with lotion

h. Aromatherapy

i. Cognitive therapy — asking her to follow commands or answer questions

11. What else should we do?

12. What are you doing?

The Team’s Reply: (We don't necessarily agree with all they said...)

Degree of alertness at night — is due possibly to sleep wake cycle at night and day—

Passive range of motion exercises are more preventative management for no contractions or atrophy— whether or not she is alert or awake while we do it doesn't matter — it is good too — no atrophy —
sleepiness doesn’t matter —

Her motions were non-purposeful — gradually becoming more purposeful —

will suggest to doctor to have another brain scan
No real necessity to worry -- no symptoms of stroke or anything but if we see facial droop, non functioning movements...

At our request, they will order another neurological consult----

Forward any records here at facility to new neurologist if need be

They will ask the neurologist about the dilantin being given for seizures to see if she can come off it

No excessive coughing that they see in respiratory

Coughing is a good thing— clearing herself

Allergies shouldn't be a concern because she is in a controlled atmosphere — here – all is controlled in filters in vent
Allergies unlikely with vent

they have to reach a certain level INR in order to discontinue — INR level is monitored every week — blood thinness — clotting level —

Coumadin forever maybe
Heprin was just discontinued

No side effects relating to breathing difficulties on a trach or vent — vent does all for her
Exhale CO2 on settings went up...out of range....comfortable where she is now and CO2 is in upper range...could be due to the secretions...suctioning more frequently....CO2 levels are high now....need to decrease....

Is there a way to stop the secretions....medication?
Could be cyclic lasts a few days and goes away....
Steroids are not necessary now—not bad enough

Joint pain on right side ---- she can get tylenol... if increase in pain with no touch... if it gets worse— can have pain medication....

No pain medications now....

Their philosophy is no sedatives....

Respiratory rate goes up during care only and then stabilizes

Peripheral edema is not from not moving—it is from congestive heart failure —

Positional edema — from limb being below the heart — she would have to have an underlying heart condition to cause that

When there is edema what moves blood and liquid around lymph system doesn’t work right
Edema — lasix helps but we think it isn’t working

Weight loss of 13 pounds total

They will show staff again what to do with pillows —

Left leg sore OK on pillow

Can we get her back on the Diovan and not on current med??? They will ask doctor...

How is her blood pressure now — Blood pressure med is every 12 hours but not given if pressure is good... given only as needed

Needs prilosec or peptic ulcer disease prophylacsis happens

Blood on fingers...always

Review with nurses to wipe injection sites with alcohol before and after injections

Blood work — all good to date

Zocore — request cholesterol reading — if good, can we take her off med

Let the tremors happen but if it gets bad — then stop it — or if interfering – stop it ---- don’t continue range of motion if tremoring —

The physical therapist knows what is a tremor and what is a seizure — global shaking could be seizure

Seizures can show up on vent — but not all show up

Will use empty bed in her room as a last resort—

Just roll the towel no rubber bands —
Stuffed animals OK

Snore sound from secretions and air leaks

Ulcer/Bed Sore on lower back at spine is all healed — deep tissue injury was totally healed —

Mom Update, August 18, 2010, Wednesday

Mom had a good day. She got her hair cut (they didn't take much off, but it looks good!). Yesterday, I forgot to mention that mom was taken to the recreation room in the afternoon...there was a live singing performance. Dad said it appeared that she slept through it all---but I know she is able to hear. Today, Claudia and Jean did her physical therapy again early in the morning. The physical therapist came in to assess mom's arm (left, with edema) and to show Claudia how to position her arms using both their pillows and the ones that I made. Her arms are now almost in a position as though she were sitting in an armchair---elbows out and at chest level..bent up at the wrist. Dad, Anthony, Con and Anthony Michael visited with her next. They said she was very sleepy (12-3 appears to be her sleepy time). Lenny and I visited this evening and she opened her eyes 6 times---widely!! The longest was 2 minutes 20 seconds and the shortest was 50 seconds. She moved her mouth a lot as we talked to her and answered, "No" (audibly) when we asked if she wanted to exercise. She was very alert. It appeared she enjoyed when Lenny spoke to her. The rash/sore on her left leg looks better today---not gone yet, but better. Tomorrow is our team meeting with the staff at 11:00. Pray for wisdom and a productive meeting tomorrow. Thanks...xxxooo

"Blessed is the man who finds wisdom, the man who gains understanding," Proverbs 3:13

Mom Update, August 17, 2010, Tuesday

Mom had a typical day of the usual movements. She still doesn't move her left hand and fingers too much, but does minimally move them. She said, "Yeah" in response to the question, "Do you want to exercise" and "What" in response to Anthony calling her. Claudia, Anthony, Con, Anthony Michael and Sammy visited her this evening (they just returned from the Poconos!!). Dad is still trying to plow through the paperwork for Medicaid, along with the insurance claims from Medicare, his, and mom's insurance coverage (along with my assist)...it is totally confusing to say the least! There has to be big bucks in designing a better system!! The checks that come to him aren't even marked with a doctor's name, or a claim number!! His and mom's family physician offered to lend his secretaries to help in the insurance saga. Mom was quiet during dad's visit with her this afternoon. And she was relatively quiet with me this morning too. She opened her eyes for us all over the course of the day (about a dozen times total).

I forgot to mention Sunday that, while parked at a median in a parking lot near the rehab center, I finished a phone call, got out of my car, and forgot the median was there... My feet initially touched the pavement of the parking lot, but as I turned to begin to walk, I tripped (or flew to the ground is more like it) and fell---my knees caught the far edge of the median---I skinned my knees, arms, hands, elbows, ripped the knees of my pants and they also had skid marks of dirt strewn across them!!! I lay stunned, face first on the pavement---humiliated and hurt and managed to get up and crawl to the car, climb inside and sat and had a good cry!!! I had to run to a store to buy new pants! Needless to say, my right knee is slightly swollen and has been popping out since then---maybe remember my knee in your prayers!! As Con says, "Never a dull...!!!" But so much for my saga!!

"I long to dwell in your tent forever and take refuge in the shelter of your wings." Psalm 61:4

Mom Update, August 16, 2010, Monday

Mom spoke today!!! Out loud!!! Her eyes were closed, but she actually spoke several times to me! Her voice was low but audible and it is also raspy, gravelly. This all occurred from 12-1:00 p.m. while she was still in her bed. I came into her room and she was peaceful looking and calm...looked really comfortable. I said hello as I always do while stroking her hair and then I told her I was going to wash her face (our routine---I wash her face, eyes, nose, ears...). As I began to wash her face and eyes and nose, she turned away from me slowly and said, "Leave me alone." I was stunned. I froze. Her eyes were closed but she talked!! I asked her if she just said what she did, but she didn't reply so I pulled myself together and continued with our routine. Next, I stroked her hair and leaned in close to her ear and said, "Hi Momma, hi, it's me, Kathy" over and over and then she said, "Heelllooo"!!! Eyes still closed. She was then silent so I waited and then said, "OK so let's do your physical therapy now...OK? Let's do your exercise, that sounds good, doesn't it?" and she said, "No." As I did her physical therapy, she said, "Ow" out loud too twice. Then I said, "Does that hurt mom?" and she said, "No" --- OK wrong answer, but developmentally, when children learn to speak, they say NO to everything before they use the word YES. Then later, I was rubbing her face with a soft, silky, stuffed animal and I said, "Feel how smooth that is?" She looked like she liked the feeling but as I repeated the phrase over again, she said, "No" This is sooo amazing!!!! PTL!!!!

She moved, but not much (this is the pattern...whenever she first does something new, she only predominantly does that and nothing else...sensory integration?). She opened her eyes 3 times for me just a slit and opened them widely for dad several times.

Her blood sugar was good, but her CO2 levels went into the 40s yesterday so they raised the vent from RATE 12 to 14 again...however, by 3:00 p.m., her CO2 level was in the 30s which is good. Dad said that they gave her a chest xray this early evening---no results yet.

Keep praying for her to breath on her own and to become more alert!!! Thanks! xxxxooo

"The Spirit of God has made me; the breath of the Almighty gives me life." Job 33:4

Mom Update, August 15, 2010, Sunday

Mom had a good day today...seemed to be more alert/awake (though eyes were closed most of the day). She didn't appear to be "out of it" type of asleep...just asleep because she was tired occasionally. While doing her physical therapy this morning, I noticed that there was a red, almost bruised, area under her left leg were her leg usually sits in the leg rest I made for her to keep her feet suspended (the physical therapists said the heels of the feet are a place of high incidence of bed sores so keep them "floating" [not touching the mattress/suspended in air] as much as possible). I removed her legs from the leg rest and had both the CNA and Medication Nurse look at her leg. The medication nurse thought it didn't look too bad and agreed that we should keep both her feet and her leg suspended until the area heals and the redness goes away. This red spot was not there yesterday at all or last night. It also is not an open wound. PRAY that the area heals and doesn't turn into a bed sore. It looked better tonight. Though Mom didn't open her eyes for me today, she did open them 15 times for dad and Terry this afternoon. Dad also said that mom took her right hand and reached for her left hand and held one hand in the other over her stomach! It seems that she makes progress each day. I bought some hand towels to roll up and place in her hands for a more natural open hand position as mentioned yesterday.



We are planning to meet the staff at their next Team Meeting (hopefully this week). We all need to be on the same page and everyone needs weekly updates on Mom's status as well. If anyone can think of any pressing questions we should ask, please feel free to suggest some to us. Among those we plan to ask are these:

-Are the pillows/rests I made for mom's left arm with edema and for her legs too firm to use? Can they cause a bed sore?

-Would a tempeurpedic pillow be good to use for her head?

-Is it possible for her to be in a room alone (there are many empty rooms/people with only one person in the room) --- [her roommate, while very sweet, has her TV on pretty loud at all hours of the day and night; this is not good for mom because the stimulation will become 'white noise' or background noise and dull her auditory awareness---it also zaps all her energy!! Can make her more tired than she already is.

-What medication was given yesterday to open her airways? Is it new or always used? (she is breathing much easier today as a result!! Almost no coughing, and her Tidal Volume was between 586-632 which is good)

-Discussion of the side effects of the drugs she is currently on (many of the common side effects of these drugs are sleepiness, confusion, blurred or double vision, DIFFICULTY BREATHING!!!!, edema, high blood sugar, hyperglycemia....and many other lovely things). Does she need all these meds any more??? Can they be discontinued or decreased?

-Is it possible to get a foot board for mom?

-Reinstruct CNAs in how to float her feet and elevate her arm with the edema----(both are never done whenever we arrive)



It is so disheartening, day after day, to see that no one really cares about the people in the facility---it's all about maintenance not restoration. Pray for a renewed awareness in the staff of what they are capable of doing to make positive changes in the lives of the people in their charge. Pray to help them become passionately involved in their work and the people they care for. Pray for a more positive atmosphere and one that breeds renewal and restoration in everybody there (staff and patients alike).



"Work harde so God can say to you, 'Well done.' Be a good workman, one who does not need to be ashamed when God examines your work." 2 Timothy 2:15

Mom Update, August 14, 2010, Saturday

Mom had a relatively quiet day today. She opened her eyes only 12 times, moved both legs and arms off the surface of the chair in a startle response while she slept, said, "Ow" and "What" once or twice. Dad and I visited with her throughout the day. I did her physical therapy 4 times, some aromatherapy (slight response to chocolate and frankincense), and she listened to her IPOD on the docking station (MaMa Mia and Phantom soundtracks)---she loved the music, of course.

She needed insulin around noon---blood sugar was up to 196 but back to normal by 5:00 p.m. (this is typical with people who are immobile and tube fed). Dad said that she also was given a medication through her trach to help open her airways more (he didn't ask for the name of the drug). This is the first time we heard of such a drug being given (a respiratory person gave it to her).

Mom was visited by Uncle Mike (her brother) and Aunt Pat (her sister-in-law) today! They both talked to her, stroked her hands and arms, and Uncle Mike even played the guitar and they both sang to her as well!! Aunt Pat (whose background is in the medical field) gave us some insight and support on what to do and what we are doing already. They both were with us the night all this happened to mom and were such a huge help then. Some of the suggestions she had were to:
-Roll up a few hand towels and give them to mom to hold (this will keep her hands in a more naturally open position)
-Continue with the physical therapy/range of motion exercise we do already
-Any massaging should be done with open, flat hands/palms and NO squeezing at all (that could cause a blood clot to travel). A smooth, flat handed rub without squeezing of any kind.
-Find out when the last EEG was done and ask when the next one should be
-Ask for, or make, a foot board for mom's feet which should be used all the time. This is a board that is padded with towels and a pillow case that presses up against the soles of mom's feet in order to support them in a standing position so that her feet don't "drop" (this means toes and feet straight forward in line with her legs). If her feet do "drop", then she wouldn't be able to walk again
-Keep her left arm elevated even more than we do, and the upper arm as well.
-Pull sheets under mom straight and flat to prevent bed sores
-Since we are so active with delivering mom's therapies, we should be part of the weekly team meetings that the facility has on mom
-Ask for a copy of mom's whole chart to peruse
-Ask whether TEDS stockings would help mom's circulation in her legs and left arm??? If so, these supportive stockings should be custom fit and measured according to the circumference of her thighs, calves, and ankles. Get them for the full leg.
-Vary mom's positions both in bed and on the chair every now and then---up, down, bent, straight, elevated...

I still intend to investigate the medications mom is on. I am wondering if it is possible that the dilantin mom is on as a seizure med may be contributing to her state of coma---ask if it can be decreased or discontinued for a while to see if there is a change

" ...wisdom is found in those who take advice." Proverbs 13:10

Mom Update, August 13, 2010, Friday

Mom had a really amazing day. She was really sleepy and out of it from 12-3 but then became more alert later in the day and evening, as well as early in the morning. She moved around --- her feet, ankles, toes, arms, fingers on right hand, head as usual. She moved her left leg again today---lifted it right off the chair foot rest!!! She followed directions to open her eyes, touch her head, mouth and nose. She said the following words in response to our asking her questions: "Yeah" "What" and she said "NO" several times too!! She even audibly said "OW!!" out loud...not just mouth it as she does the other words she says. Mom also opened her eyes a total of 44 times by the time I left at 7:30 p.m.---who knows how many more times she opened them? She was really, really trying to talk to Aunt Carol, Dad and I...making gutteral sounds and moving her mouth around...

Her day began with a visit from Claudia...then Anthony, Anthony Michael, Sam, and I came. Dad joined us around 12:30. At 2:30, Flo, Flo and Maureen came to celebrate her birthday---the birthday girls. Lenny, Con, Anthony, Sam, John, Ava, Dad, Aunt Carol, Terry, Claudia, Fay, and I all saw her from 4:30 on.

Fay, from mom's church choir, came to sing to mom as she always does. She brought a hymnal and she and Ava and I sang "The Prayer of St. Francis" "Eagle's Wings" and then Ava and Fay sang "The Servant's Song"....there wasn't a dry eye in the room...there we all were, gathered around her...singing as she moved her feet and arm and head...the nurse's aides even left the room in tears as well. It was a difficult day for us all but I know that we all felt the prayers of our family and friends. We thank you all for that.

I found an old e-mail from 2006 from mom...it was about the grandkids and it just tells so much about our family and mom:

Dear Kath:
I know you will understand the thoughts I've just had as I was doing some much neglected chores.
I was wiping fingerprints off the walls especially from the dining room to the living room, from the dining room to the kitchen, the refrigerator. You'll never believe this; but as I wiped them, I almost had tears---the lower ones belonged to Samantha and Anthony, mid-height to probably Ava, tall ones to Lenny and Jean. Of course most of them were there quite a long time, not only just yesterday. Although the prints weren't there that long, I remembered and pictured each child laboring to go down those steps into the living room, going into the refrigerator for a cool drink, or for a cucumber, an apple. I heard them playing outside. From now on, as I wipe fingerprints off the wall, I'll remember them, and I'll smile.
You won't believe this either; but the next time that Lenny and Ava are here (don't tell them), I'm going to take a picture of the two of them with the "arm pieces" to my blue side chair on their heads. Remember?
How lucky I am, Dad and I, to have our grandchildren so close and to be a small part of their lives.
Love,
Mom

We, too, are so lucky to have had, and still have mom in our lives too. It was a memorable 75th birthday...

"Her children stand and bless her. Her husband praises her: “There are many virtuous and capable women in the world, but you surpass them all!” Proverbs 31: 28-29

Mom Update, August 12, 2010, Thursday

MOM MOVED HER LEGS TODAY ON HER OWN FOR THE FIRST TIME IN 10 WEEKS!!!!!!!!!!!!! Claudia was doing physical therapy with her this morning and while working on mom's hands, mom began to move her feet and her legs right off the bed at the knee!!! The messages are being sent around her body---or so it seems!

The trach replacement yesterday was standard procedure that is done once every 2 months. No problems there that warranted the change.

Dad, Anthony, Anthony Michael and Samantha visited mom next today but only briefly because they were on their way to bring dad to the eye doctor. (Cataract surgery scheduled in the future; today was a check up). Donna came and worked with mom early in the afternoon today. Then Danny and Barbara came to see mom around 4 to sing an early Happy Birthday to her....

I saw mom from 4:20-7:20 p.m. and she was alert---kept opening her eyes consistently with some 5-10 second lapses in between for 45 minutes!!!! I did her physical therapy and IPOD music therapy (Chicago soundtrack and Best of the 40s)...she enjoyed the music as always. My friend, Sister Mary Ann, says she is sure that when mom wakes, she'll be singing!! I also noticed that the music brought mom's Tidal Volume on her vent up to 566 (once it remains at 600 for a while, she moves to the next level). Mom followed commands to touch her head, nose and mouth...but only once tonight. Dad and Claudia and I were with her tonight together and Claudia had mom using a small plastic bar to pull and push and give resistance in her right arm and hand. Mom did it! She also said, "Ow" and "What?" as well. She had her eyes open for 2 minutes and 15 seconds for us too!

It appears that, perhaps the noticeable change in mom's behavior since last Friday is due to her appearing to have moved from the fluid, dreamlike, womb-like world she has been in (perceptive coma state) to a more alert and conscious state of being. If this is so, then the sudden sleepiness and inactive, still state she lapses into makes sense, because any tasks she carries out are totally exhausting for her. I hope this is the case...I think it is. It gets lonely and difficult helping mom because we are the only ones who are doing anything for her---she gets no other therapies except respiratory therapy. And no one (doctors...) are around to give us a clue about how she is doing in reference to what we are doing with her. Feedback would be great occasionally...

Tomorrow is mom's 75th birthday....I miss her so much....please continue to keep us all in prayer. I'm having a hard night tonight.

"He makes the whole body fit together perfectly. As each part does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love." Ephesians 4:16

Mom Update, August 11, 2010, Wednesday

Reminder: Things to do when visiting mom:
-Read to her
-Talk to her (this is sometimes hard since she doesn't respond back---but she can hear you)
-Get the sensory bag from the armoire and rub the different textured items on her feet or arms or face or hand and then label the texture---soft, hard...
-Move her wrists, fingers (bend then open straight...)
-Sing to her
-Play music on her IPOD in the docking station (black)
ETC......
Anything you do with her HELPS!!!

Mom started her day with a visit from Claudia and they did her physical therapy, among other things. While doing mom's physical therapy, Claudia said that mom resisted pressure on her left arm!! She said she told mom to "PUSH, PUSH, PUSH against my hand!" and she DID so on command!! Claudia also said that mom's shoulder areas tremored while she did physical therapy on her legs---but when she checked with the physical therapist, she told Claudia that this was a good thing and meant that the brain is sending signals to her muscles to move voluntarily. Claudia was able to calm the tremor after 2 manipulations the physical therapist showed us.

When I arrived to visit mom in the afternoon, I met Suzanne in the parking lot---she was just leaving but decided to come back inside with me. She found mom to be sleepy and less active than last week too. I washed mom's face with cold water and talked to her, then I began her physical therapy. She winced when I worked on her left side arm, hand...her fingers are particularly stiff on that hand. When I got to her right side, she had opened her eyes slightly many times and 2 times widely. She also followed the commands to TOUCH YOUR HEAD, TOUCH YOUR NOSE, TOUCH YOUR MOUTH 3 times!!!! She did it for Suzanne once too! It takes her a very loooonnnngggg time to execute any command and she needs moments of silence between commands or repetitions in order to process what to do and what was said. She puts her whole body into following the commands too---very clever!! To touch her nose, for example, she will gradually and painfully slowly move her hand from the top of her head to her nose while turning her face to be closest to her hand!!

Ava, Sammy, Dad and Marty visited mom tonight. Ava and Sam did her physical therapy but they said she was very tired. The nurse said that many of her trachea parts were replaced between my visit and theirs. She had been coughing a lot these last 4 days.

When I returned to her tonight, she looked happy, good color, and peaceful. I always pray God's SHALOM over mom---which means health, wholeness, completeness, and full functionality, and peace. I tell her always about how much better God's peace is than the place she is in....

Her 75th birthday is in 2 days.....

And Gideon built an altar to the LORD there and named it Yahweh-Shalom (which means "the LORD is peace"). Judges 6:24

Mom Update, August 10, 2010, Tuesday

Anthony visited mom this morning and ran her physical therapy twice. He said she was really sleepy and quiet. Dad and Claudia saw mom next. Today, the recreation therapist brought mom, dad and Claudia to the recreation room to play drums for an hour!!! Claudia said that they tapped a tambourine and then some sticks, and then they banged a drum. Claudia did all this "hand over hand" with mom (she moved mom's hands through the motions). She said that dad really has a lot of rhythm!!! Mom was very sleepy through it all and when they three returned back to her room, they watched MASH together (one of mom's favorite shows) and discussed the show as it played. Dad, Con, Aunt Carol, Anthony Michael and Samantha saw mom tonight and did her physical therapy again. They said that mom opened her eyes widely for them when they first arrived but then went to sleep.

Her sugar level was high today in the morning --- 212 -- so she needed a dose of insulin. The medication nurse said this is typical until she fully wakes up and her body balances out. It was 96 when I was there, which is normal. I know I have mentioned that mom's movements have decreased in intensity and frequency since Friday. Her sugar level was high on Thursday night too and she needed insulin. She also had that respiratory issue where her vent had to be raised back up to 16. I wonder if any of this is related to her decrease in bodily movement??? I have a list of what she is given each day: Heparin, Cumadin, iron, lasix, Prilosec (acid reflux from G-Tube feeding), Zocore (for cholesterol), Labetalol (for high blood pressure), and Dialantin (for seizures---from hospital). I intend to look up the side effects to any of these drugs as well.

I came to see mom late in the afternoon. She looked sleepy then too, but I talked to her a lot and combed her hair, washed her face and began her physical therapy. She was coughing a lot during my visit, but the medication nurse said that this is a good thing---exercises her lungs and she is able to occasionally give a productive cough. An amazing thing happened while doing her therapy; as I lifted her right arm (her good one), I always end with a review of her face and head using her arm. What I do is take her by the elbow with one of my hands and then guide her by the wrist with my other hand and then move her hand to touch her head, cheek, nose, eyes, mouth, chin... As I move her hand to each part, I recite, "Touch your head... This is your head" etc. Today, when I finished this cognitive exercise, I asked mom to "Touch your head"... I told her to keep her hand flat and flattened it for her. Then, while holding her arm up at the elbow, I told her to, "Touch your head, mom. Come on, you can do it..." over and over again like a cheerleader--- AND SHE DID IT!!! She touched first her head, then her nose and then her mouth---with breaks in between and she did it 5 times!! She was so cute when she first touched her nose on command because she put this really concentrating face on---then slowly moved her hand to her nose and then, once there, she cupped her whole hand over her nose and opened her eyes wide with a look that seemed to question, "Did I do it??" I cheered her on over and over!! In total, while I was with her, she opened her eyes a little bit 8 times and then widely twice ( 1 minute 20 seconds and then 45 seconds). She was very alert still when I left to go home. I pray she is getting better each day.

"But forget all that--it is nothing compared to what I am going to do." Isaiah 43:18

Mom Update, August 9, 2010, Monday

Hello Everyone!
Thanks for all the prayers...keep them coming. Mom had a more alert day than she did over the weekend. Claudia and Jean visited with her this morning early...they did her physical therapy, tactile stimulation and sang to her. She opened her eyes 5 times for them!!! One of those times, Jean spoke to her and she appeared to answer him back, but Jean and Claudia didn't catch what she was saying. Later in the early afternoon, I visited mom and did her physical therapy, combed her hair, washed her face, massaged her legs and feet, and played 40s music on her IPOD.She moved her head, feet, ankles, wrists, and hands but not with the same stamina and frequency as before. She still seemed to be in that floating type of place in reference to her movements. I am beginning to wonder if the place she had been in up until last Friday (where she was fast moving and multi-moving, yet dreamlike cognitively) has shifted now that perhaps her brain has begun to rewire itself. This new place looks more typical---awake, asleep, rest...in an abrupt way as opposed to a fluid, subtle one?? I hope so. While I did her physical therapy this afternoon, I lifted her good arm--her right one---and she turned her head toward me quickly and wrinkled her face in an annoyed way and mouthed, "CAREFUL!!!" I laughed!!! I couldn't believe it!! I told her I WAS being careful. Donna came to do her therapies (physical, tactile, IPOD, and prayer) tonight. While she was visiting with mom, mom opened her eyes 4 times (45 secs each)...and one of those times, mom looked perplexed like, "What's going on here???" and Donna told her where she was and good she was doing and that she was with her and Donna said the look went away and changed to a peaceful one and mom went to sleep. When I saw mom this evening, she moved her feet a mile and minute while we prayed. I like to go tuck her in at night! Dad is going to the eye doctor on Thursday for cataracts so please keep him in prayer. The cleaning woman, a real sweetheart who loves mom and her roommate so much, came running into the room to tell me that mom had her eyes open for her and that she, the cleaning woman, cried to see that. Her night aide also said that mom said, "What" when she called her name and that she frequently opens her eyes for her too. Mom continues to make progress...PTL

"For still the vision awaits its appointed time..." Habakkuk 2:3

Mom Update, August 8, 2010, Sunday

Mom had a very quiet, still day again today...especially as the day went on. She also was coughing more than usual and needed to be suctioned more than usual as well. When I inquired with the nurse, she said that mom had a temp of 99.2 and they had given her tylenol. The nurse also said that she had spoken to the doctor and he wants to take blood from mom tomorrow to see how her white blood cell count is in order to rule out infection. Hopefully, mom will perk up tomorrow.

As I have been reading the book I mentioned, "My Stroke of Insight," I was struck by something in particular (among all else that I am impressed with in the book). The author, who is a brain scientist at Harvard and had a stroke herself, writes about how good it felt to slip into that coma-like or coma state...how peaceful a place it was...without what she called "brain chatter" and the stimulus from the outside world. She said that state of being really pulled at her and seduced her to want to slip further and further away from reality and deep into herself. What struck me about this passage as I read it was a memory I had of me and my friend praying with, and over, mom weeks and weeks ago. As we prayed, it was revealed to my friend through prayer that my mom was in such a place of euphoria (my friend didn't read the book nor does she know anything about the brain or strokes). As we prayed, my friend felt a resistance to waking up. At the time, I didn't understand what this meant...but now, in light of the book, it all makes sense. So some may say, "Gee mom is in a place of peace nso what's wrong with that?" and while she obviously seems to be in such a state, she doesn't need to stay in that place because such a state of peace can be acquired in our relationship with God. Weeks ago, long before we prayed over mom, this same friend felt that there was a specific scripture verse that kept coming to mind each time she prayed for mom. It was Jonah 1:6 "O sleeper, arise, and call upon your God." I was so blown away when I read about the brain during a stroke or bleed in reference to that place of euphoria and peace---especially in light of this scripture verse I've been praying since then for mom. And it all makes me remember that God supplies every need we have. Everything we need can be found in Him.

"And the peace of God that surpasses all understanding will guard your heart and mind in Christ Jesus" Philippians 4:7

Mom Update, August 7, 2010, Saturday

Today was our annual "Cousin's Picnic" --- a family tradition that has passed down in the generations for years now. Mom and Dad used to host some of these reunions at our house when we were little. Mom was missed by all. After breakfast, a bunch of the cousins piled into cars and went to visit mom. Angelo (the cousin who sang "Come meet the Mets" a few weeks ago to mom) was one of the cousins who came with us. Mom was more alert today than yesterday thank God. When I arrived there at 7:45 a.m., mom was moving much more than yesterday. When the clan of cousins arrived, mom moved around a lot and even opened her eyes a lot but mostly briefly---once for over a minute. We decided to play a CD that dad brought that had old songs on it like, "The Battle Hymn of the Republic," "America the Beautiful" and "My Darling Clementine" among others. As the music played, JoAnn, Dad, Anthony, Con, me, Madeline, Angelo, Anthony Michael and Samantha all sang the songs to her. As we happily belted out the tunes, mom moved around on the bed in the middle of our group. Angelo and dad pretended to play various instruments and Angelo offered to do a little soft shoe as well! These are the types of good times our family is used to having together---young and old alike. We miss mom.

Each person with mom each day contributes in some way to her well being. Anthony Michael loves to kiss mom (SHE KISSED HIS HAND TODAY!!) and to lay on the bed next to her and snuggle. Samantha, Lenny and Jean wrote beautiful letters to mom. Ava, Sam, Lenny and Anthony Michael do her physical therapy like pros by now....coaxing and encouraging her every step of the way. Samantha's text signature is "believe in miracles" surrounded by 2 hearts. Mom smiled a few times at Angelo singing "Come Meet the Mets" and many of us pledged various things when she wakes up. Dad got teary quite a few times today.

We all left for late lunch and then dad returned to see mom. He said she opened her eyes a lot for him! And when I went back to visit her at 9:00 p.m., she opened her eyes widely for 1 and 1/2 minutes and, though she seemed a bit confused, really looked at me as though she recognized me. Her nurse, who is doing a long weekend shift, said that mom's eyes were open a lot and widely for a long while around 4 p.m. She said that mom is also awake a lot at night too.

Many of the cousins remember mom fondly because she sang at the wedding masses of almost all of them.
A dear friend keeps telling me that "to sing is to pray twice" and that mom will likely wake up singing.... I hope that day is soon.

"...love your neighbor as yourself" Matthew 19:19

Mom Update, August 6, 2010, Friday

Mom had a really sleepy day today...I haven't seen her like this in weeks. For part of the day, about 2 hours, she just quietly slept and didn't even move at all. Anthony saw her early in the morning and said she was unresponsive and sleeping. Dad and Claudia were with her midday. While Claudia was doing physical therapy with her, she noticed that, every time she tried to move mom's right arm upward, mom's shoulder area would shake and tremble. Remember that her hands were trembling last weekend. Let me explain again how we do the physical therapy with mom before I continue. Weeks ago, when mom first arrived at the rehab center, one of the physical therapists gave me an 'in-service' mini training on how to do physical therapy with mom. I then taught everyone else. Basically, we start at either her feet or her hands. I start at her hands and work my way around her body. We take her fingers, one by one to a count of 10, and move each one individually. Each finger is straightened up as best as it can be (sometimes her right hand is curled) and we straighten each knuckle then take the finger and bend it up and down to a count of 10 (her toes are done the same way). Then we go back over each finger and bend it up and down at the knuckle to a count of 10. Her wrists are bent to 10 then rolled in a circle to 10. Then we bend her elbow up and down to 10. Then her arm is extended outward at the side to 10 at the shoulder and then lifted up over her head to 10, and then stretched across her body to have her hand touch her opposite shoulder. Each arm is done individually. Her ankles and knees are done the same way her wrists and elbows are. So...back to the trembling. Claudia asked the nurses about it and they could not attribute it to anything they were doing so they told her to go to the physical therapists. The physical therapist came to mom's room and evaluated the situation by manipulating her arms and elbows and shoulders. Then the therapist showed us how to work out any trembling at the shoulder. (I wrote down what she told us to do). The GOOD news is that the trembling is a GOOD thing!!! It means that there is a rewiring of the brain to the muscles that is going on. Her brain is giving her muscles the message to move due to the physical therapy we have been doing with her. We are sort of patterning her movement which is creating memory in the brain. Her brain is sending messages to her muscles to wake up and move...it is signaling her muscles. This is an awesome thing!! The therapist said that we are doing an awesome job with mom and to keep it up. We should be doing physical therapy (a form of passive movement) 3-4 times a day with her. And we should continue the coma stimulation via ice cubes in a plastic bag on her wrists, hands, under arms, face to stimulate her to wake up or follow a command. We should clap and speak loudly to wake her as well. Or place a small vibrator in her palm to make her follow a command and stimulate her.

When I was stretching mom's calf muscle around midday, she bent her knee and tried to push me away while she pulled away from me---very mild motion but it was there.

Mom then had many visitors today...Flo, Joan, Donna, Tom, Donna, Stevie, Tommy, Melissa, Madeline, and Nancy. Tom started to sing to mom and she did open her eyes briefly for us when he did that. Then, everyone stood around her bed and sang "Hello Dotty" to the tune of "Hello Dolly"...it was a poignant moment to see so many people there with her trying their best to wake her in such a loving way. Then, later in the early evening, Fay, from her choir, came to sing to her. Dad returned to be with her this evening and said she was really still very tired.

Mom held the trach line with her left hand today for a while!! Sneaky Pete that she is!! And all her movements were there...just not many at all...very few and in slow motion again...like floating under water.

I know these days of sleep and being "out of it" are part of the healing process and that they lead to a magnificent day later on...but I still hate them so. I have to focus on the positive though---her brain seems to be rewiring!!!

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up."
Galatians 6:9

Mom Update, August 5, 2010, Thursday

Mom didn't open her eyes today except for a little sliver a few times. But she touched her face with her right hand a lot and even scratched at her nose and rubbed her lips several times. Anthony visited with mom this morning and ran some therapies with her after I did. When dad and Claudia were with her today, dad was leaving and Claudia told her to say goodbye to dad---and it appeared that she raised her right hand and waved goodbye! She also had some resistance when I did her physical therapy today on her left arm. She continues to move her left hand, wrist, arm and fingers --- moving her whole left arm to the middle of her body frequently. Samantha said that she was sleepy but moved around a lot tonight when Sam, Anthony Michael, Con and Dad saw her. We are currently trying to spread out the physical therapies over 2 1/2 - 3 hour intervals and not give them back to back so mom doesn't get overtired. Overall though, it appears that what we are doing is working well. The therapies we are doing are called "coma stimulation" or "infant stimulation" - one in the same but different names. We found these therapies online, from our experiences and background in special education working with children with brain damage and trauma, and from the speech therapist at the center.

I spoke to the respiratory therapist today and he explained that the reason her vent was raised to 16 from 8 (in the area of number of breaths per minute that the machine gives to mom) is that her CO2 levels when she exhales went up. This is generally called respiratory distress and means any one of a number of things. In mom's case, there was no alarming explanation for this rise in CO2 levels. This term means any disturbance or change from the status quo. In such instances, there is the need to help balance out or compensate for the change in levels. He said that mom is currently quite comfortable at the 16 breaths per minute setting on the vent but that he has begun to decrease the setting down to 14 until Monday, when he will move it back down to 8 or 10. He said that mom needs to be challenged to breathe more on her own in order to wean off the vent altogether. He said that such a change in levels is not always a bad thing---it could be a good thing, in that, as mom's brain rewires, her levels go temporarily askew until they eventually balance out. I mentioned that mom's hands were trembling the day the level went to 16 and asked if the rise in the level could cause the trembling or if the trembling could be due to a seizure which made the CO2 levels rise. He said the 2 are just coincidental and unrelated events. He said her hands may have trembled due to recent reactivity in her left arm and hand---similar to a functional person who runs a mile then once stopped, the muscles in the legs are shaky and weak from exerting them---mom's hands may be doing the same thing from using them so much in new ways over the last few days. The respiratory therapist said that he has seen people of all ages, young and old, go from coma to alertness in a matter of days, or months. Some people remain in a coma a few months then suddenly make remarkable progress over the course of a few days while others make slow, steady progress over the course of a year or many months---both get to the same point of progress but at different speeds. It's all very individualized when it comes to the brain and how it works, rewires, and heals---and science still doesn't know much about the brain.

But...mom seems to be moving forward, and that's a good thing.

"I will give thanks to you because I have been so amazingly and miraculously made." Psalm 139:14

Mom Update, August 4, 2010, Wednesday

Mom moved around as usual today but not with the same momentum as Monday...sort of slow motion movement like under water again today. She likes to "hang on to" the trach line--- a sometimes dangerous thing to do (she pulled it off the trach hole attachment in her throat 2 xs! Scary!!!). No matter how much you try to get her to let go of the trach line or to not even grab for it in the first place, she does. She even began to "sneak" in order to grab it today!! While she held the small, red, plastic barbell that dad bought for her (we thought of placing something else in her hand instead of the trach line), she tried to grab the trach line anyway but with only 2 fingers!! My theory is that she holds it as a form of security, while dad thinks she doesn't like the trach and is trying to pull it out.

In any event, Ava reported that while she, dad, Aunt Carol, Jean and Lenny visited mom today, mom brought her right arm and hand to her left side while holding the red barbell and tried to open her right hand with her left hand in order to switch the barbell from one hand to the other!!! This is amazing motor planning in the works---which is great!

Claudia, Aunt Carol and I visited her again this evening and just hugged her, stroked her, talked to her, laughed with her---made her one of the girls as we gathered together around her bed...another memorable moment with mom.

I am sooooo tired tonight...keep the prayers going....thanks so much....love to all xxxooo Kath

"when you lie down, you will not be afraid; when you lie down, your sleep will be sweet." Proverbs 3:24

Mom Update, August 3, 2010, Tuesday

When JoAnn and I arrived to visit mom today, I saw that Sister Suzanne, John and Ava had been to see mom later on Monday. And today, Mom had Dad and Donna there, one on each side of her, doing her physical therapy. Also yesterday, I noticed by looking at the charts we keep on mom's therapies (that we do) that the Speech Therapist had been in to see her!!! She actually did therapy with her but wrote that mom was tired (and she was tired yesterday)....but she had an awesome day today!!!

Today, along with everything else mom usually does, she opened her eyes a lot (1 1/2 mins or so each time) BUT SHE MOVED HER LEFT ARM FROM HER SIDE TO HER STOMACH a few times!!!!! She also opened and closed her left hand!!!! And her feet were moving at such a quick and typical rate to the music she was listening to on her IPOD (Gypsy soundtrack)!!! I haven't seen her move her limbs so quickly since before this all happened. She is much more alert and many of the nurses are noticing it.

When Lenny came to see her tonight, she was tired and, when JoAnn and I came later, she was tired but alert to the sound of our voices... We noticed that the Volume of Air delivered through the vent went from 430s to the 590s and 600s every time I stroked her face. We left her peacefully sleeping and all set for the night.

"I am sleeping, but my heart is awake" Song of Solomon 5:2

I hope so.... xxxxooo

Mom Update, August 2, 2010, Monday

Some have asked me to identify the "players" in the Gilman family who I write about each day. Mom (Dotty) is married to Jean (dad) and they have 4 children Kathy (me), Terry, Anthony and Claudia (in age order). Kathy's son is Lenny. Claudia is married to John and their children are Jean and Ava. Anthony is married to Con and their children are Anthony Michael and Samantha (Sam, Sammy).

Mom was tired today. The woman who cleans mom's room commented again on how well mom looks and how alert and healthy. She said she just looks like she just isn't ready to fully wake up yet. Mom moved around as usual, but not as much. Dad, JoAnn and I visited with her and did her physical, aroma, and auditory therapies. I noticed that, over the last 2 or 3 days, her hands were shaking at one point during our visits. I asked the nurse about it and he is going to ask the doctor to look at her. Preliminarily, the nurse said it could be due to any one of a number of reasons...one of which could be the need to adjust her medication dosage (dilantin). Pray that this is nothing.

Also, JoAnn and I spoke to one of the respiratory therapists last night who told us that there are actually 3 levels of respiratory therapy before coming off the vent. Mom is still on level one but is doing well there. The general consensus is that she will eventually be off the vent, based on her CO2 levels and other levels they monitor (like how many breaths she takes on her own, how wide she expands her lungs when she breaths...). The vent that she is on provides her with air to her lungs through a specific pressure. Once in her lungs, mom then has to work to respirate---or mix the gases of oxygen with the gases of CO2 (passing one into the blood stream and expelling the other through exhales). It began to look like a lot of math to me---not my natural, God-given forte without the help and practice of a good teacher. The vent controls the air going into her lungs but allows her to breath on her own too. It also monitors the number of breaths per minute it gives to mom and how many she breaths alone, as well as the volume and pressure of air that is delivered into her lungs, her oxygen level, and the amount of air that is maintained in her lungs to keep them open. Basically, ventilation (the ventilator she is on) is the movement of air in the lungs. Respiration is the exchange of gases once the air is there in the lungs. Pray that mom continues to improve and breath on her own more each day or all at once.

Tonight, Dad, Aunt Carol (one of mom's best friends---they know each other 67 years!!), and Claudia visited mom. Claudia said that mom was alert tonight for a while and opened her eyes for 4 minutes and then 6 minutes!!! (She didn't open them at all during the day). But then, she became tired and sleepy.

I found myself again wishing that she wasn't so sleepy these last few days...but then I shift my focus off myself and back on her and remember that, right now, it's all about loving her and making as many minutes of the day be pleasant and productive for her because love is all about what can be done for another.

Keep praying...xxxooo
"Love...is not self-seeking...it always protects, always trusts, always hopes, always perseveres." 1 Corinthians 13:4-7

Mom Update, August 1, 2010, Sunday evening

Mom started her day with a visit from 2 of her dearest friends, Flo and Maureen. They reported that, when they sang to her, she looked right at Flo. She also opened her eyes a lot for them as well. They all enjoyed their visit together.

While dad, Anthony, Con, Anthony Michael, Samantha, Terry, JoAnn and I visited with her this afternoon, she opened her eyes many times and kept them open as long as 2 minutes. Along with her typical movements, she also said, "Ow" many times (unfortunately) during physical therapy on her left hand and fingers...and she said, "What" 3 times when dad called her name, and "Yeah" once in response to something dad asked her, and "Yup" when we talked about how she is getting better and better every day!

JoAnn and I went back to visit her tonight and she opened her eyes 2 times during that 1 1/2 (1 minute). Though she moved all the usual parts...she was tired---not worn out per se but she slept a lot and looked very content and peaceful as she did. She showed no response to aromatherapy (sleepy) and was most alert during physical therapy. She listened peacefully and quietly to her IPOD - soundtrack to Gypsy. Her manner today made me think of this scripture verse:

"Be still and know that I am God." Psalm 46:10

Keep praying....... xxxooo

Mom Update, July 31, 2010, Saturday evening

Anthony, Con, Anthony Michael, Sammy, Dad and Terry saw mom today during the morning and early afternoon. Mom opened her eyes a few times and moved her mouth, hands, arm, feet and ankles. One of the nurses told Anthony and dad that while she worked on Friday night and early Saturday morning (the middle of the night), she came in mom's room and mom's eyes were open---and she kept them open for 20 minutes!!!! The nurse clocked it. She also told them that there is an older man on the ward who had a stroke and was in a coma for 4 months and is now in rehab and awake and on the road to recovery!!

Uncle Ray (mom's brother) and his wife, Aunt Irene, came to see mom late this afternoon. Among the songs he said he sang to mom, he said she liked, "Let Me Call You Sweetheart" and "Are You Lonesome Tonight" the best. And that she opened her eyes when he sang these songs and stared right at him!

JoAnn and I went to see mom really late tonight after Jean's play (around 11:20 p.m.) and she was sleeping but turned to our voices and held our hands for a while too. We decided to let her sleep, so we just sat quietly with her. She moved her feet and right arm while she slept and she looked sort of pensive as she slept. At one point, she startled in her sleep---I wonder if it was that dream where you are falling?

"For he will give you into the care of his angels to keep you wherever you go." Psalm 91:11