Jana's Summary of Days

Monday May 9^th

Summary by Jana:

3:00pm: unconscious

7:00pm: lucid – went home to Dale’s

-dazed, deep sleep

Tuesday May 10^th

Summariazed by Jana:

Wouldn’t wake up.

 – Hospital –

- Hallucinations: “I’m dying”

 - ICU

7:30pm: blessing

8:00pm: woke briefly

Midnight: semi-conscious

Wednesday May 11^th

Summary: - Jana’s voice:

1:00am – awake and lucid

3-5am: normal conversations. kept asking for bedpan and vomit bucket.

4:25am: bowel movement

7:30am: full breakfast

-Drs. In and out all day. Stressful possible prognosis

Noon: full lunch (still acting a little abnormal – dementia-like)

5:00pm: 500mg Levetiracetam (generic Keppra) - 1^st dose

-ate dinner

-family visited

9-10pm: Dr. Shoari (neurologist) visit and evaluation. Mom’s memory was amazing! Not Dementia!

 Diagnosis: Seizures.

9pm: 500mg Levetiracetam

10-11pm: She sat up and looked at me w/ scared eyes, twice.

1:00am: moved upstairs (out of ICU) – no response. Hospital staff thought she was just  sound asleep.

Thursday May 12^th

Summary  (by Jana):

8am: nurse tried to wake her. No response.

2ish: Mom woke Dad. Told Dad she couldn’t talk more, cause she was “dead.” (Really worried Dad)

3-? : Mom started responding while still “asleep;” 1^st w/ nods, then verbally (repetitively)

-bicycling, arm movements

 

Friday and Saturday May 13th and 14th

Friday, May 13:

2am: sat up, ripped out IV. Talked coherently, about terrifying dreams. “I thought I was dead.”

4-5am: in and out of sleep

5:30am asked for breakfast, but didn’t eat crackers that were brought.

-I asked for one-to-one care. An aide was “ordered” and would come so I could leave.

5:45am: looking much better. Wanting to go home

6:15: was happy to see Michael. Acted almost normal.

-ate breakfast and was dressed by the time Dale & Dad got there around 8am.

-went home.

-Denis said she started acting weird again that night.

Saturday, May 14:

-awoke briefly;  250mg Levetiracetam

-back into “coma”

8am: Dale took over care, began to research home health care to avoid returning to hospital

2ish: Mom went to bathroom

-active sleep all day and night.

Sunday May 15^th  250 mgs keppra sun 7 am and 500 mgs at 4 p.m.

Summary:

2:30am: bathroom; drank 8oz.

4ish: bathroom

6ish: woke, bathroom, rested

7ish am: 8oz water, breakfast, OJ, 250mg Levetiracetam, soda

Monday May 16th

Summary:

6:30am – 500mg Levetiracetam

6:45am – trance

7:45 – bicycling stage

10:30am – awake

3:00pm – tremor, fell asleep on floor, bicycling right away

5:00pm – woke, Levetiracetam: back to bicycling

10pm – quit bicycling, relaxed sleep, carried to bed, bathroom

11:30pm - awoke

Tuesday Morning May  17th

Summary by Jana

6:30am: 500mg Levetiracetam

5:30pm: 500mg Levetiracetam

6pm: dinner

6:30pm: grumpy, sat down, quiet

7pm: started seizure

10pm: was in active sleep when I got there

10:50pm: Mom woke up, “Jana, I’m back!” ½ glass water

11pm: went back to bed

Wednesday May 18^th -  Jana all day

5:30am: I heard Mom and Dad briefly talking.

7:00am: 500 mg. Levetiracetam (Generic Keppra)

8:00am: Dad “made” breakfast – cold cereal

8:20am: dazed in chair. I walked her to bed. Immediate deep sleep

8:30am: Active sleep. Legs “step”, right arm keeps two count rhythm, left hand picks left, then right ear.

3:40pm: bathroom, then still sleep on her side

5:00pm: up and lucid – 500mg Levetiracetam, 1 stool softener, 3 glasses water

 - sitting up in bed and lucid but very tired. She wanted to schedule the day.

6:00pm:  Breakfast. I couldn’t convince her it wasn’t morning. She ate waffles.

-normal all evening

-Dr. Shoari told Dale to increase “Keppra”  gradually to 750mg

10:00pm: Mom went to bed because I was tired.

Thursday, May 19, 2011 – Jana

7:05am: I woke Mom and gave her  562mg Levetiracetam, water and two bites muffin

7:00am: Mom came from bedroom and knew what day it is.

-Awesome, normal hour: Mom helped Dad make breakfast

8:00am: drowsy – nap.

11:00am: Mom’s hand became very shaky, she touched her fingers with her thumb on left hand. (Something she does in deep sleep). Began to circle right hand.

11:01am: definitely deep sleep. Circling motion w/ right hand, touching hair w/ left finger

12:05pm: she was trying to talk to me. I could not understand.

12:16pm: again tried to speak, body calmed movements slowed

12:19pm: started kicking rt. Leg and moving whole body again

12:27pm: said, “atonement”, pulled off covers

1:20pm: woke. “Boy am I worn out. I was riding a bicycle a whole time.”

-she said she was saying “hospital” when I couldn’t understand her – because she was “sick”

-she remembered eating Zoom for breakfast.

1:30: sat quietly on couch, watching TV

2:30: started to doze, Dad talked and woke her.

   

  

ray photo 2009 Photo of the Day

One of Ray's photos taken in 2009

Jana Notes May 18th 2011

Wed.5/18/11
Mom's back in her own little world. She came to reality last night around 10:50pm when she emerged from the bedroom saying "Hi Jana, I'm back!" She had that proud of herself tone in her voice.
She went into the daze again right after breakfast this morning while sitting at the table. I walked her to her bed where she went directly into non-responsive sleep. Ten minutes later she was in active sleep and still is 3 1/2 hours later. Yesterday's seizure was only 4 hrs. We'll see how today goes.
I would like to eventually place photos, etc on the blog, and I really think Mom would appreciate privacy. I would hate for just anyone to google any of the many words that we will use and come up with Mom's personal data. That's why I don't do facebook, etc, because I like my privacy.
just something to think about.
love you all. Thanks for everything.

Dales 2nd Entry May 17-18

Tuesday Morning May  17th

She lay down and Dad came in and wanted to lie down beside her at about 1:30A.M. They then both went back to bed and she woke up again at 4. She went to the bathroom and then returned to bed until

about  6:30 A.M. Denis had her take two 250 mg Keppra pills. Erin came at 7 A.M. and stayed until the afternoon until MaryAnn came.  MaryAnn stayed untilLezlee, Nicole and Carli came at about 4 or 5. They got her meds in her and she stayed lucid until about 7 and had a seizure. She went into a psychosis about 7 and stayed asleep doing bicycle the whole time. Jana came about 9:30. She woke way earlier than expected at 11 and was lucid but went back to bed. Nightime activity is unrecorded.

Wednesday May 18th Jana all day

7:00 a.m.Keppra

8:00 breakfast

8:20 dazed then deep sleep

8:30 bicycles all day

3:40 bathroom, then lighter sleep

5:30 up and lucid

6:30 sitting up in bed and lucid but very tired.

Mom’s Seizure Journal

May 14, 2011

Dale’s Recollection

Monday May 9^th

Ray and Joan Longhurst were staying at Alan and Laura Longhurst’s ( a son and daughter in law)  home over the Mother’s day weekend. Joan had been having what seemed like dementia over the last few weeks . She had been often confused about dates and was displaying sudden bouts of memory loss. She was also complaining about headaches possibly related to a sinus infection she thought she might have. She had been in to see Dr. John Luras on Monday and had an MRI on Friday.  We were still awaiting the results when on Monday afternoon about 3 P.M., she fainted and they ( Alan and Laura) could not wake her. She had fainted a few times earlier (in the previous week or weeks). They took her to the emergency room at Alta View Hospital where they monitored her and gave her IV fluids. At approximately   7  P.M., she awoke and was very lucid. They released her from the hospital and she came home with Dale and MaryAnn Longhurst  (another son and daughter in law.) After having some dinner, she again became confused and stood up from the table, walked into the corner of the living room and was asked if she was alright. She said no, and looked very confused. She then walked over to the couch and after lying down, pulled a blanket over her head and, clutching it tightly, fell asleep.

Tuesday May 10th

 She may have gotten up to go to the bathroom in the night, but in the morning she would not wake up. Dale then carried her to the car and brought her to the emergency room at Salt lake Regional Hospital after conferring with her doctor on the phone. She was admitted, and would not respond to pain or several other types of stimuli. Within a few hours they moved her to the ICU and we all waited for her to wake up. Several times she started hallucinating and started talking about loved ones who had passed away and said over and over “I am dying, I am dying”. This was in the morning before being given a room in the ICU. She was given a priesthood blessing by her two sons Dale and Denis and her husband, Ray at about 7:30.  She stayed asleep or in a deep state of unconsciousness until approximately 8 P.M. She woke briefly , and spoke of her hallucinations, saying she had an out of body experience in which she hovered above the bed.  Her daughter, Jana flew in from Illinois and arrived at the hospital shortly after  1 A.M. Dale then took Ray home for the night.

Wednesday May 11^th

With Jana at her side, she woke and became extremely lucid for most of the remainder of the night.

They spoke about many things for several hours and enjoyed each other’s company. She stayed lucid all night long and into the next day. The doctors wrote on the board that it might be Lewy Body Dementia.

We spent much of the day studying and learning about it. Dr. Luras was not so sure. He wanted to see the EEG. The EEG was administered while Denis was there and he thought she had a couple of seizures while they were doing the EEG.   I don’t recall when she went back into her new round of psychosis.  I think it was sometime in the afternoon  - possibly about 3 P.M. They administered 1000 mg of Keppra to her hoping it would stop the seizures. She stayed asleep for the rest of Wednesday afternoon, into the evening and through the entire night.

^{Thursday May 12th}

^{She stayed asleep all day until 1 A.M. on Friday Morning. Dale and Jana went shopping Thursday afternoon. Ray slept in a chair next to her and did not go home for a nap. He was excited when she woke and squeezed his arm to wake him up and talk for a brief minute. He was excited that she woke him up and talked for a minute before falling asleep again. She stayed asleep for the rest of the evening and woke in the middle of the night. It appears she is sleeping for about 24 to 36 hours and staying awake approx 24 hours. Bicycle type movements seem to happen about half way through the heavy sleep. As she nears consciousness, she is able to go to the bathroom, though still in a trance like state. She also responds to questions with a nod of the head. I believe the nurse gave her 250 mg twice that day. Check with the hospital or with Jana.}

^{Friday and Saturday May 13th and 14th 250 mgs twice on Friday and once Sat morning}

^{She woke up shortly after midnight again and was lucid for 36 hours. She did not fall asleep again until Saturday morning about 8 o’ clock. Denis was with her and witnessed the seizure. She became irritated and answered questions curtly with one word answers. She then convulsed a little and laid down on the couch and slept for almost exactly 24 hours. She displayed bicycle and shadow boxing movements, air piano and hitting her head with her hands, at about hour numbers 8 ( 3 o’ clock) through about 16 ( 11 p.m. or so). She went to the bathroom while still in a trance at least twice during the night.}   

^{Sunday May 15th 250 mgs keppra sun 7 am and 500 mgs at 4 p.m.}

^{She woke up and was completely lucid about 6 A.M. She still showed symptoms of memory loss and confusion but in a very aware and normal state. She stayed awake all day. The next expected seizure should be  about 7 a.m. tomorrow unless the meds start working. Next  planned meds at 6 a.m on Monday morning 500 mg.}

^{Monday May 16th A different day but somewhat the same. The day started with much promise the meds were making a difference. She slept pretty well all night  without an apparent seizure or deep sleepd  Dale woke her at about 6:30 A.M. She was lucid. He was hoping to get her to take 500 mg before another seizure came. It was a close one. She took the two pills at 6:30 and was in another trance by 6:45. She did not even get breakfast. There was a big difference this time, however. The bicycling stage started within an hour after the seizure started and she was awake again by 10:30. She was lucid again and stayed awake until 3 o clock. She then had another tremor and fell asleep again doing bicycle movements right away. She stayed asleep until 5 when Ray came home from a doctor’s appointment. She woke up, said hi, took a pill and went back into the bicycle stage right away. It is 8:30 P.M. and she is still riding, but like she just finished a marathon, a little more subdued.}