Isabel the Brave!

A few weeks ago, a friend of Isabel's sent her a new CD titled "Scotland the Brave". Mum listens to this collection of Scottish pipe and drum classics nearly every day. Everyone on the Respiratory Unit of Regina General Hospital knows that Mum has Scottish blood and loves the "skirl of the pipes".

In these November days of diminishing light and lengthening nights, we are so aware that Mum is "Isabel the Brave". Mum is so utterly determined to do whatever she can to regain whatever health is possible for her at this time.

On September 25, we posted Mum's diagnosis from her neurologist -- encephalitis, meningitis, and myelitis - with a primary diagnosis of myelitis -- the rarest and most devastating of the West Nile Virus Neurological Syndrome conditions. The neurologist expected very very slow improvement in Mum's condition, and that is what we are seeing -- very very slow improvement. Mum experiences both flaccidity (limpness) and spasticity (rigidity) in her body. She continues in daily physiotherapy to regain her range of motion and flexibility. Mum has regained very little core strength so she must be moved from bed to chair by her physiotherapists or by a mechanical lift. HOWEVER, she is able to sit in her wheelchair for three hours a day. This is improvement. This IS progress!

Mum continues to very slowly wean herself from the respirator and now averages 10 hours a day where she is off the respiratory and uses a mask over the trach in her throat to breathe. The mask provides her with slightly more oxygen and humidity than is in room air. It is heartening to walk into Mum's room and see the respirator turned off -- no flashing lights and beeps!

The process of weaning plus recovery from the virus is exhausting. Some days, Mum sleeps soundly for most of the day. On those days, we need to believe in the healing power of sleep. On other days, Mum is awake for much of the day. Her nights and sleep patterns also vary and we are thankful for the company of varied CDs, CBC radio, and attentive nurses who work a 2-1 (patient-nurse) ratio.

Each day is unpredictable. Will this be an awake day or a sleepy day? We never know. When Mum is awake, she is alert and delights in mail, phone calls, visitors, news of Agribition (Canada's huge agricultural show held every November in Regina), and those Grey Cup-winning Saskatchewan Roughriders!

It continues to feel like a miracle that when Mum is awake and alert she appears to remember everything and everyone she has ever known. Communication continues to be a huge challenge as Mum has so much to say to us and does not have the ability to whisper or speak out-loud, although she is mouthing words on a regular basis. We are all working to try to mouth-read. Mum does use the letter-board and often spells out complex thoughts. However, even using the letter-board can be exhausting.

This past week as we discussed the upcoming holiday season, Mum used the letter-board to ask how she would receive her Christmas mail. We reassured her that the Pony Express from Abernethy Post Office continues to work very well!

The third verse of the song, "Scotland the Brave" goes like this:

High in the misty mountains
Out by the purple highlands
Brave are the hearts that beat beneath Scottish skies
Wild are the winds to meet you
Staunch are the friends that greet you
Kind as the love that shines from fair maidens' eyes.

The word "staunch" has come to mean "steadfast in loyalty".

Thank you for being those kind staunch family, friends, and community who are supporting Mum and us during these short days and long nights,

Janet, Nancy, and Catherine

"I've Survived Damn Near Everything"

A year or so ago, a friend of Mum's gave her a lapel button that says:

I'VE SURVIVED DAMN NEAR EVERYTHING!

We found it last week in Mum's jewellery box in the midst of her
Celtic pins, clan brooches, pearls, and Christmas baubles. The button
is now on Mum's bulletin board in her hospital room, and she has worn
it on her "sitting up" clothes.

On the day of Regina's first snow, Janet and Catherine wheeled Isabel
to the window to see all the white on the top of Regina houses. Mum
knows very well that it is mid-November, but the sight of all the
white brings a visual reality to us all as we consider Mum's long
stay in hospital. After Mum went back to bed, she asked for her
letter board.

She spelled out RED TOPS. Mum is weary of blue and green fleece
jackets and is looking for more colour in her life! AND the holiday
season is approaching! So Mum now has new red sweaters and earrings
to cheer us all. On Sunday, Mum asked for her lipstick before two
old friends arrived to share tales about Gillespie (our rural school
district) and Shorthorn (cattle) Events.

As Nancy says, "Some days Mum keeps US going!"

It's rather like being handed HOPE on a platter.

Isabel's Social Calendar

With each passing week, Mum is increasingly enjoying visitors and
phone calls.

Catherine has agreed to be her Social Co-ordinator. (She thinks it
will look good on her resume!).

In order to pace visitors with Mum's schedule of nursing care, rest,
and therapies, we are asking that you be in touch with Catherine
before planning to visit. You can reach her by email at:
catherine.barnsley@usask.ca OR 306-270-6394. We can then share some
ideas with you about your visit with Mum.

You may also wish to leave a short phone message for Isabel on her
home answering service. 306-333-4805. We can access Mum's messages
from her hospital room so she can hear your voice and good wishes.

Mum's condition continues to be vulnerable, however, we are thankful
for the continuing pleasure that she takes in her broad community who
is holding us all in care and prayer.

Nancy, Janet, and Catherine

Grand Central Station

Dear Family and Friends

Isabel did get to vote on Day 2 of eight hours a day OFF the
respirator! Day 2 has now turned into Day 6.

"That's one third of the day! That's one third of Isabel's
marathon!" declared the niece of another West Nile Virus Neurological
Syndrome survivor.

It has been a good week. Although Isabel continues to cope with
constant neurological fatigue, her desire to be socially active
increases weekly.

Friday was such a day. The afternoon began with a visit from two
Abernethy friends who spent 15 minutes telling Mum news from her home
community.

Just before 2:00, two cousins arrived bearing a variety pack of home-
baking "For Isabel's caregivers" and two hand knitted exercise balls
for Mum's hands. As the cousins prepared to come into see her, Mum's
two physiotherapists and social worker arrived to give Isabel and her
family a half hour coaching session of Mum's new physio/occupational
therapy plan. As we have said before, Mum has a dynamo physio team.
Mum was sitting up in bed and her lead physio plopped down on the bed
beside Mum to talk about the plan. The cheers and chatter were
constant as members of Isabel's family were put through the drill.
Mum's letter-board was brought out and she contributed her own
questions about her therapy.

At one point in this session, a respiratory therapist stuck his head
in the door to add his cheers for Mum's progress. A passer-by nurse
inquired if this was the cheerleader practice for the Riders' big
game on Sunday.

In the meantime, ward staff from nurses to respiratory specialists to
housekeepers came by to taste the home-baking. When the cheering
squad left with mouths full of baking, Isabel's cousins came in to
share news of extended family activities.

Amid the huge compromises to Isabel's physical health, we continue
to be so thankful that Mum's cognitive ability, delight in
socializing and hearing news, and warm greetings to people as they
come through her door are in no way diminished! This in itself is a
miracle!

Your messages of good wishes and news continue to be bright spots in
every day.

THANK YOU! THANK YOU! THANK YOU!

GO RIDERS GO!

Catherine, Nancy, and Janet

Exercising One's Civic Duty

Hello Family and Friends

When Mum wants to tell us or ask us something, we frequently need to
present a verbal list of possible topics before we discover the
"general area" of conversation that Mum wishes to have with us.

During time identifying discussion topics on Saturday, Catherine was
perplexed about the keen interest that Mum had in a particular topic
that did not fit the usual categories of health care, communication,
family, friends, community events, and things that Isabel wants her
daughters to do (also known as "orders").

Mum finally rolled her eyes, motioned to the letter-board and rapidly
spelled out "vote". She and Catherine then had a 15 minute
"conversation" about events leading up to the Saskatchewan provincial
election this week. Catherine was not up to speed on all of
Isabel's questions including the names and positions of all the
candidates in the riding where Isabel lives. We might have to count
on a son-in-law for that analysis!

One of Isabel's doctors came during that discussion, and Catherine
suggested that this was a good time for Isabel to teach him the
letter-board. He declined claiming possible political pressure placed
on him by a patient. Perhaps next week he will agree to be one of
Isabel's students! As he left, he reminded Isabel that she did have
the right to vote and she nodded enthusiastically.

Here's a toast to Isabel and her keen interest in civic and community
issues -- and educating others!

Mum has had another steady week of 6 hours off the respirator each
day. Slow but steady goes this marathon.

Nancy, Janet, and Catherine