The West Nile Ride

Thursday evening, August 30

Dear Family and Friends

Greetings from the city -- and the country -- 

This posting has four parts:

1. Brief Update

2. No visitors please

3. How to Send Communication to Mum and Us

4. "The Ride"

***************************

Brief Update 

Mum continues to be a resident in a critical care unit at Regina General Hospital.  She has a lovely private room with a terrific view of the trees and parks of Regina, looking far out to the prairie harvest.  Mum is conscious and is able to maintain focus for a short time to hear messages and harvest reports.  She is usually acutely aware of what is going on around her, and we keep reminding the staff who come into her room and speak to us ABOUT Mum that they had best address ISABEL as she is hearing every word!

Mum cannot speak or swallow.  She requires a respirator to breathe. She communicates through facial expressions and hand squeezes. Mum has a huge medical team working with her -- doctors, nurses, physiotherapists, respiratory therapists, and a speech therapist.  She is very very determined which gives us great hope.  This will not be a surprise to those of you that know her as friend, aunt, cousin, teacher, athlete, or committee member!  West-Nile has greatly compromised her body.  However, yesterday her four physio-therapists and her nurses gave loud cheers at the progress she was making to recover some movement and some breathing ability.  

Mum has a very long road ahead of her.  Her days are two-steps-forward-one-step-back.  We continue to live in hope as she has shown us her powerful determination. She is clearly in charge of her program!

No visitors please

Thank you to all who have asked if you can visit, bring gifts, or provide respite to us in our support of Mum.   We very much appreciate your offers.  We are calling on medical members of our extended family to be with Mum in afternoons so that one of us does not have to be there every day.  However, we continue to request that at this time you do not visit Mum.  That is her wish, and ours. She is getting stimulation from a variety of health care providers and she is in various therapies throughout the day.  Thanks for understanding and spreading the word.

How to Send Communication to Mum and Us

There are four ways:

1. By Canada Post to: Box 190, Abernethy, SK SOA OAO.  Please do not send cards to the hospital.

2. By e-mail to Catherine at: catherine.barnsley@usask.ca

3. By fax to: the Garratt Seed Farm at: 306-333-4833. 

4. By leaving a phone message at Mum's home: 306-333-4805.

We will pass on each message.  Regretfully, we are not able to reply to phone calls and e-mails at this time.

"The Ride"

Mum's room has huge white walls that are now filled with photos, and posters made by her grand-kids and young friends.  Christmas card strings hold your many cards.  A bright purple binder covered with stickers holds your e-mails.  Her CD player and favourite CDs are by her bedside.  

Isabel is one determined woman, and we are ALL along for the ride. Thank YOU for joining us with your greetings and prayers.  As her daughters, we continue to be in awe at the outpouring of messages that have come to Mum from every chapter of her life. We can only guess at what Mum is thinking.  However, we have always known that family, friends, and community are the most significant treasures in the world to her so your communication is very important to her -- and us.

It's a beautiful late summer harvest evening...  Full moon;  suppers in the field;  tomatoes on the vine, corn on the cob;  late night combining......and gratitude that we can continue to update you on Mum's health in a hopeful way.

Catherine, Janet and Nancy

Monday evening update

Hello Family and Friends

This is a late Monday evening update.

Mom's surgeries for the tracheotomy and feeding tube went well. Her condition is stable.  

Mum continues to require a ventilator to breathe.  She is conscious, and responding to questions but unable to speak.  Mum communicates through eye movements and nods.

The medical staff do not know the long-term implications of the West Nile virus for Mum nor for the other patients with similar neurological symptoms.  We all move one day at a time.

Mum is not receiving any visitors other than immediate family at this time.  However, we continue to appreciate each one of your messages.  We read Mum the cards and e-mail messages.  Mum listens attentively.  Your messages remind us of how life goes on around us in the midst of this very focussed time in our lives.

We regret that we cannot respond personally to the many e-mail and phone messages that we receive.  Thank you all for your ongoing care and prayers.

Nancy, Janet and Catherine

The West Nile Road

Friday, August 24

Dear Family and Friends

It is two weeks today since Mum was admitted to hospital.

We are writing to update you on her condition.

Her health was stable enough on Thursday to have surgery for a tracheostomy. Her ICU Doctor encouraged this procedure to reduce the chance of infection and increase her comfort as she requires a respirator to breathe. She is awaiting surgery for a tube into her stomach for feeding purposes. Both these procedures are reversible when she gains strength to breathe and swallow on her own. We hope that this will be possible in the near future. At this time, the extent of the permanent neurological damage to her respiratory system is unknown. Mum will remain in ICU while she stablizes from Thursday's surgery.

We want to keep you up-to-date as much as possible. Mum is hanging in -- determined, couragous, and working so hard at the tasks that we and the supurb medical staff ask her to do to help increase her movement and communication.

Mum -- and all of us -- continue to be sustained by your many greetings of support. Mum had her glasses on Thursday and was able to appreciate your beautiful cards as we held them for her to see.

Thank you all again for your many many messages, and for holding us all in your care these last two weeks.

We will likely not update the blog again until early next week unless there is a change in Mum's condition. However, each day we will continue to read to Mum and tell her about your care.

Janet, Nancy, and Catherine

Hanging In and Hanging Out

Wednesday evening, Aug 22

HANGING IN: We are all hanging in -- especially Mum whose indomitable spirit shines through during these hard days. Mum is so brave and full of determination. Tuesday was a big day -- emotionally and physically as my sisters and I shared your greetings, watched her eye and facial responses to the questions of medical staff and us, and worked with her to do gentle physio movements. She is understanding our communication and yours, and much of what is going on around her. She has lots of alert times and lots of sleepy times.

HANGING OUT: Rick and I have been at the ICU many hours since noon on Tuesday, and will be there until noon on Thursday. We have hung out a lot in the Visitors' Room where one of the supportive and unexpected bonuses of our hours in the ICU has been hanging out with other families whose loved ones are exhibiting symptoms similar to Mum, but who are still waiting for test results to confirm West Nile. We exchange symptoms and internet sites, discuss medical care, and Saskatchewan locales. My parents always made friends while in the hospital. It feels as if we are keeping up the tradition as we exchange phone numbers and e-mail addresses to keep in touch about the outcome of this vicious virus.

Again -- we are so appreciative of your e-mails, cards and faxes and we read them all to Mum several times. Stories of your work days in various places, canning peaches, hours of quilting, harvest yields, travel, summer holidays, new school supplies, and what's happening at the Abernethy Coop -- and so much more -- help the time go more quickly and provide needed stimulation for Mum.

Mary and Josh are creating a big purple binder covered with stickers to hold all the messages. I suggested to them that a binder with a good collection of cat, dog, flower, and Spiderman stickers would be just what we need to hold your words of strength, prayer and community for Mum.

We ask if you are sending cards to address them to: Box 190, Abernethy, SK S0A 0A0 rather than the hospital. And if any of you can send some sunshiny dry days to the Canadian prairies, please do that, too!

Thank you!
Catherine

A Room with a View

Hello Family and Friends

It is noon on Monday.

Mum continues to be intensive care with 1-on-1 nursing care. She has some periods where she intently focusses her listening. We know that she is hearing much of what goes on around her so we continue to reassure her and read your many messages.

Her condition continues to be very critical, and we continue to live one day at a time. Yesterday, Mum was moved to "a room with a view" so she has a larger room and a big window. We know that this is very important so that she can be aware of day and night. Now if that sun would come out and brighten up three-day-sodden-Saskatchewan, we would all be pleased. Harvest has ground to a halt with heavy rain during each of the last three days.

We continue to be moved by the outpouring of phone calls and e-mails and cards. We know that Mum has a vast community, but we had no idea of her influence. As a family, we are sustained by your kind notes and your story-telling of your days, and your experiences of how Mum has influenced your lives as a friend, cousin, aunt, teacher, and community volunteer. Reading your words helps these long days. Some of you are writing every day; some of you have written once or twice. Each type of message is so important to us.

Some of you want to send faxes. You can do so to Nancy and Bill's at: 306-333-4833. There is no need to do a cover page as the fax will come to the Garratt seed plant.

Some of you have asked about sending flowers or visiting Mum. Intensive Care is an acute care ward that has many people with a variety of critical illnesses. The hospital does not allow flowers nor does it allow visitors other than immediate family. Your prayers and messages are what are important now.

We ask for your continued prayers for courage and peace-of-mind for Mum; for strength and courage for us all, and for wisdom and compassion for the medical staff who are treating her.

Thank you again,
Catherine

Saturday Evening

Hello Family and Friends

It is late Saturday evening and this is a short note. We are so grateful for the many many messages that continue to flow in and sustain Mum and all of us as we support her.

Mum is having more alert periods of listening so we read many notes to her today. We love sharing your stories of harvest, family activities, work and leisure.

Her situation continues to be very very serious, and we value your support is helping her and us one day at a time. Please keep your greetings coming. It may not be possible for us to post a message each day, however,we will update the weblog as we know more.

We ask for your continued prayers that Mum might know how she is held and loved in community as she continues to find the strength to heal.

Thank you again,

Catherine

Friday evening Update

Friday evening, August 17

Dear Family and Friends

Once again, Mum has made a very slight improvement today.  Nancy was with her a good part of the day, and Bill and Megan and John joined her late in the afternoon.  Nancy read out-loud several of the many cards and e-mails that have been sent to Mum.  Nancy knows that Mum could hear as she showed some expression in her face as Nancy read messages to her from different people.  

Earlier in the day, Megan and John set up shop at home near Abernethy and burned a number of CDs with Mum's favourite Scottish and spiritual music to take to their Grannie's room.  They also printed many many e-mails of good wishes that I had forwarded to them.  Love those teens and their technology!

Mum continues to be in a coma in the Intensive Care Unit at Regina General.  She is coming out of the coma a little more each day.  

As you know from yesterday's posting, Mum has been diagnosed with a meningitis, and in particular, meningo-encephalitis.  Meningitis is the inflammation of the protective membranes covering the central nervous system. Encephalitis is an acute inflammation of the brain, commonly caused by a viral infection. 

Today, it was confirmed from the results of a blood test that the particular virus that has infected Mum is West Nile.  She was bitten by an infected mosquito. In Mum's particular case, the infection had a dramatic effect on her neurological system and has led to the meningo-encephalitis.

As a family we have suspected West Nile all week, however at least one of her presenting symptoms did not indicate that particular virus.  In addition, her CSF (Cerebral Spinal Fluid) test showed negative.  We do know however that this CSF test can be inconclusive, and today the results of the blood tests proved that the infection was the result of West Nile.

At this time, we do not know what this means for Mum's long-term recovery.  We know that she has a very long road ahead of her.  We also know that she is one of the most spirited and determined people we know as she has fought her way back to excellent health after other serious illnesses including two cancers.

Many of you have expressed deep shock (as have we) that someone who is so fit and active could be stricken so ill so fast.  You have also inquired (as have we) about whether her fitness level (as the result of cross-country skiing, skating, walking, and gardening) will help her through this difficult time.  Her physical fitness will not help her neurological condition, however we do know that her level of fitness is the result of her previous fierce determination to recover her health and stay healthy from other illnesses.  May it be so again!

Those of us that live on the Canadian prairies know that West Nile is rampant this August.  More cases are being confirmed every day, and Mum is one of six acute neurological cases in Saskatchewan. West Nile is NOT contagious between humans. We also know that very very few people who develop West Nile are as seriously affected as Mum.  Most people do not know they have encountered an infected mosquito, or they have mild flu-like symptoms.  

We ask for your continued good wishes, energy, and prayers that Mum will continue to find the determination and will to heal and recover.  As one of her many friends said today, "Isabel is a great believer in the power of prayer and community."   Your many phone calls, e-mails and cards are witness to the huge community that hold her dear.

We also know that the continuing excellent care of the staff at the ICU and the other medical consultants working on her case are essential to her recovery.

Today is a beautiful harvest day in Saskatchewan. The hum and dust from combines, grain trucks, and swathers fill the air.  Mum's other grand-kids, Mary and Josh, helped me pick apples, beans, tomatoes, and cucumbers from her garden.  Yes, and zucchini, too!  Lock your trucks or you may find zucchini on the front seat!

Thank you for your ongoing love and care poured out in so many ways.

Catherine, Nancy, and Janet

Thursday evening, August 16

Janet, Nancy and I met today with the Doctor (known as an Intensivist) in the Intensive Care Unit who has been co-ordinating Mum's care since Monday. This care includes consultation with other specialists including neurologists.

Mum has a severe meningitis. The cause has not been identified. She is being treated with several drugs to cover a variety of possibilities of infection. She continues to be in a coma. Her condition continues to be very critical, however, the Doctor says Mum is showing slight improvement.

We deeply appreciate the flood of e-mails and phone calls that have come our way from across North America, Scotland, England and Australia. We are telling Mum about each one of them.

The medical team has told us that the best way we can support Mum's healing is to provide stimulation through conversation, music, and reading to her.

Many of you have asked how YOU can be supportive. We welcome your notes and cards. Please consider writing a short note or letter about your activities (how harvest is going, what flowers are in your garden, what your families or pets are doing, your summer holidays, what you can see from your window). Descriptive items such as these can help Mum think about you and what you are doing as these days pass. Humorous incidents are welcome.

You can either e-mail them to me at: catherine.barnsley@usask.ca

or send them by Post to:

Box 190
Abernethy, SK
S0A 0A0

We will read them with Mum as often as we can. We have had a variety of signs that she is hearing us when we speak.

Thanks for all your love and care and prayers. The support means so much to us.

Catherine

News of the Health of our mother - Isabel Barnsley

Wednesday evening, August 15

Hello Family and Friends

Some of you know and many of you may not, that our mother, Isabel Barnsley, is critically ill in the Intensive Care Unit of Regina General Hospital.

She is in a coma with an undiagnosed neurological condition. Several specialists are working on her case. There are patients with similar and in some cases nearly identical symptoms in Saskatchewan hospitals.

Many people have phoned and e-mailed and we thank you for your care and concern. We are not able to respond to all e-mails and phone calls, and have set up a weblog where we will post messages on a daily basis or as her condition changes.

Click here:

http://isabelbarnsley.blogspot.com/

You will find this message that you are reading right now posted at that site and we will continue to add more.

Late last week, Mum developed influenza-like symptoms including digestive problems and muscle ache. We took her to her Doctor and later that day she was admitted to Balcarres Hospital because of dehydration. On Saturday, her condition worsened. She was moved to Regina and her condition continued to deteriorate.

As a family we have been reassured by medical staff that we did everything we could to promptly help her.

At this time, there is no cause for alarm to the Abernethy community that her condition is contagious. Public Health is monitoring closely.

Our days have been very full as we meet with medical staff and spend time with Mum. We are sorry that we have been unable to inform many of you until this time. We would welcome you forwarding this e-mail to others who know us or giving updates to others by phone if you know that people do not have e-mail.

At this time, we very much appreciate e-mails and phone messages, but are not able to respond to all of them.

Thank you for your love and care and prayers. We continue to pray that Mum's spirited determination and passion for life will provide her with the strength she needs as she struggles to heal.

Janet, Nancy & Catherine