People are like stained glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only by a light from within.
(modified from : Elizabeth Kubler Ross)
Photos of Alysha in the hospital.
After 7 weeks, the family is ready to share photos of Alysha's recovery. We have chosen photos that bear the most likeness to the Alysha we knew prior to her brush with death and severe brain injury. We have gone back and embedded the photos in the blog within the time frame that they were taken. For the time being we have left out the photos of when she was in a coma. In that first week Alysha's hold to life was so tenuous it is hard to see and share those photos.
Alysha update September 17/12
A corking marathon, and the health record hurdles.
Alysha is presently attempting a 24 hour corking marathon. She has made it through the day and evening and is still going strong. Her coughs are strong. She hasn't required any suctioning, and her vital signs and blood oxygen levels are normal. Go Alysha Go !!
Lisa was told this morning that Alysha didn't have a restful night. She was however, awake and productive in the morning. Alysha's activities included some sitting with the physiotherapist at the side of the bed, a hoist into her chair and a few trips down the hall and to the window.
The psych team was in again today. They told Lisa and Rich they could expect to be invited to a multidisciplinary meeting to coordinate Alysha's care in the future. A date hasn't been set but the family is hopeful that it will be soon.
To keep within the sporting theme, Lisa's quest for Alysha's health records resembles the Olympic 400 meter hurdle event. Lisa filled out the forms required for access to her daughter's health records today and was told that the, "floor manager," would be in to see Lisa about her request. Lisa asked them to prioritize her request as she understood it would take at least four days to process her application. The hours ticked away and by late afternoon when no one had come to see her, Lisa inquired again about the status of her request. She was informed that the nurse who was supposed to deal with Lisa's plea had gone home for the day. Yet another hurdle. Lisa will try again tomorrow. Go Lisa Go !!
Alysha update September 15th and 16th/ 12
Corked and on the move.
On Saturday Alysha was pretty sleepy. She was corked for 9.5 hours. During this time she didn't require an oxygen mask over her face as she has in the past. A sign of improvement. On Sunday Alysha was awake most of the day. She was corked for 10.5 hours. Unencumbered by tubes attached to the wall, Ron wheeled Alysha to the window a few times this weekend to look out. On Sunday in particular she seemed to light up when she saw the outside through the window. Visitors over the weekend were Ron, Carolyn, Deanna and Yvette. Ron reports that Alysha couldn't keep her eyes off of Deanna when she visited. Carolyn rolled up and bound sponges for Alysha's hands to keep her from having a closed fist with some success. Ron started a log of all the medications that Alysha receives and the events that take place in the day, so that the family have a better idea of the patterns and reactions to certain medications and routines and therapies. I suppose if the hospital isn't going to allow the family to see their records we will have to make our own.
The family has been in contact with a national patient advocate who gave us links to the relevant legal documents regarding patient records. It seems that there is allowance for substitute decision makers to access medical records. Lisa has been relied on as a substitute decision maker since July 25th/12. Lisa will try again to get a copy of Alysha's chart armed with the supporting documents. The links to the relevant laws / documents are below.
Link: St Joseph's Hospital in London Parents as substitute decision makers may access medical records.
Link: Personal health information protection Act. Part 3 Consent concerning personal health information
Alysha update September 14/12
6 month process to access medical records.
Today the hospital staff informed Lisa that the fastest way to jump through the legal hoops to have legal status to receive a copy of Alysha's records will take 6 months at a minimum. This seems like a rather large barrier to transparency regarding the care Alysha is receiving in this institution. Delayed transparency? Jason, Chrissy and the boys have been frequent visitors to the hospital.
Alysha update September 12th and 13th/12
Obstacles to coordinated care and reviewing Alysha's records.
Over the past two days, Alysha has been resting/ sleeping a lot and the staff have been taking it easy with Alysha because of the fever she spiked two days ago. The family received conflicting information from two different nurses regarding whether or not blood work confirmed an infection. They haven't corked her trach, but she has been up in her chair and doing small amounts of physiotherapy. The doctor in charge of Alysha's care right now is the surgeon who originally performed her tummy tuck. He told Lisa late last week that he wanted Alysha to have intensive physiotherapy. Lisa is questioning whether 5 - 10 minutes of sitting at the bedside constitutes intensive physiotherapy. Lisa, Rich and/or Ron spend every single day at Alysha's bedside and are willing and able to implement any rehab program the medical experts recommend.
Over the past 2 days Alysha was visited by the neurology and psych teams. Each team did separate assessments and are awaiting a group meeting to coordinate their recommended care plans. Frustrated by how slowly things are getting organized for Alysha, Lisa met with a social worker assigned to the family. In St. Michael's hospital in Toronto the social worker takes on a patient advocacy role. At the suggestion of the social worker the family wrote down all of their questions about Alysha's condition and care and submitted them to the staff on September 13th. The family was informed that the soonest a meeting to review their daughter's care could be arranged with the surgeon responsible for Alysha's care was next Thursday a full week from the day of their request.
Yesterday, after 7 weeks of incomplete, inconsistent information about Alysha's condition (history, cause, prognosis) and care, Lisa finally got the courage up to request a copy of Alysha's medical chart. Lisa's formal written request was denied because Lisa doesn't have power of attorney or legal guardianship of her adult daughter. It is curious that Lisa has frequently been asked to provide her consent for life saving/ improving treatments for Alysha at St. Michael's hospital without these legal designations but she can't see the documented steps relating to Alysha's care at said hospital. Lisa was given a number to call to start the process of becoming Alysha's legal guardian. She has requested the hospital's help expediting the process.
Alysha update September 11/12
A corking marathon, and the health record hurdles.
Alysha is presently attempting a 24 hour corking marathon. She has made it through the day and evening and is still going strong. Her coughs are strong. She hasn't required any suctioning, and her vital signs and blood oxygen levels are normal. Go Alysha Go !!
Lisa was told this morning that Alysha didn't have a restful night. She was however, awake and productive in the morning. Alysha's activities included some sitting with the physiotherapist at the side of the bed, a hoist into her chair and a few trips down the hall and to the window.
The psych team was in again today. They told Lisa and Rich they could expect to be invited to a multidisciplinary meeting to coordinate Alysha's care in the future. A date hasn't been set but the family is hopeful that it will be soon.
To keep within the sporting theme, Lisa's quest for Alysha's health records resembles the Olympic 400 meter hurdle event. Lisa filled out the forms required for access to her daughter's health records today and was told that the, "floor manager," would be in to see Lisa about her request. Lisa asked them to prioritize her request as she understood it would take at least four days to process her application. The hours ticked away and by late afternoon when no one had come to see her, Lisa inquired again about the status of her request. She was informed that the nurse who was supposed to deal with Lisa's plea had gone home for the day. Yet another hurdle. Lisa will try again tomorrow. Go Lisa Go !!
Alysha update September 15th and 16th/ 12
Corked and on the move.
On Saturday Alysha was pretty sleepy. She was corked for 9.5 hours. During this time she didn't require an oxygen mask over her face as she has in the past. A sign of improvement. On Sunday Alysha was awake most of the day. She was corked for 10.5 hours. Unencumbered by tubes attached to the wall, Ron wheeled Alysha to the window a few times this weekend to look out. On Sunday in particular she seemed to light up when she saw the outside through the window. Visitors over the weekend were Ron, Carolyn, Deanna and Yvette. Ron reports that Alysha couldn't keep her eyes off of Deanna when she visited. Carolyn rolled up and bound sponges for Alysha's hands to keep her from having a closed fist with some success. Ron started a log of all the medications that Alysha receives and the events that take place in the day, so that the family have a better idea of the patterns and reactions to certain medications and routines and therapies. I suppose if the hospital isn't going to allow the family to see their records we will have to make our own.
The family has been in contact with a national patient advocate who gave us links to the relevant legal documents regarding patient records. It seems that there is allowance for substitute decision makers to access medical records. Lisa has been relied on as a substitute decision maker since July 25th/12. Lisa will try again to get a copy of Alysha's chart armed with the supporting documents. The links to the relevant laws / documents are below.
Link: St Joseph's Hospital in London Parents as substitute decision makers may access medical records.
Link: Personal health information protection Act. Part 3 Consent concerning personal health information
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| Deanna visits Alysha |
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| Alysha and her stepsister Deanna prior to Alysha's surgery |
Alysha update September 14/12
6 month process to access medical records.
Today the hospital staff informed Lisa that the fastest way to jump through the legal hoops to have legal status to receive a copy of Alysha's records will take 6 months at a minimum. This seems like a rather large barrier to transparency regarding the care Alysha is receiving in this institution. Delayed transparency? Jason, Chrissy and the boys have been frequent visitors to the hospital.
 |
| Jacob gives his cousin a kiss |
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| Jason, Chrissy, Noah and Jacob |
Alysha update September 12th and 13th/12
Obstacles to coordinated care and reviewing Alysha's records.
Over the past two days, Alysha has been resting/ sleeping a lot and the staff have been taking it easy with Alysha because of the fever she spiked two days ago. The family received conflicting information from two different nurses regarding whether or not blood work confirmed an infection. They haven't corked her trach, but she has been up in her chair and doing small amounts of physiotherapy. The doctor in charge of Alysha's care right now is the surgeon who originally performed her tummy tuck. He told Lisa late last week that he wanted Alysha to have intensive physiotherapy. Lisa is questioning whether 5 - 10 minutes of sitting at the bedside constitutes intensive physiotherapy. Lisa, Rich and/or Ron spend every single day at Alysha's bedside and are willing and able to implement any rehab program the medical experts recommend.
Over the past 2 days Alysha was visited by the neurology and psych teams. Each team did separate assessments and are awaiting a group meeting to coordinate their recommended care plans. Frustrated by how slowly things are getting organized for Alysha, Lisa met with a social worker assigned to the family. In St. Michael's hospital in Toronto the social worker takes on a patient advocacy role. At the suggestion of the social worker the family wrote down all of their questions about Alysha's condition and care and submitted them to the staff on September 13th. The family was informed that the soonest a meeting to review their daughter's care could be arranged with the surgeon responsible for Alysha's care was next Thursday a full week from the day of their request.
Yesterday, after 7 weeks of incomplete, inconsistent information about Alysha's condition (history, cause, prognosis) and care, Lisa finally got the courage up to request a copy of Alysha's medical chart. Lisa's formal written request was denied because Lisa doesn't have power of attorney or legal guardianship of her adult daughter. It is curious that Lisa has frequently been asked to provide her consent for life saving/ improving treatments for Alysha at St. Michael's hospital without these legal designations but she can't see the documented steps relating to Alysha's care at said hospital. Lisa was given a number to call to start the process of becoming Alysha's legal guardian. She has requested the hospital's help expediting the process.
Alysha update September 11/12
Alysha goes for a stroll
Alysha had a very relaxed and responsive day with Rich and Lisa. Alysha's involuntary movements were infrequent and she didn't arch her back at all during the day. The physiotherapist worked with Alysha sitting at the side of the bed again and doing some exercises. Her trach was corked for 10 hours and this allowed for a special mobile treat. Alysha was moved into a wheel chair and went for a roll out of her room and around the care unit with Lisa and Rich. They stopped at the window which overlooks down-town Toronto. Alysha seemed to like the change in scenery.
At 7:00 pm Alysha's condition changed dramatically, she became very restless, with lots of repetitive leg movement, back arching and flailing. On examination the nurse found her to have a fever of 38.9*C.
The physch team visited Alysha during a half hour period when she was sleeping. They made some medicaiton recommendations but we await coordination with the other teams for the changes to be implimented. Neither of the other two specialties made it to Alysha's bedside today although Lisa did video Alysha's movements after 7:00pm to show the neurology team when they are available.
The physch team visited Alysha during a half hour period when she was sleeping. They made some medicaiton recommendations but we await coordination with the other teams for the changes to be implimented. Neither of the other two specialties made it to Alysha's bedside today although Lisa did video Alysha's movements after 7:00pm to show the neurology team when they are available.
1 comment:
Love you alysha! Praying for you. Hope you get well soon :) <3
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