The Road to Recovery - week 10 (St. Michael's Hospital - Toronto)

A little bit of something beats a lot of nothing.  Break the largest of difficult tasks into the smallest of steps and it can be done.        (Dan Millman)

Alysha update October 1/12
Alysha attracts a crowd.
      Lisa reports that Alysha had a fantastic day.  She attributes this to the adjusted balance of medications and the fact that Alysha has slept well for the past two nights.  
      In the morning Lisa worked with Alysha with flash cards.  The mental exercises were followed by muscle control and range of motion exercises.  In the afternoon,  subsequent to a small nap, Alysha spent some time on the tilt table.  They were working at getting Alysha to move to the right and to the left and balance herself in an upright position.  The physiotherapist, Lisa and Rich were so excited by how well Alysha was doing that they drew a crowd of nurses who came to see what the commotion was all about.  Everyone seemed pleasantly surprised to see Alysha working so well with the therapist.  
      Lisa tried to video the tail end of the therapy sessions but the minute Alysha sensed that a picture or video was being taken she stopped performing. 

Alysha update September 30/12
Alysha remains uncorked.
      Ron reports that today was a sleepy day for Alysha.  She was a little agitated this morning doing the "twitch" movements.   She relaxed completely after her 2 pm medications were given and she was in her chair.
      The Ear Nose and Throat specialist and the Respiratory therapist were in today to assess if there is anything obstructing her airway as Alysha doesn't seem to be tolerating the cork lately.  They put a small scope through her nose and down her throat.  They also removed her tracheostomy insert.  They were looking for swelling or anything else that might prevent air flow.  In the end, they found patent airways.  The respiratory therapist tested Alysha with her finger over her trach and there was airflow up her throat to her nose and mouth.  The therapist said that she would return later to try to cork her but she didn't return to do this.
      Ron reports that Alysha woke up frequently this afternoon and each time it looked like she wanted to cry.  He couldn't figure out a source of discomfort so he figured it might be pain from the scope this morning.
      Ron also reported that the nurses and sitters were exceptional all weekend.  He felt they listened to his concerns and did everything he asked of them.  He believes that the weekend staff were very compassionate regarding Alysha.
      Memere visited today.

Alysha update September 29/12
A full day of rehab with Dad.
      Alysha was awake all day and sat in her chair for a couple of hours.  Ron worked with her throughout the day to strengthen her arms and hands as well as stretching her calf muscles.  Ron also worked with Alysha's flash cards.
      At 5:30 Alysha started some involuntary repetitive movements.  She was moving her upper body from right to left as well as having a "hiccough," type movement every 5 to 15 seconds.
      Alysha's night-time medications were given a couple hours early today to prevent her from getting over-aggitated and unable to calm down for the night.

Alysha update September 28/12
Alysha tries to end her therapy session early.
      Alysha had a restful day.  The physiotherapist was in and had Alysha sitting at the side of the bed again.  Alysha doesn't like these rehab sessions with the therapist and often cries when the therapy get's started.  Alysha usually settles down after Lisa reassures her and tells her she needs to do her exercises to be able to go home. 
      Each therapy session at the side of the bed ends with the therapist supporting Alysha to adopt a position lying on her side and helping her to lift her legs on the bed.  Mid-way through the therapy session today, Alysha moved herself into a side-lying position and brought her legs up onto the bed to indicate that she wanted the session to end. 
      Today, Lisa was looking into the medications that Alysha is taking.  Alysha has been taking a drug called clonadine since her time in the ICU.  Lisa asked what the purpose of this drug was.  The staff told her it was for elevated blood pressure and pain.  Lisa pointed out that Alysha is already taking another medication for blood pressure and she doesn't believe her daughter is in pain.  Lisa questioned the necessity of this drug.  The staff looked into this and agreed with Lisa that the drug is possibly unnecessary.  Plans are being made to wean Alysha off the drug.
  
Alysha update September 27/12
Passive Standing and a new drug.
      Last night Alysha received her Night-time medications 2 hours early.  This helped her to relax and fall asleep.  The drug that is being used to relax Alysha is Loxapine.  When Lisa arrived in the morning she found that the repetitive, involuntary movements were continuing but they were infrequent and much less pronounced.  Lisa described them as "twitches."
      The psych team came to assess Alysha today.  They advised that the drug Loxapine won't help to stop Alysha's twitches.  They recommended she start taking clonazepam and continue to wean off of Loxapine.  Clonazepam is an anti-anxiety medication that inhibits brain activity and is used to prevent certain types of seizures.  Over time humans develop a tolerance to the anti-convulsant properties of this drug which limits it's long-term effectiveness. Some side effects of the drug include drowsiness and interference with cognitive and motor performance. This drug is addictive as it causes physical dependence.
      Alysha had her second therapy session that involved passive standing supported on a tilt table. A tilt table is a portable padded table on which patient's lie supine with straps around their knees, hips and chest to keep them in place.  The therapist gradually brings the patient to an almost vertical position by inclining the table mechanically. Benefits to passive standing include prevention of contractures, improved range of motion, reduction of muscle spasticity, prevention of osteoporosis, improved circulation, reduction of lower extremity edema, pressure relief to vulnerable ares to help prevent pressure sores, improved bowel and bladder regularity, and decreased risk of chest infections and pneumonia.
      A neurology team is coming up from the 9th floor to advise on aspects of Alysha's care and rehabilitation.  The family feel strongly that Alysha would be better cared for on the 9th floor, but appreciate any involvement from people who specialize in caring for people with Alysha's challenges.

Tilt Table

Alysha update September 26/12
Repetitive, involuntary movement all day preventing sleep
      Today was a tough day for Alysha.  She didn't sleep at all last night and was repeating through constant involuntary movements that included her legs, arms and neck all day long.  Lisa and Rich tried moving her to her chair and back to her bed to see if that would make a difference.  They tried applying counter pressure or traction to the moving body parts but the automatic jerky movements persisted.  When you try to massage Alysha's neck, back or arms in the area of the affected muscles, everything feels incredibly tight and we assume this must cause Alysha pain.  Alysha's 2 o'clock medicines didn't do anything to decrease these movements.  At times in the day, Alysha looked exhausted and cried.  It is as though she is trying to sleep but can't because the movements prevent this.
      Someone from the hospital came to speak to Lisa about custom making some splints for Alysha's wrists, hands and fingers.  The splints are to prevent Alysha from holding a contracted/ flexed position in these extremeties.  Long term contracture of these body parts will shorten some tendons and lengthen others causing pain and an inability to move normally in the future. The splints are not covered by OHIP or the hospital and represent an out - of - pocket expense.  The specialist recommended custom made wooden splints that cost $80.00 each.  Lisa was concerned that the recommended splints didn't have padding and was worried about the possibility of Alysha accidentally hitting herself in the face with involuntary movements.  Lisa was also concerned about custom fitting Alysha with splints as Alysha's wrists and hands have been continuously getting smaller because of weight loss and muscle wasting.  An alternative was proposed after listening to Lisa's concerns that involves non-customized padded splints.
   

Alysha update September 25/12

Back to Back sleepy days.

      Today was another sleepy day for Alysha.  Alysha's trach remains uncorked.  As you can see in the picture below there is a mask and attached hose that fits loosely over the tracheostomy opening.  This mask merely delivers moist air to help with breathing.  Alysha doesn't require the administration of supplimental oxygen. 

The Road to Recovery - week 9 (St. Michael's Hospital - Toronto)

What lies behind us and what lies before us are tiny matters compared to what lies within us. (Ralph Waldo Emerson)

Alysha update September 24/12
Unnecessary suctioning and a curious finding.
      The RN's reported to Lisa this morning that Alysha had a restless night and required frequent suctioning through the night.  Lisa was surprised that Alysha needed the suctioning all night given she didn't require any suctioning while Lisa was with her during the day.  Alysha has a strong cough and can cough the secretions out her trach tube.  All that is required that someone grab the secretions at the end of the trach tube with a tissue.  Lisa did this all day long and didn't understand what had changed that Alysha required suctioning at night.  Lisa spoke to a nurse about this.  Suctioning isn't a benign action.  It causes irritation to Alysha's wind-pipe and it actually causes more secretions.  When Lisa arrived in the morning Alysha was particularly restless and behaving as if she was distressed and in pain.  Lisa noticed the unusual behaviour in her daughter right away.  The nurses on the floor received a timely inservice on removing secretions from Alysha's airway today as a result of the possibly unnecessary suctioning that is happening when Lisa and Rich are not around.  As time goes on it becomes more and more clear that the plastic surgery floor is an inappropriate place to continue to care for Alysha.  The floor she was admitted to as a beautiful, healthy, bright 21 year old is no longer the appropriate place for our now severely disabled girl.  More attempts will be made by the family to advocate for Alysha being cared for in a more appropriate area of the hospital that specializes in brain injuries.
      Abigail, Zoe and I went down to visit Alysha today.  Alysha was peacefully sleeping for 10 minutes at a time waking briefly to cough out some mucus and then falling back asleep again. While we were sitting around talking, Rich noticed that an Ambu bag was hooked up with oxygen running into it by Alysha's bedside.  This device is used to deliver aritificial breaths for someone who is not breathing on their own.  When asked about why this device was out and appeared as though it had been used, the nurses informed the family that they weren't aware of any need for it's use.  Lisa will look into this further.

Ambu bag - resuscitator

Alysha update September 22nd and 23rd/12
A testament to a mother's commitment.
     Saturday was a sleepy day for Alysha.  Ron, Deanna and Carolyn were with Alysha in the morning and Michelle and Jeanne were with her in the afternoon and evening.
      Sunday was a productive day for Alysha, Lisa and Rich.  After last week's depressing multidisciplinary meeting, Lisa has been hard at work organizing and implementing a plan to rehabilitate her daughter, build on her abilities and keep her motivated.  Lisa was determined not to lose momentum with Alysha's physical rehab over the weekend as physiotherapy is a short-duration weekday occurrence.  On 3 different occasions during the day on Sunday, Lisa and Rich worked with Alysha on her core strength (back, abdomen and neck), range of motion and movement on demand.  Picture this.  All 3 members of this family were on Alysha's bed.  Lisa and Rich supported Alysha in a sitting position with Rich behind her and Lisa sitting at the foot of the bed in front of Alysha.  Lisa provided an anchor for Alysha's hands and arms so she could pull herself to a sitting position.  Alysha also practiced flexing and extending her legs and holding certain positions at her mother's request and with her guidance.  At one point Alysha's arms were wrapped around her mother in a hug. Lisa asked her to hold her head up and look her in the eyes and she did this.
      With brilliant insight, Lisa and Rich employed the physical therapy sessions at times in the day when Alysha was showing signs of physical "agitation." They found that responding to Alysha's movements with a physical therapy session reduced her agitation and non-productive movements.
      Lisa also bought some flash cards for Alysha.  She said, "If we've got to start back at the beginning like a baby we should start now."  Today the flash card topics were colours and animals.  Alysha seemed to pay particular attention to the animal cards.  Lisa didn't ask Alysha to identify any of the images, she simply reviewed them.
      This family is not going to sit by and let their daughter be written off.

Alysha update September 21/12
A responsive morning followed by inappropriate sedation.
     On the heels of our bad-news meeting yesterday Alysha started off the morning with a great session with the physiotherapist.  Alysha seemed motivated to hold herself up in a sitting position and showed good effort in keeping her head up. She responded accurately with corresponding movements when asked to kick her legs, both individually and together.  The physiotherapist would touch Alysha's leg to indicate which one she would like to see moved.  The morning session went so well that the physiotherapist said that she would return in the afternoon to teach Lisa and Rich some techniques for Alysha's rehabilitation.
      After a fantastic morning, Alysha fell asleep and Lisa and Rich left to get some lunch.  When they returned 30 minutes later Alysha's eyes were open.  They greeted her enthusiastically but she looked sleepy.   The RN then explained to Lisa that in the short time that Lisa was away, Alysha had awakened and was agitated so they gave her an extra dose of Loxapine (an antipsychotic drug) to settle her down.   The drug sedates Alysha so there would be no opportunities for an afternoon re-hab session.  Lisa was furious.  It appears that the moment Alysha starts to move about like human's do, the staff try to sedate her.  After being at her daughter's bedside for 2 months now, Lisa is a good judge of her daughter's agitation level.  Yesterday in the multidisciplinary meeting Lisa shared that she thought the staff were over-medicating Alysha.  They give her drugs as soon as she makes any movements instead of waiting until she is truly agitated.  Lisa told staff yesterday, "my daughter should be allowed to move!"  Lisa called the charge nurse and the plastic surgeon and pointed out the error that had been made today.  As a result, the drug order was re-written from prn (as needed) to prn as per the family's determination.  The extra doses of Loxapine are not to be given without the family's permission.
      Interestingly, when we researched this drug, many of it's side effects are the same as the symptoms the drug is being used to treat.  "Agitation, restlessness, drowsiness, droopy eyes, spastic muscle movements, fever."  Another interesting side effect is excessive salivation (could this be why they had to uncork Alysha because of excessive secretions?)

Alysha update September 20/12
Multidisciplinary Meeting.
      When Lisa arrived at St. Michaels' hospital in the morning she discovered that Alysha had experienced a set-back regarding her breathing.  They had to uncork her tracheostomy in the morning because her lung secretions had increased.  Alysha was unable to clear them with her coughs and required more frequent suctioning.  This was not the end of the bad news today.
       Lisa, Rich, Ron and Jeanne attended a multidisciplinary meeting about Alysha today.  While everyone agrees that there is still a small chance of a better prognosis it is most likely that what we see now is how Alysha will remain.  She is minimally responsive, unable to speak, walk, weight bear or control her bladder and bowels, and has periods of spastic muscle movements that involve her back, neck, legs and arms.  They expect by looking at her brain scan results that Alysha is severely visually impaired, and has no short term memory.  They showed the family a copy of Alysha's brain scan.  Lisa said that there is no part of her brain that doesn't have widespread damage. 
      The family asked why it seemed as though Alysha was more able and responsive earlier in her recovery than now.  They were told that it takes a while for the full extent of brain damage to manifest itself.  The family was also told that it is possible that the code blue on August 22nd could also have caused further brain damage but there is no way of knowing for sure.
      Rich questioned whether or not it is appropriate to have Alysha remain on the plastic surgery floor.  He questioned how many other non verbal, immobile, severely brain injured patients the RN's on this floor had experience with. The hospital has a brain injuries program on the 9th floor and it was proposed that perhaps it would be best for Alysha to be cared for there.  The plastic surgeon in charge of Alysha's care will be looking into this.
      The family asked about more extensive rehab for Alysha.  They were told that presently Alysha doesn't qualify for rehab.  She needs to be able to respond to simple instructions like, "bend your leg, straighten your arms etc," Presently Alysha can't do this.
      If Alysha is never going to qualify for rehab, then Lisa wants her daughter to get well enough to come home where Lisa believes that she can provide the best care for Alysha. 


Alysha update September 19/12
Corked for 3 days.
      Alysha has had her tracheostomy corked for 3 days now.  The hospital staff will consider removing it when Alysha has gone 48 hours without needing to have secretions suctioned from her airway.  They  suctioned her last on the night of the 18/19 (Tuesday night). 
      Mom (Barb) and I visited with Alysha this afternoon.  We saw the staff and Lisa and Rich move Alysha with the hoist from her chair to her bed.  Her eyes were wide open for the ride and I thought they looked a little fearful but Lisa told us that Alysha enjoys the lift from location to location.
      It was quite amazing to see Lisa and Rich organizing and doing the work of the safe transfer of Alysha to her bed.  In the short time that we were there Lisa also coordinated Alysha's feeding that had been delayed past when it was supposed to be initiated. 
      Thanks to the help of the nurses in the unit, Lisa was able to get a copy of part of Alysha's chart, to review with the family's general practitioner.  Lisa initially declined the nurses notes as they were offered separately and has since asked for a copy of those as well.  
      On September 20th there will be a multidisciplinary meeting that the family was invited to.

   

The Road to Recovery - week 8

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

Deanna visits Alysha

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

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 Road to Recovery - week 7

Not everything that is faced can be changed but nothing can be changed until it is faced. (James Baldwin)

Alysha update Sept 10/12
Sleep at long last.
      Alysha finally fell asleep last night at 11:00 pm.  She slept through the night and through most of the day today.  The neurology team came up to see Alysha but she was peacefully sleeping so they were unable to do their assessments.  The medication and phsych teams did not come to do their assessments today.
      Today Alysha's trach was corked for 8 hours.   Physio had Alysha sitting up at the side of the bed but Alysha just wanted to sleep, so the session was cut short.

Alysha is resting
Recovery is hard work

Alysha update Sept 9/12
Elusive Sleep.
      Alysha's dad did indeed stay the entire night with Alysha the night of September 8th-9th.  Once again Alysha didn't sleep any of the night.  Ron was busy hoisting her up in the bed, wiping her down with a cool cloth, rolling her onto her side and comforting her.  On a few occasions he thought he had succeeded in getting her to sleep only to have her wake up minutes later.  Even after her morning medications she remained awake and restless.
      Throughout the day sleep continued to evade Alysha.  She sat in her chair for 4 hours today, but they didn't cork her trach.  Visitors today found her tired and pale.  Ron reported that she didn't exibit as many of her repetitive movements but he suspects that is more a function of her exhaustion than of any improvement in her condition.
      Aunty Shell, Nana, Jayden, Abby, Carolyn, Deanna, Memere and Ron all visited with Alysha today.

Alysha and her cousin Jayden

Alysha and her Auntie Michelle

Alysha update Sept 8/12
Treatment for oral thrush after a 5 day delay.
      This morning, the medical staff person working with Alysha got her right up and into a chair.  Lisa braided her hair and reported that Alysha's involuntary movements were less frequent.
      Alysha looked distressed when they attempted to cork her trach in the morning.  Lisa theorized that her throat might be sore, which is why Alysha would prefer to have breathing occur at a level lower than her throat. As she was working through this theory she had a "eureka moment," linking a diagnosis of thrush (oral yeast infection) with a possible sore throat.  The diagnosis was made 5 days ago but the treatment hadn't started.  Lisa successfully campaigned to initiate treatment ASAP.  She also requested Alysha be investigated for additional side effects of yeast.
      Later in the day they did cork Alysha's trach for 1.5 hours without much resistance from Alysha.  Ron reports that Alysha had a very restless afternoon despite receiving her daily medications that are supposed to relax her.
      There was some excitement about Ron (Alysha's dad) staying for the night to help with Alysha's care.  The staff on the floor invited an ICU nurse up from the 4th floor to inform Ron that he couldn't stay the night because Alysha is in an area where the patients are all women.  Ron told them he wasn't leaving his daughter and from the last message I received from Ron...he was staying.  Given how busy Lisa was through the night previously with Alysha, I immagine the staff will be happy with Ron's extra help as they continue to have Alysha in an area of the hospital that is understaffed to meet her needs.

Alysha update Sept 7/12
A long night for mother and daughter.
      Alysha and her mother Lisa spent last night outside the ICU.  Alysha was restless the entire night and Lisa was awake and busy most of the night repetitively hoisting Alysha back up on the bed and helping with Alysha's personal hygene.
      Alysha continued in this restless state untill her 2:00 pm medications and then, at long last, fell asleep.
      The physiotherapist was in again today and had Alysha practicing sitting at the side of her bed.  Lisa spoke with the doctor responsible for overseeing Alysha's care for the day and there is a plan for assessments by the medication, neurology and physch teams on Monday.  The family hopes that they can find a medication that will help with the involuntary movement and begin to figure out Alysha's level cognitive function/ability. (Cognition is a group of mental processes that includes, attention, understanding, perception, memory, understanding language, solving problems and making decisions.)

Alysha update Sept 6/12
Out of the ICU for the 3rd time.
    Alysha moved out of the ICU again today.  Her supports were increased to help with the transition to a less supervised care model. Over the next few days a nurse and respiratory therapist from the ICU will be regularly checking on Alysha.  Alysha has once again been assigned a "sitter" and Lisa is staying the night to help with Alysha's care.  Lisa felt reassured that the Charge Nurse on the floor today understood the family's concerns.
      The family was dealt a heavy blow today when they were told that it is expected that Alysha won't ever walk again.  The best that we can hope for is that Alysha can weight bear to help with transfers in and out of beds and chairs.  Alysha will require a special wheel chair that will accommodate her spastic back arching.  It is likely that she will not be able to move her wheel chair on her own. Plans are being made to fit Alysha for her specially designed wheel chair in the near future.
      This inevitable information came from a physiotherapist who has developed a nice rapport with Alysha and her family.  Lisa appreciated this woman's candor.
      Today, Alysha's story made the front page of the Barrie Examiner, SILObreaker and the Owen Sound Times.  The story was also picked up by Georgian College where Alysha was enroled in the Tourism and Travel Program. You can read the articles by clicking on the links below.

Link- Georgian student fighting for life in hospital
Link- Ordinary procedure leaves young woman fighting for life

      Alysha will require expensive assistive devices to move toward independence.  This was confirmed today by medical staff.  A trust fund has been set up to collect donations from the public to help cover the expense of these medical aids.
      An account has been opened at Elmvale TD Canada Trust, Branch/Transit no: 24002,  Account number: 03406303593.  All contributions are welcome.

Alysha update Sept 5/12
Alysha's new feeding tube - PEG tube
      Today, through a procedure called percutaneous endoscopic gastroscopy, they placed a feeding tube (PEG tube) into Alysha's stomach through her abdominal wall.  This replaces the feeding tube that previously entered Alysha's stomach from her nose (nasogastric tube or NG tube).  In the long term this will be more comfortable for Alysha as she no longer has a tube going into her nose. The family was informed yesterday at noon that the procedure had been arranged for that afternoon. Alysha had been given no food all morning and afternoon for 2 days in preparation for the procedure that was supposed to have happened yesterday but took place today.   This evening it is time to test out the new tube and feed our hungry girl!
      Alysha spent a couple more hours with her trach tube corked this morning.  This afternoon, the family was informed that Alysha would be moving out of the ICU again tomorrow. As nothing seems to have improved since the last time she returned to the ICU the family has MAJOR concerns that this planned move is another premature attempt to move Alysha to another area of the hospital which is unable to manage the acuity of care that Alysha requires because of a lower staff to patient ratio than in the ICU.  Lisa was informed that if she felt strongly about getting her daughter the care she requires outside of the ICU she was welcome to hire a full time RN at her own expense.
     Attempts to gain knowledge of Alysha's condition, be included in her care plans and advocate for a more coordinated multifaceted approach to Alysha's health and recovery were unsuccessful today.
   

Alysha update Sept 4/12
Voluntary or Involuntary movements? 
      Alysha had an incredibly restless day.  Her legs were flexing and extending all day long.  She was arching her back and sliding down in her bed and chair.  Her arms remained flexed with her hands at her neck, her wrists twisted and fingers firmly flexed.  Usually Alysha enjoys being upright in her chair and she relaxes. Today however, Alysha's restlessness continued even in the chair.  Lisa brushed and braided Alysha's hair and rubbed cream into her legs while verbally reassuring Alysha in an attempt to help slow Alysha's constant movements.  I was with Lisa today and I watched her efforts have a relaxing effect on Alysha.  We are unclear about whether or not Alysha's movements are voluntary or involuntary.  If they are voluntary, do they represent Alysha's struggle to coordinate her movements or discomfort?  If they are involuntary are they caused by brain damage or medication side effects?
      We were asked by the staff to leave the ICU because they were doing rounds and were going to be getting to Alysha soon.  "Rounds" is a regular formalized practice of reviewing Alysha's condition and care with staff and students while purposely excluding family members.  Curiously, there is no regular, formalized practice of updating the family with the details of Alysha's care and condition.  Lisa told the nurse that she was concerned about leaving Alysha sitting up in her chair while she was moving so much without someone to watch her. The nurse told Lisa not to worry as she (the RN) would be there with Alysha.  Lisa was upset when she returned to the ICU to find Alysha was in her chair, unattended as her nurse was on her lunch break.  Alysha had slid down in the chair, her head was resting on the arm rest, and she was distressed, red faced and sweating.
      Lisa & Rich and/or Ron have been at the hospital every single day all day since July 24/12 and they are getting increasingly frustrated by the lack of information shared with them.  They would like to see more transparency and accountability with regards to Alysha's care.  They would like to be more fully informed about Alysha's evolving condition and more centrally involved in the decisions made about Alysha.  The family recognize that Alysha's needs are complex and they wish for a more organized, coordinated, multidisciplinary approach to meeting Alysha's many needs. They are still awaiting full disclosure of events that lead to Alysha's present condition and the two previous returns to the ICU.
      The family will be moving forward on their quest for more information and coordinated care by approaching the hospital based social worker assigned to Alysha's family and accessing the systems of patient advocacy offered at St. Michael's hospital in Toronto.