The Road to Recovery - week 6

The flower that blooms in adversity is the rarest
and most beautiful of all.  (Walt Disney)

Alysha update Sept 3/12
A relaxed day.
     Lisa and Rich spent the day with Alysha today.  She rested for most of the day. When she was awake she was relaxed, smiled and gave kisses.  They were unable to get Alysha up in her chair to sit because the lift that helps to transfer her body from her bed to the chair was broken.

Alysha update Sept 2/12
Corking the Trach Tube
     Two big items of news today.  The first is that Alysha communicated with her eyes today.  The Doctor asked Alysha a series of questions; could she open her eyes, could she close her eyes, could she keep her eyes closed for a period of time?  She responded to these 3 questions with the requested actions.  The Doctor then asked Alysha to close her eyes and keep them closed if she was in any pain. She kept her eyes open.  The Doctor said, I see from the fact that you kept your eyes open that you are not in any pain.  Alysha continued to keep her eyes open.
      The next big news is that they corked Alysha's trach tube today for half an hour so that she could practice breathing through her nose and mouth.  A cork is a plastic cap that they fit over the end of the trach tube.  With the trach tube corked, Alysha had the ability to make sound as air could travel through her vocal cords.  She made some moaning noises, but didn't say any words.  She also made coughing noises and had a cry with usual crying noises.  These are the first sounds we have heard Alysha make in almost 7 weeks.  Lisa reports that the sounds seemed to startle Alysha, as she is not used to making any noise.

Tracheostomy Cork

      Visitors today included Paul, Denise, Michelle, Nana King, Lisa and Rich.  Michelle thought Alysha looked very restless today.  Alysha's arms remained flexed at the elbows with her hands resting at the level of her neck.  Her wrists were contracted down or flexed and her fingers were flexed (curled under). Her flexed pointer finger stood up a bit more than the other fingers. Michelle said that she was only able to coax Alysha's arms down to her sides one time for less than a minute.  Alysha rests in the bed with her knees flexed and out to the side and ankles together up near her bottom (froggy position).  She then flexes and extends her legs continuously when she is restless. Sometimes her upper body will make jerky movements when she shifts her focus from one side to the other.



Alysha update Sept 1/12
A day with Dad.
      Ron stayed with Alysha for the day today. He reports that she was a bit restless in the morning.  The staff gave her medication and after that she slept most of the day. Alysha's vital signs were good for the day and her lungs are improving.   She only required airway-suctioning one time during the day. They are giving Alysha a new medication that decreases her agitation/ restlessness.  They told Ron  that until they figure out the proper dosage it may make her drowsy.  The nurse said that it could take up to a week to figure out the proper amount of medication to give Alysha, because everyone  processes medications differently. 
     Alysha smiled for her dad today and gave him a kiss good-night.  She got a little sad when he left but she settled after he explained that he would be back to see her soon.

Alysha, Dad-Ron and Memere-Yvette

Alysha update August 31/12
Alysha becomes responsive in the afternoon.
      For most of the day Alysha remained unresponsive. At around 3:00 pm that changed.  She began to open her eyes and track people again. She gave kisses to her family and smiled.  She cried at the end of the day when it was time for Lisa and Rich to leave for the night.  She is moving her legs a fair bit, but she isn't moving her arms as much.  Her hands remain contracted with fingers flexed and she can't hold or squeeze anyone's hand today.
      Yesterday we were told that Alysha's non-responsive condition was not related to any medications. Today we were told that she was given medications yesterday that could have caused the apparent decline in her condition.  We are left weaving the rare and often conflicting pieces of valuable information together into a confused understanding of Alysha's condition and care by the staff at St. Michael's hospital.

Alysha update August 30/12
Back into the ICU after a day.
      Alysha returned to the ICU this afternoon.  She continues to choke on plugs of mucus and require suctioning and one to one nursing which can't be provided outside of the ICU.  For the entire day Alysha has been completely non-responsive. If you pick up her hand it hangs limply in your grasp and flops down when you let go.  She didn't respond to any painful or annoying stimuli by the doctors or nurses today.  Occasionally she opened her eyes but didn't focus on anything or anyone.  Lisa said it is as though she is back in a coma with the exception of her eyes opening occasionally.  The staff are frequently having to suction her airway today.  Lisa is unclear about the sequence of events last night that lead to Alysha's present condition.  As usual, the practice of partial debriefing of the family regarding relevant events relating to Alysha's recovery was repeated for this latest setback.  In fact, the family continues to wait for the meeting with the doctor about the last code blue on August 22nd.

Alysha Update August 29/12
Alysha moves out of the ICU for the second time.
      Alysha moved out of the ICU today and into a private room.  The patient to nurse ratio is usually 5 to 1 during the day and 6 to 1 at night.  Lisa was assured that there would be an exception made for Alysha to receive 1 to 1 nursing for the remainder of her first 24 hours out of the ICU.
      Guests today were able to see Alysha in her new room.  There are no time restrictions or number of people restrictions for Alysha's visitors.  It is nice for the family to be able to see Alysha without having to stand outside locked doors and ask for permission as we did in the ICU.  Alysha's guests still need to dawn yellow infection control gowns and gloves because of Alysha's susceptibility to infections.  So today there were a number of yellow clad family members visiting with Alysha and each other in Alysha's new room.  Zoe and I joined Nana King, Lisa, Rich and Justin as the welcoming committee for Alysha's new room.  Zoe and I picked up a few gifts for Alysha including 2 pairs of bright knee socks, flavoured chap-stick and scented moisturizing cream.
      Justin reported that Alysha looked more restless and less responsive and energetic than on Monday. Alysha's activity and energy today is similar to yesterday.

Alysha Update August 28/12
Tired, but responsive. 
      Alysha seemed to have less strength than yesterday.  She was tired and slept most of the late afternoon and evening.  This morning the staff reported that she only had 2 hours of sleep last night because she was very restless. Regardless of her fatigue she continued to smile and make hearts and hold hands with her visitors today, it just seemed like each movement took more effort.  Earlier in the day the physiotherapist had her working at sitting up on the side of the bed with her legs dangling down.  Her right side seems to be stronger than her left because when she attempts to sit, she tips over to the left.

      It is likely that Alysha will be moved out of the ICU tomorrow and into a private room again.  The staff tell Lisa that the transition out of the ICU will be better organized this time.  A registered nurse will be with Alysha for the first 24 hours and they will be assigning a sitter that can touch Alysha and do tasks like clear out her breathing tube.  There will also be a respiratory therapist who will follow Alysha to her new floor.
      Visitors today included Chrissy, Jason, Lisa, Rich, Justin and Aashish.

The Road to Recovery - week 5

If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again.

Alysha update August 27/12
Hand hearts and high fives
      Nana King spent the day with Alysha today.  Justin visited with his sister as well today.  Alysha made a heart with her hands to indicate to her brother that she loves him.  They also shared a number of high fives.  Justin reported that Alysha was attempting to bite him every time he tried to thwart her attempts at removing her respiratory support system.
      Over the past 24 hours Alysha's kidneys have improved at their job of filtering her blood.  The woman who organizes dialysis for Alysha told the family that she doesn't expect Alysha will need dialysis again.  Alysha received another blood transfusion today.

Alysha update August 26/12
Another clog in the windpipe.
      Alysha had a restless night last night.  She pulled out her feeding tube and attempted to remove her PICC line.  By the time Lisa got in to see her this morning, the staff had replaced the feeding tube down the other nostril and wrapped her hands so that she couldn't get herself into any more trouble.
      While Ron was present today, Alysha choked on another plug of mucus and required suctioning and respiratory assistance through manual bagging.  We assume this is similar to what happened on the previous code blue but we can't be certain because the doctors have yet to debrief that incident.
      Another surprise to the family today was that Alysha had an Xray of her stomach yesterday.  They were doing another one today because "they weren't happy with the results." Again, we are unsure of the purpose of the original xray or the reason for the repeat as the staff aren't forthcoming with information about that.
      Ron reports that Alysha was happiest sitting in her chair today.  As soon as they put her in her chair she relaxed and fell asleep.

Alysha update August 25/12
Improved Responsiveness.
     Alysha continued today to respond to medical staff and visitors.  She opened her mouth and stuck out her tongue at the request of the nurse. Michelle, Nan and Jayden visited today and she reached out to hold her young cousin's hand.  She continues to breath on her own, but remains in the ICU.   The staff analyze Alysha's blood every morning to see how her kidneys are functioning and determine if she requires dialysis. Today the blood work shows that the kidneys are sub-optimally working to filter her blood, but they are improving.  At this time dialysis isn't needed.  From her blood work they also determine if she needs a blood transfusion. No blood transfusion is required today either.  She is still battling a lung infection but she seems to be winning that battle with the help of some antibiotics.

Alysha update August 24/12
One month anniversary in St. Michael's Hospital
      Alysha was back on track this morning as far as her responsiveness to her visitors with eye contact and smiles and kisses and duck-face. (I fear Abby initiated this pop-culture phenomena that seems to now be in Alysha's small repertoire of on-demand movements.)
      This afternoon Alysha demonstrated huge improvements.  A nurse requested Alysha squeeze each of her hands, wiggle her toes and give a thumbs-up which she did!!!!  She asked Alysha to indicate where her mom was. Alysha looked left and right and all around the room but wouldn't look at Lisa. She then shrugged her shoulders as if she didn't know.  In a stern but joking voice, Lisa said, "ALYSHA ROSE SMITH - you know where I am," and Alysha's face lit up with a large mischevious smile.  She has the mental capacity to play coy with her mother and this is being seen as a good thing. When you put chapstick on Alysha's lips she rubs her lips together to spread it around and today she sucked on a sponge and swallowed some of the water.
      The elevated white blood cell count that was noted on the 22nd has in fact manifested itself as a lung infection. For those of you keeping track, that is 3 lung infections so far.  Alysha has a strong cough and for the most part can cough up the extra fluid generated by the infection on her own without much additional suctioning. The anticipated meeting with a doctor to review the code blue didn't happen today.  The doctor that was supposed to speak to the family has just returned from holidays and the family debriefing isn't a priority item for him today.
      Today marks the one month anniversary of Alysha's admission to the hospital for a tummy tuck on July 24/12.  It has been an aweful, terrifying, heart breaking, exhausting month.  What an incredible family Alysha has;  patient, tenacious, optimistic, dedicated, and committed to Alysha and each other.  The family is fuelled by love and won't give up on Alysha or each other. To everyone who has been following Alysha's recovery, thank you for your well wishes, thoughts and prayers.  Your ongoing support is appreciated.

Alysha update August 23/12
Meeting with the plastic surgeon.
      Today started off slowly for Alysha.  The last we knew, Alysha's kidneys were showing a decline in their filtering capacity.  Nothing was said to the family that would indicate that this decline in kidney function has changed. Alysha remained unresponsive for most of the morning which was heart breaking for the family who had previously been seeing slight daily improvements in Alysha's condition.  Later in the afternoon, Ron reported that Alysha smiled for him and did "duck face."      
      Ron, Lisa and Rich had a meeting with the plastic surgeon who performed the tummy tuck 4.5 weeks ago.  The meeting was set up to address the events during and preceding the 3 cardiac arrests on July 25th.  Although the family also have questions relating to the most recent code blue, the meeting today had the limited scope of addressing the happenings related to the plastic surgeon alone.  Previous meetings have also had a limited scope of information relating to the professional who was speaking with us. We generated a number of questions for each meeting and the staff and physicians answered them relating to their personal experience with Alysha.  No one ever brings Alysha's medical chart to the meetings. Sometimes the answers don't match with answers we received previously from another staff member.  For example in yesterday's meeting they talked about the first cardiac arrest being the longest in duration while in a previous meeting we were told the 2nd arrest was the longest. We are finding that the answers to our questions just generate more questions. The family is in need of a multidisciplinary, full debrief of all the events and care to this date.  We need to meet with a team of people who can walk us through this medical quagmire from the minute Alysha entered the hospital on July 24th until the present day.
      The plastic surgeon reiterated the information he gave us on the first day that the surgery itself was absolutely uncomplicated.  He talked about seeing Alysha after the surgery and speaking to her and watching her move about her room. He also told us that they don't have confirmation about what caused Alysha to have the 3 cardiac arrests.  He told us that Alysha's chart is being reviewed with a fine-toothed comb as part of the hospital's risk-management program.  He said they were looking into all possibilities including human error and gave an example (hypothetical?) of a medication error involving too much morphine.
      Another meeting is set up for August 24th on the one-month anniversary of Alysha's experiences at St. Michael's.  This meeting is to address the code blue on the 22nd.

Alysha update August 22/12
Code Blue
     Alysha was moved out of the ICU last night at 11:00pm to a private room.  The care arrangement included 1 nurse responsible for a number of patients with a "sitter," assigned to Alysha.  The sitter's job was to observe Alysha and inform the nurse if there were any problems.  The role of this person was not to touch or provide physical care for Alysha.  From our understanding, at 5:30 this morning Alysha choked and was suffocating because of secretions blocking her breathing tube, (perhaps her breathing tube had not been suctioned/ cleared properly). They called a code blue and had to manually breath for her (bagging).  They tell us that her heart never stopped and she required respiratory support only.  Alysha is now back in the ICU with one-to-one nursing (one nurse per patient).  The family is very frustrated by the apparent lack of appropriate coordinated care for Alysha last night.  Lisa is so frustrated with the events that took place because she could and would have stayed with Alysha through that and any night where vigilant care was/is needed. To make matters worse the code blue happened at 5:30 and the family wasn't notified until 9:30.  Lisa went in to see Alysha and her once stable blood pressure and heart rate are through the roof.  She is in restraints and her face is bruised and swollen where it looks like she hit her head on the side of the bed. Her white blood cell count is on the rise and we are suspecting another infection.
      The doctors informed Lisa and Ron briefly about what happened but the family has many more questions about this newest setback. The Doctors were unavailable for a full debriefing.
      We are sickened by what this might mean for Alysha's recovery.  How much more can her body take before she can't possibly recover? What has this incident done to Alysha's long term recovery and potential? Anger and disappointment, fear and helplessness!!

Alysha update August 21/12
Alysha moves out of the ICU.
      Alysha is starting off week #5 with a move out of the intensive care unit into a private room tonight.  She has been breathing on her own for a few days. The staff bathed and washed her hair before her big move. Her kidneys seem to be improving quickly at their job of filtering the blood. The staff are so optimistic about her kidney function that they removed the dialysis line from Alysha's body.  Clearly they are not expecting to have to use it again. Alysha will be moving to a floor higher in altitude than the 4th floor she is presently on in the ICU. Movin - on - up.

A Beautiful Smile

The Road to Recovery - week 4

We shall draw from the heart of suffering itself the means of inspiration and survival.  (Winston Churchill)

Alysha update August 20/12
Duck Face
      Abigail, Zoe and I headed to Toronto to see Alysha today. Zoe visited with Aunty Lisa and Rich and Abigail and I headed in to see Alysha.  Alysha was incredibly relaxed and peaceful.  She opened her eyes a bit but looked tired and didn't seem to focus on much initially.  Abigail yippy-yapped about teenager things, and it seemed like Alysha wasn't really listening to any of it.  Finally Abigail got talking about her phone and all the funny pictures of her and Alysha making "Duck Face." (Duck face is a pejorative term for a facial expression made by pressing one's lips together into the shape of a ducks bill.)  Almost instantly after hearing the word duck-face...Alysha made the two-lipped pout herself and held it there to be sure we saw her.  Abby and I fussed over the facial expression and she gave us a smile.  A lips-together, small, contented smile that was such a familiar feature on Alysha's face prior to this medical nightmare.  Alysha's well timed performance of duck-face and then her familiar smile was proof to us that within that broken body is our Alysha who is working so hard to heal herself from the inside out.

Duck Face

       Alysha update August 19/12
The ventilator is packed up and taken away.
      Alysha has been breathing on her own since 6:30 am yesterday (Sat Aug 18th).  The staff are confident enough that Alysha will continue to breath on her own that they have packed up the ventilator and moved it out of Alysha's cubicle in the ICU.
      Alysha has been a bit restless today.  She has been working at removing some of the tubes and lines attached to her with some success.  There was minimal time for Alysha to celebrate her triumphs before the staff replaced/ re-attached the supports that Alysha worked so hard to detach.
      Ron, Carolyn, Lisa, Rich and Aashish visited Alysha today.


Alysha update August 18/12
A well earned day of rest
      Alysha has been breathing on her own since 6:30 am.  She hasn't received any medications today.  Throughout the day she remained relaxed and her heart rate and blood pressure were stable. Alysha earned this day of rest.  She slept on and off and kept her eyes closed most of the day.  She opened them periodically to look directly at her visitors as if to check that they were still there and then she closed them and kept resting.
      Visitors today included Ron, Lisa, Rich, Jason, Chrissy and Aashish.

Alysha update August 17/12
15 consecutive hours off the ventilator
     Alysha has been working on strengthening her breathing muscles.  All her hard work is paying off. She spent 15 hours off the ventilation machine. It is amazing how quickly her breathing endurance has improved. Alysha also had dialysis today.  They considered not doing dialysis today and seeing if her kidneys would do their job of filtering but since dialysis doesn't happen on the weekend it would have been 3 or more days between treatments, so the decision was made to have dialysis today.
     Today Alysha got feisty with a nurse who was trying to suction her airway. Apparently Alysha opened her eyes wide, glared at the nurse and reached her arm out to grab the woman.  After seeing how angry Alysha's face looked, the nurse said, "Oh, she does have an expressive face."
      I have another story that further supports my theory of Alysha purposely withholding her smiles from her mom.  After another day of no smiles for her mother, Lisa finally said, "OK Alysha that's enough, smile for Mom, I have watched you smile for everyone else, I want you to smile for me." Alysha's previously expressionless face broke into a wide smile.  Lisa said it looked like Alysha would have laughed out loud if she could.
     Visitors today included Yvette, Lisa, Rich and Justin.


Alysha update August 16/12
8 consecutive hours off the ventilator
     Today Alysha spent more time sitting in a chair and Lisa finally made it through all of her hair tangles. Alysha was off the mechanical ventilator for 8 consecutive hours today.  The staff thought she could have lasted even longer but they didn't want to tire her out. 
     All day Alysha was withholding her smiles from her mother as if on purpose.  One piece of evidence that supports this withholding theory involves Auntie Chrissy. After countless unmet requests for Alysha to smile for her mother,  Alysha greeted her Auntie Chrissy with a huge smile - beaming from ear to ear. 
     The family is a bit frustrated by the fact that the staff continue to give Alysha small doses of a drug - Dilaudid when they think she is in pain.  Although this drug is commonly used in patients such as Alysha - it seems to cause Alysha to become more agitated.  This drug was used again today and once again Alysha appeared more restless throughout the late afternoon. 
     Visitors today included Lisa, Rich, Justin, Aashish, Chrissy & Jason.

Alysha update August 15/12
Alysha smiles for her dad.
     The day started with Alysha giving her dad (Ron) a huge smile.      
     Today Lisa, Rich, Ron and I (Marcia) met with an ICU doctor who was involved with the resuscitations and care for Alysha since the first day of her cardiac arrests.  We handed him a full page of questions we have been generating over the past 3 weeks.  He addressed all of our questions, cleared up some misunderstandings, gave us a lot of information and told us he would get back to us regarding some of the questions he didn't have the answers to. He was clear and concise when talking about the medical procedures and tests and medications Alysha has encountered over the past 3 weeks.  He spoke in sweeping generalisations with regards to the prognosis. He said, "Do I think Alysha will ever be the girl she used to be?....No, Do we know now what her potential will be?....No, Do we know when she will reach her full potential?....No." 
     Today, Alysha's eyes were wide open. She smiled and cried and turned her eyes and head to look at visitors on request. She was very relaxed until she saw or heard the dialysis machine come to her bedside.  Then our previously subdued Alysha began reaching and twisting and kicking with her legs in such a way as it looked like she was trying to escape off the side of the bed away from the dialysis machine. Later, when the dialysis machine was doing it's job Alysha looked agitated and uncomfortable.  We suspect she isn't a fan of dialysis. She also sat in a chair today and had 4 straight hours off the ventilator. The four consecutive hours exhausted her and she dozed on and off through the afternoon.
     Visitors today included Ron, Lisa, Rich, Marcia, Michelle, Jeanne, Jason and Aashish.  Lisa went into work today to offer some much needed help in her department. Justin has been working with uncle John for the past few days. He shares his mom's strong work ethic. Ron has reluctantly returned to work this week, with plans to see his daughter as often as possible. Abby sent down some lasagna and soup that she made for the family. Brycen, Aarren, Jayden, Noah, Jacob and Zoe all sent their love.

King Cousins

    

Alysha update August 14/12
Off the ventilator for 1/4 of the day. 
     Alysha was sitting up in a chair today again.  Lisa worked on her hair for the 3rd straight day and made some more progress with the tangles at the back of her head.  Alysha was breathing on her own for 6 hours.  She was off the ventilator twice for 3 hours at a time. Alysha looks very content again today.  They have given her some medication to relax her.  They have removed the restraints on Alysha's arms.  The restraints have been used for the past 5 - 6 days when Alysha was flailing her arms about and was at risk of ripping out her tubes and lines.  Alysha was tracking objects and people with her eyes today.
     Visitors today were Lisa, Rich and Aashish. 

Kieran, Rich, Alysha, Lisa & Justin

The Road to Recovery - week 3

Dreams are renewable. No matter what our age or condition, there are still untapped possibilities within us and new beauty waiting to be born.

Alysha update August 13/12
What a difference dialysis makes.
     Today during the day Alysha seemed a little more agitated than yesterday. She occasionally opened her left eye, was minimally responsive and was back to making more repetitive movements.  They had her sitting in a chair for the second time today.  Lisa made a second attempt at taming Alysha's hair.  Her hair needs some Intensive-Care and Lisa is up for the challenge.
     Alysha was on dialysis this afternoon. After dialysis Alysha was a different person.  She was more responsive and opened both of her eyes wide.  There seems to be a trend with regards to Alysha improving after dialysis. We are looking forward to a time when the work of the dialysis machine can once again be accomplished by Alysha's kidneys.  Her kidneys are producing a good volume of urine but they still aren't filtering the blood effectively.  Alysha's supplemental oxygen is at 40%.  The effort of breathing comes 90% from Alysha with the ventilator kicking in the last 10%.  This is an improvement as the staff work to wean Alysha off the mechanical ventilator.  
     Visitors today were Lisa and Rich alone for most of the day and Yvette (Memere) and Aashish came this evening. Lisa and Rich enjoyed spending extra time with Alysha today.

Alysha update August 12/12
Calm, Peaceful, Relaxed, Responsive.
       Finally, some good news!! Alysha no longer has a fever.  She was calm, peaceful, relaxed and responsive today. She no longer looks agitated or in pain.  The repetitive movements are only happening occasionally. Alysha opened her eyes and looked at all her visitors today. She also smiled at appropriate moments in response to visitors and conversations. Quote from Lisa, "when she looked at you it didn't seem like she was looking through you it looked like she was looking at you." This has been a welcomed change as Alysha has been pretty much non-responsive for over a week now. The family is again charged with renewed optimism for Alysha's recovery.  Lisa (mom and hair dresser) was trying to work with Alysha's hair as the back of it has become a tangled mess.  Lisa worked on it with dry shampoo and leave in conditioner and tried to work out some of the tatts until Alysha got mad. Lisa could tell Alysha was annoyed when Alysha tipped her head forward and scowled at Lisa.
      Visitors today included Jeanne, Michelle, Justin, Aashish, Debbie, Robyn, Scott (Lisa's cousin), Ron, Carolyn, Rich and Lisa

Alysha update August 11/12
     Alysha's fever is down today with the help of a cooling blanket. She seems less agitated. She has a new sequence of movements that includes turning her head to the left 3 times and curling both hands (the way you or I would) and then resting for a minute or longer and repeating the movements again. Lisa and Rich have been encouraging Alysha to relax her arms when they are in and they think that might be why she has relaxed her arm movements.  Lisa also reports that Alysha has been opening her left eye and looking right at Lisa when she is in to visit.  Dialysis is being done today, and they are weaning Alysha off pain medication.  They are also giving Alysha 1 cup of water every 6 hours through her feeding tube. The medication expert didn't come today.
     Visitors today were Paul, Denise, Kahlan, Alex, Aashish, Carolyn, Ron, Lisa and Rich. 

Alysha update August 10/12
Questions, Questions, Questions.
     Alysha remains pretty much the same. Her kidneys are turning out a good volume of urine but they don't seem to be filtering very well.  Alysha has developed a fever in response to some of her infections. Lisa reports that the repetitive cycle of movements involving Alysha's arms and legs has decreased a bit but she is continuing to stiffen her whole body periodically.  Alysha remains unresponsive.
     The family was told that medication experts will be in on the 11th to try and coordinate her medications. When communicating with staff, the family seem to be getting contradicting, or inconsistent information. Sometimes it seems as though Alysha's care providers aren't very clear or coordinated regarding their understanding of her history, her medications, and her care plan. 
     Most of the family have questions about what is happening with Alysha.  We have questions about what happened the first day of her cardiac arrests, about her non-responsiveness and repetitive movement, about her appearance of being uncomfortable or frustrated, about her medications and their side effects, about the normal sequence of recovery from coma/ brain trauma and how all of this relates to what we are seeing in our precious Alysha.
     Visitors for the day were Lisa, Rich, Ron, Carolyn and Aashish.

Alysha update August 9/12
Continuous repetitive movements
     Alysha's kidneys are producing 75-100 ml of urine an hour.  The target amount is 500ml an hour.  Alysha stayed in bed and on mechanical ventilation today.  She also kept her eyes closed.  Alysha has been cycling through a sequence of repetitive movements every 1.5 minutes. The sequence involves moving her head, right and left arms and right and left legs for 30 seconds, then laying peacefully still for 1 minute, and then repeating the cycle of movement.  She has been cycling through these movements all day, and all night for the past 2 days.  She doesn't stop the movements to sleep and Lisa thinks she looks exhausted.  It doesn't seem like anything can interrupt these movements, not visitors or medication.  The Doctor reports that her lungs are much better than yesterday and  her supplimental oxygen is down to 50%.
     Visitors today included Lisa, Rich, Ron and Aashish.


Alysha update August 8/12
Another lung infection.
     Alysha is battling another lung infection.  They are suctioning a lot of blood and fluid out of her lungs.  They have given her blood transfusions yesterday and today. No breathing or sitting practice today,  just recovering from another infection.
     Visitors today included Andrea, Aashish, Jeanne, Michelle, Lisa, Rich, Justin and Ron.

Nana King & Alysha

Alysha update August 7/12
Alysha takes a seat. 
     Today they moved Alysha into a chair so that she could practice sitting up.  Ron got to witness this refreshing change of position.
     The day started with Lisa laying out some of her concerns about Alysha's care to the nurse working with Alysha.  She wanted them to know that the family's priority is Alysha's comfort and freedom from pain. "Give the girl a break, she's been through enough already." There is a thought that there has been a priority by some staff to wean Alysha off pain medication so the extent of her brain function can be evaluated. This has lead to pain and discomfort for Alysha which the family feels has further delayed what we can see of Alysha's mental/ cognitive (brain) recovery.  Lisa's argument is that whether you evaluate it today or 2 weeks from now, the extent of the challenges she will face isn't going to change.
     Visitors to the hospital today included Ron, Yvette (Alysha's Memere), Aashish, Lisa, Rich and Andrea (friend of Alysha's).

Andrea and Alysha

The Road to Recovery - week 2

Your present circumstances don't determine where you can go; they merely determine where you start.

Alysha update August 6/12

Restless.

     Alysha had some time again today off the mechanical ventilator for breathing practice. This is part of a planned breathing work-out, which is part of her care plan. Over the past 3 days Alysha has had additional breathing workouts when the mechanical ventilation tube accidentally detaches from the airway in her neck. Apparently the tube fits loosely over the airway in her neck and easily detaches when Alysha moves her head.  It has been unnerving for family to watch the ventilator accidentally detach from Alysha. The medical staff have worked to tighten up the connection between the ventilator and Alysha.  

     Alysha was restless last night and today. According to Lisa and Rich she is keeping her eyes closed but she is moving and squirming a lot, and her face looks like she is in pain.  The family has some concerns that Alysha isn't being appropriately medicated to relieve her post surgical pain and the pain and discomfort related to her resuscitation (2 wks ago), the recent tracheotomy and countless procedures, suctioning, catheters, IV lines, dialysis and physiotherapy.  

     They attempted dialysis today but had to discontinue it after 2 hours as they were having trouble with her blood clotting. Dialysis seems to be occurring infrequently and the family has concerns about this as well. 

     Visitors today included, Carolyn, Ron, Lisa, Rich, Jason and Aashish. Grandpa Wilbert and Grandma Pierrette had one last visit with Alysha before they flew back home to New Brunswick today. They plan to return in the fall to see their grand-daughter. Justin, Lisa and Rich slept at home last night for the first time in almost 2 weeks. Since Alysha's status seems to be more stable, Justin stayed at home today to recharge and reconnect with his life and responsibilities. He has been a devoted brother, and a reliable support for Alysha, staying by her side every day since her surgery while her life was so fragile and unstable.

Justin & Alysha

Alysha update August 5/12
Off mechanical ventilation for practice.

Today, Alysha's condition remained stable. They took Alysha off mechanical ventilation this afternoon for 2 hours as practice to build up her breathing strength. 

This morning when Auntie Michelle and Nan (Jeanne) visited her she showed some emotion. While Michelle and Jeanne were talking, Alysha started a soundless (because of the tracheotomy) sobbing, with chest heaving and tears. Later, during a visit with Justin, he asked her to lean forward so he could kiss her on the cheek and she did tip her head off the pillow to receive the kiss. Justin also requested she open her eyes and look at him, - which she did and then he and aunty shell asked her to look at Aunty and she did look in that direction.  The medical staff suggested that the movements and emotion may have been involuntary, and random but the family feel strongly that Alysha was communicating with them through movement and emotion.

Visitors today include Grandpa Wilbert and Grandma Pierrette, Auntie Michelle and Nana (Jeanne), Lisa's cousin Vanessa and her husband Ryan, and Rich's uncle Chris and aunt Cindy. Aashish, Ron, Carolyn, Justin, Lisa and Rich.

Alysha and Grandpa Wilbert

Alysha update August 4/12

A big smile

This morning Justin and Lisa went in to see Alysha. Justin greeted Alysha and asked her to open her eyes which she didn't do but she did give him a big smile instead. She later gave a smile to Chrissy and Jason. Other than these smiles Alysha was really non-responsive today.

Alysha is dealing presently with an infection that is affecting her entire body. They have taken all the IV's and catheters out because these locations are particularly susceptible to the infection. She is very medicated to keep her comfortable as she recovers from yesterday's procedures and the infection from today. Visitors and the staff working directly with Alysha are wearing infection control gowns and gloves.

Visitors today included Rich's Friend Edd, Jay and Chrissy, Ron and Carolyn, Wilbert and Pierrette.

Alysha update August 3/12

Tracheotomy and PICC line.

Today, Alysha's condition has been stable. She has been opening her eyes a little bit for much of the afternoon, except for when uncle Jason talks to her and then she opens them a lot. Alysha's blood pressure has been, "behaving," today.

This morning they performed a tracheotomy for Alysha at her bedside in the ICU.  A tracheotomy is a surgical procedure which consists of making a cut on the front of the neck, and opening a direct airway through an incision in the trachea (wind pipe).  This is a more comfortable way to provide ongoing mechanical ventilation for Alysha. Now when she turns her head the movement won't trigger her gag reflex. Lisa reports that Alysha looks so much more comfortable now. They also inserted a PICC line. A PICC line is a Peripherally Inserted Central Catheter that is a form of intravenous access that can be used for a prolonged period of time. With the PICC line in place, they were able to remove the catheter from the infected site on her neck and one of the IV lines in her arm. She is also undergoing dialysis today as her kidneys are not producing much urine. Alysha still has a tube in her nose that goes to her stomach (nasogastric tube) through which the staff can feed her.

A special visitor flew in today from New Brunswick. Grandpa Wilbert's wife Grandma Pierrette. Encouraged by Alysha's stable condition and supported by the nursing staff, Lisa and Rich are going to try spending the night out of the hospital at Jason and Chrissy's house in Brampton. Justin has been sleeping at a hotel in Toronto with his Dad and Grampa for the past few days since he dislocated his shoulder trying to sleep on chairs in the waiting room.

Alysha update August 2/12

A day of setbacks

Today Alysha has developed a lung infection. The infection is presently limited to the lower portion of her left lung. There is also an intervenous site on her neck that has a localized infection. She is on medication for both of these infections. Her oxygen is back up to 70% and the medical staff are needing to suction her lungs more frequently. Alysha was restless and looked either uncomfortable or frustrated. The doctors sedated her with medicine so she is once again non-responsive. In an effort to make Alysha more comfortable and reduce the risk of further infection, they are considering doing a tracheotomy in the next couple of days.

A few days ago we were excited when the physiotherapist requested Alysha squeeze her hand and she did so.  Today however, the family was told that Alysha hasn't progressed as they would have expected. At this point Alysha should be able to raise two fingers in response to a request to do so. An inability to respond to requests such as these has the doctors thinking there is quite a lot of brain damage. We wait and see and we hope for the best.

Alysha update August 1/12

High Blood pressure

Alysha's blood pressure has continued to be abnormally high. The doctors have given her medication to lower her blood pressure. Family and medical staff have been trying to reduce stimulation for Alysha. When we went to see her we just held her hand. We didn't rub her arm or ask her to open her eyes or make any movements for us. Alysha was continuing to open her eyes and turn her head in the direction of her visitors. Unfortunately, when she turns her head, her breathing tube triggers her gag reflex and the resultant gagging looks uncomfortable for her. Visitors to the hospital today included Michelle, Jeanne, Paul, Alex, Kahlan, Claudette, Pauline, Alyssa, Debbie, Robyn, and Debbie's mom, Abby and I.   The regulars at the hospital are Lisa, Rich, Justin, Ron, Wilbert and Aashish.

Abigail, Alysha & Kahlan 

Alysha update July 31/12  5:00 pm

No longer in a coma!

This afternoon Lisa was told that Alysha is officially no longer in a coma. Over the course of the day, Alysha has been opening her eyes and making many purposful/ meaningful movements. The most important one was an attempt by Alysha to reach and remove her breathing tube with her left arm. Our determined girl was sweating and red in the face with the effort of her quest to remove the tube. The tube however needs to stay in place until we know she can breathe continuously on her own. She is not in a coma any more however she is not ready to fully wake up. 

A physical therapist was in today and worked with Alysha. Alysha made many attempts to open her eyes. When tested with a light, she can follow or track the light with her eyes. Also, her pupils of both eyes respond to light by dilating and constricting appropriately. Alysha purposefully squeezed her hand in response to the therapist's request for her to do so. She is able to follow these verbal instructions, so we are assuming she is hearing and understanding language and can translate that into movement.  Her kidneys are continuing to produce a little urine. She is on dialysis again today. After an exhausting day of work with the therapist, Alysha's blood pressure escalated to a point where they gave her medications to decrease it back to a normal level. 

"Hope is the thing with feathers that perches in the soul." (Emily Dickinson)

The Road to Recovery - week 1

The soul would have no rainbow had the eyes no tears.

Alysha update July 30/12  6:30 pm

Stay positive - Stay strong.

Today Alysha tipped her head forward and opened her eyes for 20 seconds, looking first at her Uncle Jason and then at her grampa Wilbert.  This caused much excitement among the family and visitors. Another piece of good news is that Alysha's kidneys are turning out a small amount of urine again. She is having dialysis again today.  

Today the Doctor reviewed some recovery possibilities with Lisa, Rich, Ron, Wilbert, Jason and Justin. The MRI shows that one part of Alysha's brain that is affected is the part that controls her vision.  They think Alysha can see, they are just not sure how much she can see. It is possible her motor control is affected and she will need to re-learn the basic human functions as well as learning how to walk and talk. If she still needs ongoing mechanical ventilation support, next week they are considering a tracheotomy. When the doctors talk about Alysha's recovery they use vague expressions like, "for a long time," and  "for a while," but they won't define what units of time that expression might refer to. Lisa's message to everyone is stay positive - stay strong. 

Alysha update July 30/12 at 8:00 am

MRI

Report from Lisa this morning....Alysha had an MRI last night at midnight. It went well and Alysha had a good night.  Alysha's supplemental oxygen by ventilator is back up to 40%.  The nurses say that there has been movement but not on command.  They think they will be doing dialysis today but that won't be confirmed until later this morning.

Alysha update July 29/12 at 8:00 pm

More Movement.

Many more reports of movement today. Alysha is wiggling her lips for Lisa and various visitors and she tried to open her eyes for Rich. Lisa has been told to speak more assertively to Alysha to be rewarded with movement. If you talk to her in a soft, soothing, lilty voice you are not guaranteed a response. Apparently she just gets mad when Justin is in and she won't move anything for him...Ahh siblings - some things never change!  Supplemental oxygen by the ventilator is down to 30 percent. Her kidneys are still not working today but the medical staff maintain that the kidneys will likely repair themselves. 

Visitors today included Jeanne, Michelle, Ron's dad. Eric and Cathy, Paul and Denise. Aashish, Jason and Chrissy and Abby in addition to the usual, Lisa, Rich, Justin and Ron. Visitation was limited today because of other patients in the ICU. Almost everyone who came down got to see Alysha. 

Since Wednesday July 25th, Alysha's bold, assertive and frugal family have moved into the surgical ICU waiting room - literally. The small bar-fridge is filled with their food and they brought in an air mattress to sleep on.  Momma Bear has no intention of leaving her baby.

Alysha update July 29/12 at 9:00 am

Clean Blood - Fresh Start: 

Report from Lisa this morning: "Good morning. Alysha had a good night. Her hemoglobin and blood pressure stayed in a good range. No dialysis today, just rest."

Alysha update July 28/12 11:00 pm

Dialysis

      Another upswing in Alysha's condition. They were able to initiate the dialysis treatments today. She was on dialysis for 8 hours and the treatment yielded 3 Litres of fluid and waste. The Dr.'s have told Lisa it is very possible that Alysha's kidney function will return. By late afternoon Alysha was moving her body parts again. Her fingers, toes and lips. It sounds like she tried to kick Rich. The Doctor told Lisa he was able to get Alysha to fully open her eyes after annoying her with auditory and physical stimuli. She is still being mechanically ventilated with 45% oxygen.

      John went in to see Alysha. He said she looked "one thousand times better," than when he last saw her on Wednesday. She has a beautiful pink in her cheeks and the incredible facial swelling is now much reduced, especially after the dialysis. There is a plan for 8 more hours of dialysis tomorrow as well.

      Visitors today included John, Abby, Jason, Michelle, Jeanne, Aashish, and Debbie and her mom and Ron's Dad. They managed to coax Lisa, Rich and Justin away from the hospital to Jason and Chrissy's house with the promise of a shower and a home-cooked meal that Abby and her friends prepared. 

Alysha update July 28/12 7:45 am

Riding the recovery roller-coaster. 

      Alysha didn't have a great night last night. Now her kidneys are not working at all. Also, she is now in a real coma (one that is not forced by medicines purposefully by the Doctors). Dialysis is now a necessity and it will be the medical team's first priority to get that initiated this morning. On a positive note, they were able to wean Alysha off the medication that was increasing her blood pressure to normal levels. If she had remained reliant on those medications, dialysis would have been a slow process over the course of the day.  Instead, Lisa tells me that they will be able to more quickly clean Alysha's blood. Lisa told me that she is looking forward to Dialysis. "They need to get, all that crud (the medications and byproducts from the past 3 days) out of her blood". There is hope that after her blood has been cleaned, her recovery will continue forward like yesterday when Alysha broke through and showed us her will to live and her fight her way back.  Lisa is hanging in there but misses the inspiring responsive actions of Alysha's from yesterday.

      Jason was there again for the day yesterday, and Justin, Lisa, Rich and Ron have remained down in the city with Alysha since Wednesday. I think other visitors yesterday included Ron's mom and dad and friend Eric. Last night Justin dislocated his shoulder trying to sleep on the chairs - couch in the waiting/family room. Lisa and Rich were able to get it back in themselves but considered a trip to the ER for some conveniently located medical help.

Mother and Daughter

Alysha update July 27/12 late evening

Movement!

      There is some cause for celebration today as Alysha started to move her body - toes, legs, arms and fluttering her eyes in response to auditory and tactile stimuli. Her body has been warmed back up to normal body temperature. She is still on the ventilator. Her eyes remain closed. They have stopped giving her drugs that force her into the medicated coma. She was stable enough to have a CT scan today. Lisa said the CT scan showed a bit of swelling, "at the top of her brain." Lying flat for the CT scan caused her lungs to fill up with  fluid that had to be frequently suctioned out. Yesterday Alysha's kidneys were working at 25 percent, today they are working at less. Alysha is producing only 5 mls of urine an hour. They want her to be producing 50 ml per hour.  Lisa said, "Her kidneys are failing" and the Doctors are wanting to start Dialysis but in order to initiate dialysis they need to do a procedure that requires Alysha's body to lay flat and she still seems to de-stabilize in that position. 

      The story of Alysha's first movements goes something like this. Lisa went in to see her, told her the usual, that she was loved, and then told Alysha that she (Lisa)  was going to massage her feet since Alysha's circulation in her feet isn't great. Just after Lisa grabbed her feet Alysha curled her toes in. Jason was there to witness it and confirmed that Lisa wasn't just seeing things. 

      The family is celebrating this small achievement with a renewed optimism.

      It has been a big day for Alysha, and LIsa tells me that Alysha is exhausted. The plan is to let her rest through the night. Staff aren't planning on moving her or stimulating her in any way so that she can rest up.

Alysha update  July 27/12 7:00 am.

      I received a text from Lisa this morning 

"Alysha had a good night last night. They cleaned her up a bit but she didn't like it. I told them she just wanted to sleep and didn't want to be bugged."

      I don't have much more information at this time. She is still on mechanical ventilation. I am assuming she is still comatose and unresponsive. I will update you all tonight.

Alysha update July 26/12 at 7:00 pm.
Kidneys are failing

      Alysha is still on life support and in a forced coma.  Here is the good news. They have decreased her supplemental oxygen to 50%. They are starting to warm her up (out of the medical hypothermia). 

      Lisa was told something about Alysha's liver and kidneys but she isn't certain of the information.  I think her liver is fine but her kidneys are only working at 25%. She had an EEG today that ruled out seizure activity as she had some rhythmic eye movement. EEG's can also determine if someone is brain dead and the Doctors didn't report any results such as that to Lisa so I am assuming that is a good thing. They wanted to send Alysha for an MRI and CT scan today but in order to have these tests she has to lay flat on her back. When they move Alysha into this position her heart rate, blood pressure and oxygen saturation become unstable so we will wait for another day for these tests. An x-ray showed her lungs appear slightly better than yesterday - less fluid.

Alysha update July 26/12 at 8:00am
Alysha makes it through the night.

      Alysha Made it through the night. The doctors said she had a good night. Good is relative of course. Still on life support and comatose. 

      Lisa's text at 4 am  was this..... 

"I just went in to see her and she has had a good night ."

      The doctors re-affirmed that same "good night", message with Ron a few minutes ago.

Now we hope and pray for a steady and full recovery.

Alysha July 25/12   Post-Surgical Disaster.

Our sweet girl Alysha, 21 years old, had cosmetic surgery (tummy tuck) yesterday July 24th at St. Michael's hospital to remove extra skin left over on her abdomen after she lost 150 pounds.  Two years ago, Alysha had brain surgery to remove a tumour growing on her pituitary gland. The brain tumour had caused Alysha to gain a lot of extra weight. After the tumour was removed, Alysha rapidly lost 150 lbs and she was left with too much loose and baggy skin around her abdomen.   

Alysha Just Prior to Surgery

Alysha was awake and talking last night after her surgery. Between midnight and 3:00 this morning her previously normal recovery went badly. She is unconscious, unresponsive and on a ventilator and receiving multiple units / pints of blood. Her heart has stopped 3 times, the longest was for 20 minutes. She doesn't seem to be responding to any treatments. And the doctors are flummoxed.

Update: The surgeon who performed the tummy tuck yesterday cancelled all his surgeries today to be with Alysha. The surgeon from yesterday said the surgery was completely straightforward and uncomplicated No one seems to understand what has happened.

Update: The doctors updated Lisa and Ron and they are suspecting a fat embolism but they aren't sure. Alysha is in a medicated forced coma. There are teams of doctors in her room scratching their heads. 

Update: They told Lisa and Ron that they were considering transferring Alysha to Toronto General Hospital but they are worried that they won't be able to keep Alysha alive through the trip. 

Update: A Dr came in and had Lisa and Ron sign for consent for the use of blood and blood products. They explained why they were considering the transport to the General.  They can't get Alysha's Oxygen  saturation above 80% except for brief periods. Normal Oxygen saturation is over 90%.  They are considering a life-support option where they bypass Alysha's lungs and a machine oxygenates her blood. They are worried that Alysha's lungs aren't in good shape. They can do the lung bypass care at St. Michael's but they specialize in that kind of care at Toronto General and there are a few more care options at the General.  The medical team is trialling lifting Alysha to see how her body responds to the movement that would be encountered during the transfer.

Update: Lisa and Ron have been burdened with the responsibility of making a tough choice.

1. Stay at St. Michaels where they have maxed out their ability to oxygenate Alysha's blood or

2. Transport to Toronto General where they specialize in the care that Alysha needs, but risk a 50% chance that she will die during the trip.

Update: Alysha's condition improved marginally, so the Dr's have recommended she stay at St. Michaels. Her parents no longer needs to make the decision to transport or not.

Over the course of the day Lisa and Ron have been very generous with the couple of visitation minutes they are allotted each hour to spend time with their daughter. They have sacrificed those precious minutes with their daughter to allow for each family member to spend some time with Alysha.

Alysha is incredibly swollen in her face and neck and chest. Her skin is stretched and has a waxy appearance. She is freezing cold to the touch. She is on a ventilator and except for her chest rising and falling with the breaths from the ventilator she is completely motionless and unresponsive. She is, however,  alive and her condition seems marginally better regarding her blood oxygenation. Keeping her alive and stabilising her are the goals for now.  

Update:  10:00 pm July 25/12. Jason, Chrissy, Michelle, Paul, Denise, Alex, Kahlan, Aashish, John, Abigail and I spent the day at the hospital. Other visitors included Rich's family and Lisa's friend Debbie and daughter Robin. Most of us are leaving for the night and  Lisa, Rich, Ron, Jeanne, Justin, Aashish and Michelle are staying. The doctors are slowly (minimally) reducing Alysha's respiratory support and she seems to be doing ok. Her freezing cold skin is because of a forced hypothermia to decrease stress on all her organs and to decrease her body's need for oxygen. That decreases the workload on her heart and lungs. They may slowly start to warm her up in 24 hours. The warm-up process will take 24 hours and then they will start to ease her slowly out of her medical comma. 

Prayers are welcome as are miracles

Marcia Rowat (Aunty Marcy)

Marcia, Lisa and Alysha