The Road to Recovery - week 11

   Every action in our lives touches on some chord that will vibrate in eternity (Edward Hubbel Chapin)

Alysha update October 8/12
Smiles and laughter from Alysha.
      Alysha had a great night and she was very happy during the day.  The family saw more smiles and laughter from Alysha than they have seen since she was admitted to St. Michael's hospital on July 24.  At one point Rich was trying to help position Alysha by putting his arm around her back and moving her forward.  Something about this action struck Alysha as hilarious and she started cracking-up with laughter.
      Justin, who has been away studying at school in London, came to see his sister today.  He noticed a big change in her since the beginning of September when he last saw her.  Justin's friends Brad and Jacob also stopped in for a visit as did Aunty Shell, Jayden and Nana King.

A Smile

Alysha update October 7/12
Special visitors from out East.
      Alysha had a sleepy Thanksgiving Sunday. She worked through the usual therapies including stretches and flash cards.  She only tolerated being corked for 3 hours.
      Pepere and Pierette, Alysha's grandparents from New Brunswick, returned to Tortonto to see Alysha this Thanksgiving weekend.  When Alysha saw them she started crying.   Ron interpreted Alysha's emotions as, "she was happy to see them and was feeling helpless."  For the first part of their visit Alysha couldn't take her eyes off her guests.

Pepere (Wilbert) and Alysha

Alysha update October 6/12
Alysha spends Thanksgiving weekend with her Dad at St. Mikes
      Alysha was awake all day, she did stretches and flashcards with Ron and Carolyn.  She was corked from 11 am to 7 pm.  The respiratory therapist wanted to keep the cork in for longer but Ron noticed that Alysha was getting agitated so he requested they take the cork out.  The family doesn't want to push her too hard and cause another set-back.
       As a special treat today, Carolyn massaged Alysha's back and neck with a motorized massager.  Alysha appeared to really enjoy this.
      Meanwhile at the Elmvale Fall Fair, fundraising efforts were a huge success.  The family walked along-side a decorated car in the parade, and there was a booth set up in the fairgrounds to raise awareness and sell ribbons, bears and donated baked goods.  We are so appreciative of all the support we continue to receive in the form of well-wishes and inspirational messages.

Alysha update October 5/12
Abby speaks about Alysha at the Elmvale Fall Fair
      Ron reports that Alysha had a sleepy morning.  They corked her tracheostomy at 11:30 am and planned to keep it corked for about 12 hours today.  The physiotherapist worked with Alysha at the side of the bed.  Alysha moved her legs forward and back, and raised her arms and lifted her head when she was asked to.  Ron asked her to look right and left and she did this also.  Ron also worked with Alysha's flash cards.
      The family attended the Elmvale Fall Fair tonight.  During the evening program in the Arena, Abigail and Jayden went up on stage and told the community about what has happened to their cousin Alysha.  Abby made reference to the fact that 5 years ago Alysha stood on that very stage as she competed for a chance to represent her community as the Fall Fair Ambassador. They told the audience about what Alysha has been through in the past 5 years.  Abby went on to explain that she survived brain surgery only to suffer from a complication to a much less risky surgery 2 years later.  Abigail told everyone that our family wants to bring Alysha home and back to the community so that we can help her recover further and prove to everyone that miracles do happen.  She ended by thanking the community for their ongoing support.


Alysha update October 4/12
New Splints.
      Today, they put splints on alysha's hands and forearms to help discourage permanent wrist and hand contractures (see picture below).  
      Lisa and Rich attended a weekly multidisciplinary meeting about Alysha.  The physiotherapist was sharing the wonderful progress she has seen in Alysha this week.  In addition to Alysha's amazing spirit, they are attributing a more appropriate balance of medications to the improvements we have seen in Alysha's motor control.
      After a 2 week reprive from the tracheostomy cork, they re-corked Alysha today.  We are looking forward to progress that will lead to the removal of the tracheostomy.

Alysha's new splints

Alysha update October 3/12
Alysha's mom advocates to protect her daughter's airway.
      Within minutes of arriving at the hospital this morning Lisa knew that something was wrong with Alysha. When Alysha coughed up blood through her tracheostomy cannula, Lisa knew exactly what the problem was.  This only happens when Alysha's airway is deep suctioned repetetively.  Deep suctioning is unnecessary as Alysha has a strong cough and can cough up the mucus that builds up in her airway on her own.  She has been doing it for weeks.  It has been days since she was last deep suctioned. A curious fact is that she is never deep suctioned during the day when the family is there. The suctioning only happens when she is left alone with hospital staff at night.  This procedure causes pain, distress, and damage to Alysha's airway.  It also causes an increase in future lung secretions.

LISA WAS EMPOWERED TO MAKE SOME CHANGES

      Lisa called for an immediate meeting with the nursing unit manager.  She explained that this kind of care was completely unacceptable.  A meeting was set up during the day with an expert in airway management to advise the staff on how best to care for Alysha's airway.  The respiratory therapist told the staff that there is no need for deep suctioning, that Alysha has a strong cough and can get the secretions out herself. Specific orders and instructions have been put in Alysha's chart that the staff are not allowed to deep suction Alysha any more.  They are only allowed to suction within the plastic cannula in her neck and not go beyond it into the vulnerable tissues of her airway.  If the staff believe Alysha needs deep suctioning they are to call a respiratory therapist to assess and do the suctioning if needed.
      As for the rest of Alysha's day... it went well.  She spent some time on the tilt table, and then did some physical and mental therapy exercises with Lisa and Rich.


Alysha update October 2/12
Plans for public awareness and fundraising. 
      Alysha didn't sleep well last night and was tired today.  Unlike other tired days she didn't appear agitated or exhausted.  Lisa flagged down the physiotherapist in the morning for a quick therapy session before Alysha's inevitable afternoon slumber.  They worked with Alysha for half an hour doing physical therapy at the bed-side.  Later Lisa worked with Alysha's flash cards and our tired girl finally fell asleep around 3:30 pm this afternoon.
      Plans are underway for an Elmvale Fall Fair awareness and fundraising campaign.  The fair runs October 5th and 6th.  The following advertisement appeared in the springwater news.  "During the parade and at the Elmvale Fall Fair, there will be a fundraiser for Alysha Smith.  In the Arena, volunteers have arranged for a booth.  There will be a donation box into which you can drop your thoughts, comments and prayers for Alysha.  There will be games, prizes and a bake table."  They are still looking for volunteers to man the table and make baked goods.  Please contact Jen Reid if you are able to help (705) 818-5572 or (705) 322-9274.

Link to information about the Elmvale Fall Fair 2012