The Road To Recovery - Week 22

"Courage is not defined by those who fought and did not fall, but by those who fought, fell and rose again." - Adrienne Rich

Our sweet cherished Alysha Rose Smith is recovering from a post surgical complication that put her into cardiac arrest and into a coma for 7 days.  She emerged from the coma with severe brain damage.  This website was created to update friends and family of Alysha's progress along the road to recovery.  Please join us as we support Alysha on her journey.  (For earlier details, like the history behind this medical nightmare scroll to the bottom of the blog and click "older posts.")

December 21/12
Heading Home for Christmas
     Alysha had a great day in therapy today and headed home for the holidays one day early.  For the next week all the Christmas festivities, visiting, shopping, eating will provide all kinds of therapy for Alysha and her family.

  

December 20/12
Alysha continues to adamantly refuse Botox injections to help with her spastic muscles in her left wrist and arm.  She has been working hard on her arms in therapy.  She now works on a recumbent bike that works her legs and her arms (see picture below).  The therapists offered to support Alysha by holding onto her left hand but Alysha refused their help and went on to do the exercise on her own.  Alysha is eating full servings of food now, so there are no further worries about the feeding tube remaining out.  Below you will see pictures of the recumbent bike, parallel bars for walking, and the arm peddle machine Alysha uses in her physiotherapy sessions.

Alysha on the recumbent bike

Arm Peddle Exerciser

Parallel bars for walking practice. 

     

December 18/12

     Alysha has been pouring out the effort in her therapy sessions.  She is showing so much improvement in standing upright when she is walking.  She has started practicing a new exercise where she walks between two low parallel bars supporting herself with her arms on the bars with one therapist offering support from behind. She has also been practicing climbing up stairs and using the bicycle arm exercise machine. She has had speech therapy sessions with the Therapy dog, where she needs to speak words clearly enough for the dog to respond with the required actions.  Alysha can tell that she is speaking clearly when the dog does as she asks it to.  

The Road to Recovery - Week 21

The race is not always to the swift, but to those who keep on running.

Our sweet cherished Alysha Rose Smith is recovering from a post surgical complication that put her into cardiac arrest and into a coma for 7 days.  She emerged from the coma with severe brain damage.  This website was created to update friends and family of Alysha's progress along the road to recovery.  Please join us as we support Alysha on her journey.  (For earlier details, like the history behind this medical nightmare scroll to the bottom of the blog and click "older posts.")

December 15th.
Fundraising dinner and auction.
     Alysha came home on Friday evening after completing her therapy sessions for the day.  A three night, extra long weekend at home was planned.  She came home a day early so that she could attend a benefit dinner and auction at Georgian College.  Georgian College is the school Alysha was enrolled in prior to her brush with death.   The hours of the benefit (7 pm to 11 pm) were challenging for Alysha as most days she is exhausted and in bed by 5:30 pm.  Lisa brought Alysha home on Friday night so that she could sleep in and have a restful day prior to her big night out on Saturday.  This was Alysha's first evening out since July 24th.  The benefit was attended by some friends and family and it was so nice to see Alysha out at a public event.  Alysha did tire early into the evening event but went on to socialize until about 10:30pm. 

Alysha Dancing

December 13.
Alysha spells the words she can't pronounce clearly.
     Today, Alysha's therapy included Christmas arts and crafts.  Lisa and Alysha made some ornaments together.  Alysha was in charge of holding the glue and Lisa reported that they had "glue everywhere."  It was also Alysha's responsibility to direct Lisa where to place the glued pieces. 
     Alysha's is making a lot of progress with her speaking.  When the situation arises where a word can't be understood by the listener, Alysha spells the word for them. By the way, Alysha's spelling abilities are not deficient in any way.  
     The Doctor was back in today with a recommendation that Alysha accept a therapy option that will reduce the effects of the contracted muscles in her wrists.  The therapy they are suggesting has been made famous for reducing facial lines and wrinkles for women of a certain age.  BOTOX injections.  Alysha has been against this therapy because it involves more needles.  Lisa is going to try to encourage Alysha to consider this therapy more seriously.  It is possible that it may reduce the chance of permanent disfiguring and disabling contractures. I have included a link to a web site that describes the condition of spastic muscles (scroll down to the section Gale Encyclopedia of Children's Health: Spasticity for a comprehensive but simplified read).  I have also included 2 links to information about the medical use of Botox injections for conditions such as Alysha's.

Link: Spastic Muscles definition, treatment

Link: CNN Health - Botox information

Link: Botox article

December 12/12/12

Alysha is progressing rapidly.

     The occupational therapist told Lisa today that she has never had a patient progress as rapidly as Alysha.  She is getting so much stronger every day.  Looking back on Alysha's arrival to the Rehab institute 4 weeks ago she was, "unable to control her spit and was still drooling but now she is drinking from a cup!" 

     Alysha is most challenged by the function of her left arm.  It is very affected by muscular contractures.  Lisa requested that the staff re-visit a therapy technique where Alysha completes a bicycle peddle exercise with her arms.  Alysha has also been fitted for arm splints to strretch out the contractures. 

December 11/12

Alysha can do simple math, and she can do it quickly.

     When Lisa arrived on Tuesday morning Alysha was all upset and agitated.  She was upset because the staff had been in to draw her blood for tests.  Alysha told her mom that she wanted to go home and not be in rehab any more.  She is so tired of being a human pin cushion.  She is tired of all the medical investigations to ensure she is safe and recovering well.

      Alysha is very aware of her anticipated discharge date of January 25th.  Today she was talking to Lisa about this.  She knows that she has over a month to wait to be released home full time.  She also knows that Christmas is quickly approaching and that she will be home for an extended period of time over the holidays.  Lisa was rambling on to Alysha about there being 14 days left until Christmas but noted that Alysha would be coming home 4 days before that, and Alysha immediately offered that that would be ten days from now.  Lisa asked her how she knew that and Alysha simply answered, "subtraction." Lisa continues to be surprised at all the brain function Alysha has maintained.   

The Road to Recovery - Week 20

Believe in yourself and all that you are.  

Know that there is something inside you that is greater than any obstacle. 

Our sweet cherished Alysha Rose Smith is recovering from a post surgical complication that put her into cardiac arrest and into a coma for 7 days.  She emerged from the coma with severe brain damage.  This website was created to update friends and family of Alysha's progress along the road to recovery.  Please join us as we support Alysha on her journey.  (For earlier details, like the history behind this medical nightmare scroll to the bottom of the blog and click "older posts.")

December 10/12
A discharge date is given.
     Accompanied by Jeanne (Nana), Lisa returned Alysha to the rehab center this morning.  There was a multidisciplinary meeting about Alysha that the family was invited to.  The discharge date they are planning on and working toward is January 25th 2013.  Lisa was so excited to hear this news.   They will continue working with Alysha beyond this point as an outpatient, with 2 therapy sessions each week in Toronto.  At the family's urging, the Rehab institute will look into suitable therapies a little closer to home such as with RVH.

December 8th and 9th.
Home for the weekend.
     After a hard week of therapy, Alysha was rewarded with another trip home for the weekend.  This is expected to be the norm now.  Daily therapy sessions from Monday morning until Saturday morning and home on the weekend.
     Lisa continues to make food for Alysha, which Alysha clearly appreciates as she has no problem finishing servings of her mother's home cooking.  Lisa still spends between 5 and 7 days a week in Toronto with Alysha during the day, goes home and makes food for Alysha for the upcoming meals.  Lisa brings her meals down to the rehab center all portioned up and freezes them for use when Alysha finds the Center's food unappealing.
     As they were driving home on Saturday, Lisa asked Alysha if she would like anything special as a treat.  Alysha announced that she wanted a big mac and fries.  So they bought a big mac meal and took it home to eat.  They did not pop it in the blender as would be recommended by the staff at the rehab center.  Instead, Lisa removed the top bun and offered the rest of the burger to Alysha who took little bites, defined by where Lisa placed her fingers on the burger.  If Alysha were to take a large bite she would bite down on her mother's fingers. There is often laughter shared among this mother daughter diad, but Lisa tries to limit Alysha's laughter while she is eating.  It takes Alysha a fair bit of concentration to organize the food in her mouth for coordinated chewing and swallowing.  Laughter during meal times increases the risk of choking.  

December 6/12
No sticker for therapy today.
     Alysha had a pretty good day today under the care of her father at the Rehab Center.  She ate her meals which consisted of cinnamon apple crunch and milk for breakfast, mashed potato and sweet and sour pork with mixed veggies for lunch and minced chicken, mashed potatos and oriental veggies for dinner. 
     The promise of a sticker and a session with the therapy dog wasn't enough incentive for Alysha to complete her walking exercise without complaining today.  She did walk the planned distance for the day, but she was upset and complained for the last 30 feet of it.  Each day the therapists continue to add distance to Alysha's walking exercises.  It is such hard work learning to walk again and building up her endurance.  See video from December 1/12.  
     Memere visited today. 

December 4/12

Alysha refuses to replace the feeding tube. 

     The doctor came in today and told Lisa that the dietician recommended the feeding tube be re-inserted based on Alysha's food consumption records from last week.  Alysha declined this intervention. Since last week Alysha has been making good efforts to eat more food and drink more water.   Today she drank one 500 ml bottle of water and 250 ml of milk along with 225 mls of Ensure.  The meals that they are sending up for Alysha are half servings.  Today Alysha told Lisa she was finished after eating 3/4 of the food served for her.  Lisa explained that if Alysha wants to keep the feeding tube out, she needs to eat all of her food.  Alysha proceeded to finish all the food presented to her. To boost her calorie intake and give her a reward Alysha also ate 200 calories of cheesies as a treat.  The dietician wants Alysha to consume 1200 - 1500 calories a day and drink 2000ml of liquid.  

     Watch the movie below of Alysha speaking.  Remember that it was only a few weeks ago that Alysha wasn't using any words and her main communication was nodding yes and no.

The Road to Recovery - week 19

I walk slowly, but I never walk backward. 

(Abraham Lincoln)

Our sweet cherished Alysha Rose Smith is recovering from a post surgical complication that put her into cardiac arrest and into a coma for 7 days.  She emerged from the coma with severe brain damage.  This website was created to update friends and family of Alysha's progress along the road to recovery.  Please join us as we support Alysha on her journey.  (For earlier details, like the history behind this medical nightmare scroll to the bottom of the blog and click "older posts.")

December 3/12
The feeding tube remains out.
     After an eventful weekend at home, Alysha returned to the Rehab Center in time to start her daily therapy sessions.  Lisa, Justin and Nana joined her on her return trip and stayed the day with her.  Justin bugged Alysha all day long like brothers do.  Alysha responded by telling him off like sisters do.
     Late in the afternoon the doctor came in to talk about the feeding tube.  At this time they are going to leave it out.  They will monitor what Alysha is eating, count calories, increase her oral intake of water and fluid and they ordered 1 serving of the liquid meal Ensure for each day (to replace the 4 cans of food she used to receive through her feeding tube.) They will also run blood tests every week to make sure it is fine for Alysha to proceed without the feeding tube.
     This is a side note.  On the weekend, Alysha watched some movies on her large screen TV at home.   She had some snacks to go with her TV watching.  One of the snacks that she really enjoyed was Cheesies.   Cheesies tend to melt in your mouth making them a fairly easy snack to eat.  Doreeto's on the other hand are a more difficult snack to consume.  Justin shared some Cool Ranch Doreeto's with Alysha.  She enjoyed these.

Nana King and Alysha back at Rehab.

December 2/12
The feeding tube falls out.
     There was a small glitch last night.  After a busy day and a wonderful homecoming complete with her favourite meal (spaghetti), Lisa tucked Alysha into her own bed, put a movie on the television and set up, connected and started Alysha's feeding pump.  Shortly after her gastric tube feed had been initiated, the tube that was surgically placed to deliver liquid nutrition, water and medication, directly into her bowel came out!!
     Lisa was alerted to this by Alysha calling for her. "Mom," "Mom!" Lisa headed into the room to see what Alysha wanted.  Alysha was smiling and pointing at her belly.  It took a few seconds for Lisa to realize what she was seeing.  There was Alysha's belly freed from the last remaining tube, with the feeding tube lying on the ground at the foot of the pump + pole.  Alysha didn't seem to have found the extubation process painful.  In fact she spent the next half hour giggling as Lisa and Rich organized medical follow up.
     A quick google search and a phone conversation with a friend who has knowledge of these things helped Lisa to decide to bring Alysha to Emerge at the Barrie Hospital (RVH).  The aim is to replace the tube as soon as possible to avoid the hole closing up.  Well, add the wait-time in Emerge onto the 40 minute drive to Barrie and you can guess what happened next.  They were unable to replace the feeding tube.  They did make sure the site was cleaned and bandaged.  They told Lisa to come back and have it placed on Monday.  Lisa's plan is to head back down to the Rehab centre on Monday and speak to the doctors there.
     Without the feeding tube Alysha worked hard at drinking more water to replace the water flushes she normally receives each day.  Lisa went out and purchased some Ensure (liquid meal replacement) and Alysha drank a can of that in addition to eating the meals that Lisa prepared for her.  Alysha usually receives her vitamin and muscle relaxant pills dissolved in water through her tube.  Instead, Lisa ground them up and mixed them in with her meals.  Alysha had no problem taking her medication like this.  Alysha has told her mother she doesn't want the tube to be replaced. In fact she readily adopted the necessary changes in her eating and drinking habits to compensate for the tube remaining discontinued.
   

December 1/12
Alysha goes home for the weekend.
     What an exciting day.  As a reward for working so hard in her therapy sessions, Alysha spent time with the therapy dog today at the rehab institute.  I was surprised to see that Alysha's supported walking now only requires the support of 2 staff members.  When I saw her walk 2 weeks ago it took the support of 3 staff.  Below you will find a video of Alysha walking.  After a full morning of physio and occupational therapy.  Alysha, Lisa and the staff were all abuzz with the excitement of Alysha going home to spend Saturday and Sunday night at home. Alysha hasn't slept at her home since July 23/12.  Marcia and Abby were down in Toronto to participate in Alysha's send off.

November 29/12
Initiation of an Incentive program.
Alysha ate half her oatmeal this morning and half her carrot spice pudding.  At 11 am she did her physiotherapy starting with a new stair climbing exercise.  For this exercise Alysha holds onto 2 railings, one in each hand and alternates lifting her left and right feet up, placing them on a stair and then placing them back down again.  She did this 4 times with each foot.  She doesn't put weight on her raised foot or lift herself up onto the stair yet. Alysha went on to practice standing for 5 minutes supported by holding onto a railing with her left arm for balance.  She concluded the session by walking back to her bedroom.  She cried a bit on the walk back. Frustration?, effort?, pain? hard work?
     At noon Alysha had lunch Alysha consumed an entire serving of minced chicken and mashed potatoes. She also ate half a serving of of mashed peas.  At 1:30 the occupational therapist brought Alysha to the gym for more range of motion and conditioning exercises.  They asked Alysha what she wanted to do first and she chose the hardest task.  This exercise involved leaning forward and reaching up for an object 4 times and reaching down for an object 4 times then repeating the other exercise with her other hand and arm for a total of 16 stretches.  The therapist remarked to Ron that on Tuesday, Alysha could only manage this exercise 1 time on the left side.  She is showing fantastic progress.  The next exercises involved stretching out her arms, and again Ron commented that there has been a noticeable improvement in her ability to straighten her arms.  Ron told Alysha that he is amazed by her display of heart and determination.
  For dinner Alysha had 1 serving of minced oriental ground beef and 1 serving of mashed potatoes and half a serving of mixed vegetables.
     Alysha struggles with her therapy sessions.  She often breaks down and cries.  If Lisa or Ron aren't right there to reassure her Alysha can sometimes become unconsolable for the therapists.  After consulting with Lisa the previous day, the therapists implemented an incentive program with Alysha that capitalized on her love of animals.  Together, Alysha and the therapists come up with therapy goals.  When she achieves each goal, she gets rewarded with a sticker and when she has accumulated 5 stickers she gets a visit with a therapy dog.  Once she gets 10 stickers she gets a visit with Chocolate her horse.  Unlike the mascot for the Calgary Stampeders that made an appearance in the Royal York Hotel, Alysha's visit with her horse will be at home on the farm, not in the lobby or halls of the Rehab Institute.   Alysha seems to be responding well to the incentive program and completed her exercises today with minimal crying.

   

The Road to Recovery - week 18

"Recovery itself is a very un-glamorous daily process of being willing to fall down again, to break again, to cry again, to get up and try yet again until 'success' manifests as ever-greater sustained healing." - Shannon Cutts

Our sweet cherished Alysha Rose Smith is recovering from a post surgical complication that put her into cardiac arrest and into a coma for 7 days.  She emerged from the coma with severe brain damage.  This website was created to update friends and family of Alysha's progress along the road to recovery.  Please join us as we support Alysha on her journey.  (For earlier details, like the history behind this medical nightmare scroll to the bottom of the blog and click "older posts.")

November 26/12
Range of motion exercises.
     Alysha had a great physiotherapy session and at the end of it she walked back to her bedroom, sat on the side of the bed and lay down.  She went on to have a gruelling occupational therapy session where they worked on range of motion in her arms.  She has good range of motion in her right arm but her left arm is more contracted.  The therapists therefore have a plan to focus on her left arm.  Lisa reports that Alysha isn't enthusiastic about working on her left arm as evidenced by her crying and vocalizing but with some persistent encouragement from staff and family she will manage.  
     Alysha wasn't a fan of the hospital food today.  Instead, Lisa used a frozen (stirfry) meal that she had prepared at home, brought to the hospital and left in the freezer for occasions such as this.  Alysha had no problem eating all of her mother's home cooking. 
     
November 25/12
A visit over coffee.
     Alysha spent the day with her dad with visits from Aunt Michelle and Memere. Everyone bundled up and went for a walk down the street to Tim Hortons where they drank some coffee and enjoyed a visit.
     Alysha ate half a serving of apple cinnamon oatmeal in the morning and all of her hamburger and mashed potatos and pees at lunch.  Below you will see a picture of Alysha's dinner which consisted of minced chicken, mashed potatoes, minced peas, gravy and broth.  For desert she had chocolate pudding.  She ate almost everything.

November 24/12
Weekend therapy session
     The rehab center sometimes offers Saturday therapy sessions and Alysha took advantage of that this weekend.  Again, she walked from the therapy room to her bed.  She worked also with the speech therapist on family names.  Later, Ron worked with her on her french vocabulary like, bonjour, mon ami, je t'aime. 
     Today she enjoyed the hospital's cuisine. They presented Alysha with normal adult size portions of food.  For lunch she ate 1/4 of her quiche, all of her mashed potatoes, carrots and cranberry juice and for dinner she consumed half a hamburger patty, and all of her mashed potatoes and gravy.  The therapist observed Alysha eating and suggested that she shouldn't use a straw when drinking because it is harder for her to control.  The rehab center has a large bright common room with lots of windows and tables and a TV.  Alysha ate her dinner in this room. 
     During dinner, Pepere (Alysha's grandfather) called and spoke with her on the phone.  Alysha used her words yes and no to answer his questions and to agree or disagree with him. She used other words in their phone conversation, some were discernible others were not. Alysha continues to practice her verbal communication.
     

November 23/12
Alysha completes her quest.
     Today, Alysha walked (supported by staff) from the physiotherapy room into her sleeping quarters and then she sat on the side of the bed. The distance she travelled was about 30 meters.
     Now that the antibiotics have been discontinued Alysha enjoyed a day free from vomit and gagging.  This put her in good spirits for her therapy sessions.
     The speech therapist's focus today was swallowing.  Once again Alysha participated in a swallow test.  This time the staff were evaluating Alysha's ability to eat chopped food.  Lisa has been making Alysha's favourite meals (spaghetti, chicken stir fry and sweet and sour meatballs) at home and coarsely blending them so that they have small chunks. Alysha hasn't eaten pureed meals for over a week now, so this test was merely a formality.  It was no surprise to Lisa and Ron who have been feeding Alysha her meals that she passed the swallow test. 

November 22/12
Alysha can spell
     Today Alysha walked 25 meters.  She made it from the physiotherapy room to the doorway of her bedroom.  Alysha is on track to complete her week's quest tomorrow and walk from her physiotherapy room into her bedroom.  Lisa will suggest that the walk happen at the end of the therapy session because when Alysha sees her bed she'll be all about climbing into it and ending the session.
     A new speech therapist worked with Alysha today.  She asked Alysha to inform her of the names of people in her family.  Alysha told her that she has a brother and a step brother and then proceeded to verbally spell their names. J-u-s-t-i-n and K-e-i-r-a-n.  Lisa was thrilled with the knowledge that Alysha can spell.
     Lisa also told me that Alysha has become a regular chatter box.  She is using words a lot.  Some of them Lisa understands, others she doesn't. Today Lisa was bugging Alysha and kissing her neck and she heard Alysha say, "get lost." 
     A pattern of vomiting is associated with the administration of Alysha's antibiotics, so after 3 days of treatment and vomit they are discontinuing this medication.  They will test Alysha in the next week to make sure the brief treatment regime worked.

November 21/12
Alysha walks 20 meters.
     Today Alysha hung out with her dad.  She walked 20 meters during her physiotherapy session and she stood up for a full 2 minutes and 25 seconds.  Her strength and endurance in improving day by day.   It used to be that Alysha could only stand for 5 - 10 seconds at a time.  

November 20/12
Alysha reads words.

    
     In therapy today, Alysha walked 15 meters supported by 3 staff members.  The goal is for Alysha to be able to walk (with assistance) from the therapy room back to her own room by the end of the week.  Alysha is on track to meet this milestone.
     Yesterday the speech therapist wrote the words that Alysha was practicing on a piece of paper; Mom, Dad, Aunty Marcy, Justin, Nana, Cierra and Aunty Shell.  She wrote these words with a pen and made the letters around 1.5 - 2 inches tall.  She asked Alysha if she could read the letters and Alysha responded no.  Alysha didn't have her glasses on at the time.  Today the therapist traced over the words with a black marker and Alysha was able to read them and say the words when the therapist pointed to them.  This indicates to us that Alysha can read.  We are looking forward to some more exercises such as these to confirm Alysha's  knowledge of written and spoken language. 
     Alysha also participated in an exercise that tested her vision.  They held two cards with related images side by side and Alysha couldn't make out the pictures.  The therapist then held both cards up together but separated them a small distance and Alysha recognized and responded appropriately about the images. The therapist explained to Lisa and Jeanne (Nana was down visiting today) that Alysha's eye muscles are a bit weak.  As they strengthen Alysha should be able to see images closer together like in the exercise she completed today.
     Alysha also made some progress with the amount of food she can take in orally.  Today she ate 1.5 cups (12 ounces) of a chicken stir fry and rice meal that Lisa had prepared for her.  For comparison, previously Alysha was eating 4.5 ounces of food for a meal.  In this meal, the vegetables and chicken were chopped into small pieces in a food processor but the rice remained unprocessed.  
      Yesterday we were told by the doctor that they had discontinued many of Alysha's medications such as blood thinners, antipsychotics (Loxapine and Clonazepam) and the evening chill-pill (ativan).  The only medications she takes regularly now are multivitamins,  a heavy-duty ant-acid, and baclofen (a muscle relaxant).  Lisa was happy that they had discontinued these medications as she had been advocating for this throughout Alysha's hospital experience.  Lisa was unhappy with the fact that changes had been made a week ago without her knowledge.  Lisa has asked the staff to please keep her informed her of any recommended changes to Alysha's medications and care.  Today they started Alysha on antibiotics for another urinary tract infection.  
     At Lisa's request they are working at giving Alysha's medications orally instead of through her feeding tube.  Today they started giving Alysha her multivitamin mashed up in some food.  This was consumed without any problems.  They will continue to give Alysha her vitamins orally and eventually will add the other medications into an oral regime as well.  Later in the morning, a nurse and student came in to give Alysha some medications by her feeding tube.  This is a process Lisa has witnessed hundreds of times.  The student did a nice job working with Alysha but the process ended up involving more water than usual to dissolve the medication.  After they finished giving Alysha her medication through her tube, they planned to give her additional water through her tube, "a water flush." Lisa spoke up and said, "you have given her a lot of water already, she doesn't seem to tolerate too much water at one time and she will throw up."  Despite Lisa's objections, the nurse and student went ahead and gave the extra water. Within the hour Alysha vomited.  Another "mother knows best," story.