The Road to Recovery - Week 15 (St. Michael's Hospital Toronto)

Remember that it's consistency in the small things 

that make the biggest difference. 

November 5/12
Alysha drinks from a water bottle.
      Today was a nice day for mother and daughter.  They shared some chicken noodle soup.  Alysha ate the broth, while Lisa ate the chicken and noodles (kind of like Jack Sprat and his wife.)  Alysha also drank water from a water bottle that Lisa tipped to her lips.  Alysha's swallowing seems to be coming along quite nicely.   Alysha practiced standing again with the tall walker.   Once more, she wanted to get walking  but was encouraged to be content with standing to build up her leg strength and stamina.

modified walker/ tall walker

November 4/12
Alysha takes some steps.
      A lovely social Sunday under the care of Ron with visits from Memere, Auntie Shell, Brycen, Aarren and Nana King.  Ron was happy to help Alysha from bed to the commode or wheel chair.  During each of these transfers, Ron supported Alysha to take a couple steps before she sat down.  Ron figures all of this standing and stepping will help strengthen Alysha's legs, "so that she can run out of this hospital."  

Dad and Daughter

Alysha, Ron and Memere

November 3/12
Alysha drinks through a straw.
     Alysha had a happy day with many visitors.  Justin came to see his sister along with Nana, Lisa, Abby, Jason, Chrissy, Noah and Jacob. Ron was with his daughter for the day.
     Alysha sucked up some cold beverages through a straw.  She was going to town sucking and swallowing until finally Lisa commanded the drink holders to, "get the straw out of her mouth."  Lisa was worried that Alysha was going to overwhelm her stomach with these fluids after it has had nothing of any volume in 15 weeks.  Lisa feels more comfortable with Alysha increasing the volume of food and fluid she consumes slowly.  Alysha on the other hand, is wanting to speed through this process. Bring on the hamburgers!

Brother and Sister

November 2/12
Alysha has a shower.
      What an exciting day. The morning started off with Alysha having a fit of laughter at her mother's expense.  After Lisa had taken, the train, walked to and through St. Michael's hospital and walked around in the care unit that Alysha is on, Alysha looked at her mother and started to laugh.  Lisa couldn't figure out why she was laughing,  and Alysha was so hysterical with laughter she couldn't focus enough to communicate to Lisa the cause of her amusement.  Finally Alysha pointed to Lisa's coller where her tag was sticking out at the front of her neck because her shirt was on inside out and backwards.  Mother and daughter shared the laugh and Lisa switched her shirt around.
      Lisa thought it was time for Alysha to have her first shower, so off they went.  Lisa put Alysha on the wheeled commode chair and brought her into the shower.  Lisa washed Alysha's body and hair.  Alysha loved the warm water and the wash-up.  She leaned her head back and let the water run down over her face.
      Today the physiotherapist planned to help Alysha to STAND with the assistance of a modified walker.  Alysha got excited when she saw the walker.  They instructed Alysha to stand up straight which she did and then suddenly standing wasn't enough so she tried to take a step.  The therapist reminded Alysha that she was just supposed to stand.  But since she was so keen, they suggested that Alysha stay in one place but lift her legs in an alternating pattern.  She had no problem lifting her leg and balancing on one leg.
      Through some vocalizations and gestures, Alysha communicated to Lisa that she wanted something to eat.  They headed to the cafeteria. Alysha chose a strawberry yogurt and Lisa and Alysha shared the yogurt.  Alysha ate 1/4 and Lisa ate the remaining 3/4's after Alysha indicated that she had had enough.
      Wow. Alysha is rehabilitating herself so efficiently as of late.  It is soooo exciting to see.
 

November 1/12
A Hallowe'en Horror Show.
More inappropriate care after Lisa Leaves for the night.

   Before Lisa left her daugter for the night on the 31st,  Lisa explained Alysha's toilet successes to the staff and the routine she has used with such favourable outcomes for the last day.  Lisa told the staff that she places a blanket over Alysha's lap in an attempt to give Alysha some privacy while on the bedside commode and this seems to help her go. 

      I am so sorry to report that in Lisa's absence, the staff drained Alysha's bladder by forcing another catheter into her infected urinary tract.  A Hallowe'en night Horror Show!! The staff claimed that they tried to sit Alysha on the commode but she wouldn't void.  Lisa was horrified to hear what they had done to her daughter.  She asked if the staff had placed a blanket over Alysha when they were helping her toilet and the staff reported that they didn't.   

     After another vociferous round of advocacy for  appropriate and sensitive care for Alysha, the staff will want to exhaust absolutely every other option before even thinking that a catheter be used again on Lisa's daughter.   In the afternoon, Lisa made information signs for Alysha's bedside to teach the paid medical staff how to support her daughter's toileting successes. 

     Alysha went on to have a fantastic day with her mother.  They shared some laughter and both delighted in Alysha's toileting success.  There were no bathroom accidents during the time that Lisa was there and the catheter didn't make another appearance. 

     

October 31/12 and November 1st.
Alysha sucessfully controls her bladder and bowels.
     Alysha got dressed up in themed clothing to celebrate Hallowe'en at St. Michael's hospital.  See picture below.  Please notice how little support is needed to help her maintain a sitting position at the side of the bed.
     After much confusion by staff it has been confirmed that Alysha does in fact have a urinary tract infection.  There are two infecting bacterial strains and Alysha's medications have been adjusted to eliminate both of them. 
     On arrival to the hospital, Lisa and Jeanne heard Alysha screaming and crying as they walked down the hall to Alysha's room.  The staff were pressing on Alysha's bladder with an ultrasound probe to confirm that her bladder was full.  Lisa could tell that her daughter was in pain.  The staff told Lisa that they were going to put in a urinary catheter because Alysha hadn't voided all night.  Lisa suggested that instead, they get Alysha up onto the commode where she proceeded to void a volume of 1200 mls of urine.  No kidding she was in discomfort, a normal large void is 500mls.  It took a combination of willpower and coordinated withholding for Alysha not to have voided when her bladder was so distended and the staff were pressing on it with a probe. 
     Using the signal that Ron and Alysha worked out, Alysha successfully voided and had bowel movements on the commode all day on the 31st while her mother was there.  There were no accidents all day long, not even when Alysha was napping.  This triumph represents a huge step forward for Alysha's rehabilitation.
     
    

October 30/12

The urinary catheter is removed.

     A therapist from the 9th floor was up to see Alysha today and was very impressed with the progress that she has made with her arms over the past week and a half.

     Alysha had some unpleasant gastrointestinal sequelae including/ but not limited to vomiting.

      I don't know where to begin to tell you of the confusing day we had today regarding whether or not Alysha has a urinary tract infection (UTI).  Ron reports that a resident came to assess Alysha today and told Ron that they didn't think Alysha had a urinary tract infection because of the results of a urine culture that was taken on October 25th.  A nurse told Lisa yesterday that there had been no previous, recent urine cultures and yet we learned today that one was done on the 25th??  We were  under the impression that a urine test and culture had been taken yesterday but Ron reports that there is no record of a urine culture being initiated on October 29th. Regardless of the vanishing and appearing urine tests, and their questionable results, the staff took Alysha's indwelling catheter out which effectively accelerated Alysha's initiation of bladder control rehabilitation. Ron and Alysha worked out a signal for Alysha to communicate to her family and staff that she needs to urinate. They practiced urinating on the commode.
      I am not sure whether or not Alysha is still taking the antibiotics that she was prescribed yesterday for the urinary tract infection she may or may not have depending on who you speak to.

The Road to Recovery - Week 14 (St. Michael's Hospital Toronto)

There are so many people out there that will tell you that you can't.  What you've got to do is turn around and say, 
"watch me."

October 29/12
Dr. Lisa Diagnosis a Urinary Tract Infection.
      On this blustery rainy day, Zoe and I headed down to Toronto to see Alysha.  She had a productive morning with an early physiotherapy session and pivot into her chair.  By the time Zoe and I arrived she was ready to head back to bed for a nap.  We reassured her we would still be there when she awoke and wished her a happy nap.  By the end of the afternoon it was clear that Alysha was having a sleepy weepy day.  The speach therapist was in and Alysha tried very hard to eat and swallow the food she was given.  Today she started with ice chips and then moved on to yogurt. She liked the yogurt.  The therapist asked Alysha if she wanted to smell the yogurt first and she thought that was amusing.  Alysha's attempts to eat and swallow with the therapist were interspersed with tears and crying.  When asked if she was in pain, Alysha shook her head no, but indicated yes to the question, "are you frustrated?'
      Lisa has been concerned about the look of Alysha's urine in her catheter bag for the past 2 weeks. It is cloudy with particles in it.  Lisa has asked a number of the staff if it looks normal and asked about a bladder infection.  A couple days prior to the huge abdominal pain night on October 19th, Lisa asked them about a possible bladder infection and drew their attention to Alysha's urine.  Lisa was told that her urine was normal.  Apparently it was never tested.  Today, Lisa finally insisted on a urine test.  Lo and Behold, the test came back showing a lot of bacteria and blood in her urine.  They have started Alysha on antibiotics as they wait 48 hours for the urine culture results to confirm the infecting organism and the correct antibiotic.  Hmmm, I wonder if this contributed to the abdominal pain that was investigated on October 18th, 19th and 20th. I am not sure I can even imagine where Alysha would be right now without the daily vigilant care of her family.  Lisa is going to request that for the duration of Alysha's stay at St. Michael's hospital that Alysha's urine be sent to the lab regularly to rule out infection.  Lisa headed home this evening just as the Frankenstorm (Hurricane Sandy plus another storm front) began exerting it's influence in Toronto.  Perhaps we could compare the fierceness of this storm pummelling the Atlantic coast to Lisa's fierce love and commitment to her family and her daughter's health and rehabilitation.  I am sure that the staff at St. Michael's hospital would agree that you could say this of  Lisa's advocacy for her daughter; "The skies opened and a tempest erupted."

Doctored image depicting The Frankenstorm in New York

October 28/12
A social Sunday.
      Today was another fun social day under the care of Lisa.  Visitors included Jason, Chrissy, Noah, Jacob, Michelle and Brycen.  Alysha was excited to start using a new ipad, but became a little overwhelmed when her younger cousins enthusiastically took on the job of ipad orientation and instruction in a discordant way.

October 27/12
Iced Cap and a Donut.
        Alysha greeted her father in the morning by saying, "Hi." Ron reports that she was all smiles and laughs for the first half of the day.  Alysha got into her wheel chair with the support of the staff and they went for a roll (powered by Ron) down to Tim Hortons on the main floor of the hospital where they shared an iced cap and chocolate donut.  Ron said that he gave Alysha a couple sips of the cold beverage because she indicated that she wanted some, "and did she ever enjoy it, swallowing some and drooling the rest on her chin.  She also enjoyed some icing off the donut."
      Uncle Paul, Denise, Kahlan and Alex joined Alysha and Ron at Tim Hortons for a social coffee-break and continued their visit up in the care unit.  Carolyn and Deanna also came by for a visit.  Alysha went outside in the afternoon but only for a short time because of the unpleasant weather.  Alysha received Advil (without relief) and then Tylenol 3 for stomach pain she started complaining of later in the day.

October 26/12
Alysha heads outside for a second time.
     Today was a really good day.  Alysha was all smiles and laughter for most of the day.  She went outside for an hour and a half.  She saw her cousin Brycen for the first time in 14 weeks.  Brycen hopped in Alysha's wheel chair with her and the two of them went for a roll.
     In contrast to what Ron was told yesterday, the unit manager reported a different plan to Lisa today after speaking to someone at the Toronto Rehab Institute.  The unit manager was told that the assessor was very impressed with Alysha's progress and would like to come back and see her next week with the hopes that she may be ready to go to the Rehab institute as of next week.
     They are planning on running Alysha's feeds through the night to free her up during the daytime hours for therapy.  Apparently this is not uncommon to facilitate day-time therapy sessions.  In preparation they moved Alysha's feeds to the night time.  Lisa reports that since they changed Alysha's formula to a fiber-free variation, her pain has been less.

Alysha, Brycen and Lisa

October 25/12
Outside for the first time in 14 weeks.
      On this unseasonably warm day, Ron took Alysha outside for some fresh air.  Fresh is a relative term of course because they were downtown Toronto.  This was the first time Alysha was outside since she walked into the hospital on July 24/12 as a healthy, chatty, young woman in her 2nd year of college.  
      The "scout," from the Toronto Rehab Institute came back to evaluate Alysha's readiness for their rehab program.  Ron reports that they noticed a big improvement but they feel she is not ready yet.  They made a plan to be back in 2 weeks to re-evaluate.  
      The fact is, that similar to many young adults her age, Alysha doesn't like mornings and the assessment took place around 8:30 in the morning.  Alysha performed a bit but she was tired. Once she got into her wheelchair, she didn't want to cooperate any more and promptly fell asleep. 
*** I have added a video of Alysha eating a small piece of chocolate from a candy apple under the October 23 update.***

October 24/12
Is it Pain or Frustration?
      Alysha practiced with the new call-bell today.  The bell looks like a flattened hockey puck and is very sensitive.  By trial and error, Lisa and Alysha attempted to work out where to place the call bell in order for Alysha to reach it consistently but not knock it accidentally. 
      The physiotherapist came in today.  There is a comforting familiarity with this woman.  She has been up to work with Alysha almost every single day since she was released from the Intensive Care Unit.  She is very aware of Alysha's abilities and she has celebrated Alysha's successes alongside her family. In contrast, the doctors work in teams and the teams are further diluted with students.  For any one aspect of Alysha's care we can see multiple members of a team. The same is true of the nursing staff.  There is also a lack of continuity with the nursing staff as there seems to be no committment to assign Alysha with a nurse who has previously worked with her.  
     Sorry, back on track with the physiotherapy session today.  Alysha ends up crying at some point during most physiotherapy sessions.  There has been an assumption that the crying is due to pain.  Today was no exception.  While Alysha was crying  the physiotherapist asked her a question, "Are you crying because you are in pain?"  Alysha shook her head, "no."  The therapist asked her, "Are you crying because you are frustrated?" Alysha nodded, "yes," to which the therapist responded with many positive affirmations of Alysha's steady progress and successes.  Alysha responded by settling down emotionally applying herself to the physiotherapy session. 
      In order for Alysha to go to a rehab program, she must be able to tolerate her liquid feeds being delivered at a rate of 160 mls an hour through her feeding tube.  In the past week they have been stopped as we have tried to figure out the source of Alysha' abdominal pain and then re-initiated at 50 mls an hour.  Today her feeds are running in at 80 mls an hour. 
      Lisa asked the speech pathologist to help us rehabilitate Alysha's verbal skills.  In short Lisa was told that this was better left to a rehab program.  We won't be waiting to initiate this aspect of Alysha's care.  Family will be researching tips for speech and language rehabilitation and sharing them with Lisa and Alysha. 
      A representative from the Toronto Rehab Institute is coming to evaluate Alysha again tomorrow for her readiness for the residential rehab program. 
      
October 23/12
More Pivots, More Swallowing.
     Alysha continues to build on her skills.  She pivoted in and out of her wheel chair two times today.  She practiced swallowing some ice and a secret treat from her mother (see video below).  She tried to talk on the phone to Rich and to Ron and had big smiles on her face for both of them. 
     It has been a week since Rich returned to work and Lisa lost her daily travel and rehab companion. Lisa seems to be coping well.  She is a strong tenacious woman who has every intention of seeing Alysha though her full recovery.  What an incredible woman. 

   

The Road to Recovery - week 13 (St. Michael's Hospital Toronto)

The greatest thing in this world is not so much where we stand as in what direction we are moving. (Oliver Wendel Holmes)

Alysha update October 22/12
Alysha stands and pivots into her wheel chair.
      There was a lot going on today and Alysha was a bit restless.  In the morning, during her supported-standing exercise, the physiotherapist added a pivot action and Alysha successfully moved herself into her wheelchair without the mechanical hoist. She had the same success with her supported-transfer back into bed later in the afternoon.  Of note:  The hospital is loaning Alysha a smaller black wheel chair for her use in the hospital.  This cool, new upgraded model replaces a larger, unfashionable, light-blue vinyl chair that resembled a Lazy-boy on wheels.
      The results of the endoscope (without biopsy), ultrasound and CT scan didn't reveal the cause of Alysha's pain.  In response to the continued discomfort they switched Alysha's liquid food (Jevity 1.2) to one without fiber (Osmolite 1.2).  Her bowels continue to perform infrequently and only with the assistance of a laxative every 3 days.
     An eye specialist was in today accompanied by a student doing an elective placement at St. Michael's hospital.  They completed a few tests due to a frequent squinting action Alysha has been exhibiting recently with her right eye.   They found that physically her eyes seemed fine with the exception of a slightly dry right eye.  Saline eye drops were recommended periodically through the day. They are unable to test Alysha's eyesight until she can verbalize more.  Lisa did inform the experts that Alysha can see and identify colours.
     The speech therapist was in today for a swallow-therapy session.  She started with a small mouth sponge on a stick that she placed in ice water and then swabbed Alysha's mouth with.  Alysha opened her mouth for the water swab and tried to close her mouth and suck on it.  The therapist then moved on to a tiny ice-chip on a cold spoon.  The therapist put the spoon in front of Alysha's mouth and Alysha was able to move her lips and jaw in such a way to get the ice off the spoon and into her mouth herself. We all watched Alysha's neck as she swallowed the water from the melted ice.  The same sequence was repeated with some chocolate pudding, where Alysha successfully attained the small amount of pudding from a cold spoon.  After pushing it around in her mouth a while she appeared to get frustrated and start to cry so they removed the pudding with a mechanical suction tube.  There is a therapy plan to continue practicing with ice and a cold spoon a few times every day.
      The unit manager was in and gave Alysha 2 modified call bells to practice with in preparation for an eventual move to a residential rehab program.
      Lisa's cousin Vanessa, her husband Ryan, Jeanne and I were down to visit Alysha today.

Link: Article - Summary of options for liquid feeds (Enteral Formulas)

Vaness and Alysha

Alysha update October 20th and 21st.
Inconclusive Ultrasound and CT scan results.
Alysha understands French
    Some more exciting news about Alysha's cognition. Ron initiated some brain exercises with Alysha where he asked her some questions in French like : "Alysha montre moi ta bouche," (show me your mouth) and she pointed at her mouth.  He asked, "montre moi ton nee (show me your nose)," and she pointed to her nose.  Ron asked Alysha to, "levre ton bra droit (raise your right arm),"  and she raised her left arm.  Ron thought, "this is fine she still raised an arm even if it was the wrong one."  There was a raucous round of laughter when Ron chuckled in response to his daugter's retained knowledge of the french language to which Alysha responded with a burst of laughter.  Ron reports that there were a number of occasions filled with laughter over the weekend.  Ron also brought a tissue to Alysha's nose and asked her to blow her nose 2 times and she did this.
     The family was told that the cause of Alysha's pain couldn't be determined by the ultrasound on Friday night so she had an CT scan on Saturday.  This test also didn't pin-point the cause of the pain.  In preparation for the CT scan the staff needed to have IV access to inject a contrast-solution.  They were planning on starting a PICC line because of the difficulty they had with the IV access the night before.  Ron and Lisa discouraged the use of the PICC line recommending they try one more time to start a regular IV.  They felt it would be successful Saturday morning because Alysha wasn't all stiff and contracted like she had been the night before in so much distress from the pain.  Thank-heaven's for this families knowledge of their daughter because they were correct.  The staff were able to place an IV line. They gave Alysha a sedative and Ron stayed with her providing reassuring words to calm her so they could run the test.
      Abby and a friend visited Alysha on Saturday.  They sat and chatted with her for the morning and early afternoon. Alysha continued to have cycles of pain through the weekend. Ron took Alysha for a number of rolls in her chair as a distraction.

Alysha and her Dad 

   
   
Alysha update October 19/12
No need for the colour flashcards.  
More patient Advocacy from family.
      The last few times Lisa has worked with the colour flashcards with Alysha she has stared through them and looked uninterested or board.  We wondered if she was colour blind.  It turns out she was just board with our trivial flashcard exercise.  Lisa tried an exercise today where she held up a colour card and asked Alysha to respond by nodding yes or no if Lisa announced the correct colour.  Alysha correctly identified every colour.  Lisa promised to put the colour flash cards away and never bring them out again.  We are so excited about this.  Alysha's ability to indicate yes or no has opened a whole new depth of understanding of Alysha's cognitive abilities. What we are learning is so encouraging.
      Lisa received report from the nurses this morning that Alysha slept well until 3:00 am and then she woke up in a lot of pain.  In response to her pain behaviour they shut off Alysha's tube feeding.  Throughout the morning Alysha's pain continued in the absence of any further plans for investigating the cause of the pain.   Lisa conducted some medical investigations of her own.  She asked Alysha to answer some questions about her pain by nodding yes and no.  Lisa asked if Alysha's pain was all over her abdomen and she shook her head no.  Lisa asked if her pain was on the left side and she shook her head no.  Alysha nodded yes to the questions about the pain on the right side, top and bottom.  Lisa clarified that the pain was on the entire right side.  Lisa then got on the phone to the plastic surgeon who is coordinating Alysha's care and advocated for further diagnostic tests to determine the cause of the pain.  A gastro specialist came up to see Alysha.  This specialist didn't believe that Alysha could indicate where her pain was so the pain-questions-nodding exercise was repeated for the specialist.  A plan was made for an ultrasound.  As the afternoon hours slipped away without an ultrasound being completed, Alysha's pain became stronger and stronger until she was screaming in pain.  After trying so hard to conceal her anger and frustration over the lack of action, investigation, diagnosis and treatment of her daughter's pain and a general lack of appropriately coordinated care for Alysha, Lisa started to advocate with more vigour and volume for her daughter's medical needs to be met.  In response to Lisa's advocacy, plans were made for a CT scan but this test couldn't be completed as the IV team failed 6 times to get a prerequisite IV started.  Alysha has had very little to eat and drink for the last 3 days because the staff's response to Alysha's pain has been to shut her feeds off.  Also, preparation for the endoscopy required no food for a time prior to the procedure.  Alysha is supposed to receive 6 cans of liquid food (enteral formula) a day.  She has received 2 cans of food over the past 3 days.  The subsequent nutritional and hydration deficiencies likely contributed to the inability to start an IV.  Finally at 10:00 pm they performed an ultrasound for Alysha.  The plan is to do a CT scan on Saturday if the ultrasound results are inconclusive. 
      This dreadful day of pain for Alysha, is just another example of how inappropriate it is for Alysha's care to remain under a plastic surgeon on on the present unit that she is on.  Lisa was told that the plastic surgeon has attempted to get Alysha's care transferred to a physician and a unit that is better equipped to meet her needs but the other physicians and unit have refused to take her. 
     A family member spent the day yesterday researching rehabilitation techniques and exercises for swallowing and shared them with Lisa to start practicing with Alysha when she is more comfortable. I have included the links to the resources below. The term for difficulty swallowing is dysphagia.

Link: Dysphagia therapy
Link: Tongue exercises
Link: Lip exercises
Link: Jaw exercises
Link: Swallowing exercises

Alysha update October 18/12
Endoscopy.
     Alysha had some more standing practice at the side of the bed.  What is particularly exciting is that the staff don't have to pull Alysha to a standing position.  Instead, Alysha initiates each discrete standing session by using her trunk muscles to stand up, and sits back down each time when she is ready - usually 5 - 10 seconds later. On today's session she adopted a standing position 4 times. On one occasion when she was standing up, Alysha took a step forward.  It looks like our girl wants to get walking.
     After yesterday's failed swallow test, and a plan to only have the speech therapist (who is responsible for the swallow test) come up every 3 days, Lisa showed up with a pudding cup and told the nurses that she was going to go ahead and practice feeding with Alysha unless the speech therapist came up and told her otherwise.  This brought the therapist promptly up to the floor.  Lisa shared her concerns that 1 brief attempt at swallowing every 3 days wasn't going to be helpful rehabilitating the coordinated efforts needed to swallow.  The therapist recommended against feeding practice with food because of the threat of Alysha getting food in her windpipe and causing pneumonia (aspiration pneumonia). The therapist told Lisa that Alysha can't swallow because of neurological damage and that it is best to wait until she is in a rehab program to work at rehabilitating her swallowing.  Until that time they will continue to come up for a short swallow test every 2-3 days.  No instruction was given about exercises we can do with Alysha to improve her swallowing.  (Who takes a test without practicing for it?)  The family is very unhappy with this response.  From a near vegetative state, Alysha has taught herself to stand, nod yes and no, move her legs, arms and fingers.  She can wipe a tear from her cheek.  She can cough, she can vocalize.  She can close her lips to make the sound B to form the name Aaabb for Abby.  She can use her cheek muscles to create a vacuum in her mouth to pull spit out of her salivary glands.  DON'T TELL US SHE CAN'T LEARN TO SWALLOW!
     Alysha continued without food until late afternoon after her endoscopic exam, where they sedate her and put a small camera down her throat through her stomach and into her intestines where her feeding tube enters.  The test was performed to investigate Alysha's abdominal pain.  They confirmed through this test that the tube was infact in the right place.  Any further findings from this exam were not shared with the family.  After a significant duration without food, they restarted Alysha's feeds.  Within 15 minutes of the initiation of the feeding Alysha vomited, and was exibiting her "pain behaviour."  They shut the feed off and restarted a couple hours later.
     Jason, Chrissy, Jacob, Noah, Jeanne, Abby, Zoe and I visited today.

Alysha update October 17/12
First Swallow Test.
      Today the staff tested Alysha's ability to swallow.  They gave her the option of a piece of ice or a tiny amount of applesauce.  Alysha chose applesauce by communicating through nodding.  They put the food on Alysha's tongue and she was unsuccessful at swallowing it.  Lisa described the volume of applesauce as similar to a "raindrop."  This very short, failed attempt will be repeated in 2 or 3 days. We are keeping in mind that Alysha's neck has been traumatized by and is healing from the tracheostomy that was recently taken out.  We know that the feeding tube (esophagus) is a separate tube that runs behind the breathing tube (trachea).  We are also mindful of the fact that Alysha hasn't used her swallowing muscles in 12 weeks.
      Lisa was wondering if there is anything we can do to encourage Alysha to practice swallowing.  She wonders if one short try every 2 to 3 days is enough to support the rehabilitation of Alysha's swallowing.   Lisa was remembering how it was when she taught her babies to eat.  Months of drinking practice followed by repetitive sessions of 1/4 teaspon sized amounts of food 2 - 3 times a day for 5 - 10 minutes at a time.  This is on Lisa's list for discussion at the weekly Thursday multidisciplinary meeting about Alysha.
      Regarding the abdominal pain, Alysha's feeds were stopped today and weren't re-started for reasons unclear to the family until later in the afternoon.  Eventually the family was told that an endoscope investigation may take place tomorrow.  Alysha did show signs of pain today in the hours after the feeds were cut off, but the behaviour wasn't as dramatic as usual and there was no crying.  Additional short bouts of pain-behaviour were noticed after the administration of medications and water through her feeding tube.  There are no plans by the staff to switch the brand or type of liquid nutrition being given to Alysha.
   
Alysha update October 16/12
Initial Assessment for a Rehab program.
      Alysha had another interactive happy day with the exception of what appears to be stomach pain relating to her feeds.
      The phyiotherapist had her standing on her own with minimal assistance at the side of the bed.  Alysha did this four times.  The first time she cried a bit but the next 3 times she just got down to business.  The tilt table was removed from Alysha's room as it is no longer needed now that Alysha can stand on her own.  The ongoing plan is for Alysha to stand for a small amount of time with support from staff every week-day.
      A woman from the Toronto Rehabilitation Institute came by to assess Alysha's readiness for a residential rehab program.  She is not quite ready yet.  There are 3 things Alysha needs to accomplish first.
1. She needs to be able to communicate yes and no. (After seeing Alysha's ability to nod and shake her head yesterday, I think she can already do this).
2. She needs to have her feeds on a more usual schedule, like a breakfast, lunch and dinner schedule.  Right now her feeds go through a tube into her small intestine and they go in slowly and constantly over the course of the day.  Alysha needs to be able to tolerate a more fast paced delivery of food through her tube or be off the tube altogether.  Lisa is looking forward to the latter.
3.  She needs to be able to use a call bell or call button, as there won't be a night sitter at the rehab center.  There are plans to start practicing with various call bell options ASAP.
      Once again, Lisa is having to facilitate the investigation, diagnosis and treatment plan for a medical aspect of Alysha's care.  This time it is related to Alysha's abdominal pain.  If you recall she had a stomach xray last week. The doctors couldn't find an answer to her abdominal pain with this one test so they stopped investigating and came up with the unlikely and since disproven theory that it was back spasms that cause her pain.  No further abdominal, gastro-intestinal tests have been done.  Lisa has been telling the staff for over 2 weeks now about her concerns about her daughter's abdominal pain.  Nothing has been done except they have offered Alysha the bandaid solution of medications to mask the symptoms.  Lisa believes that the problems are related to her feeds somehow.  A couple weeks ago, which corresponds to these pain episode during the day, Alysha's feeds were switched from during the night to during the day to better reflect a normal human eating cycle.  It was after this switch that Alysha started sleeping through the night and we started to see regular pain responses during the day.  Lisa has noticed that the pain starts within 45 minutes of her feeds being initiated and reaches a crescendo late afternoon, early evening.  She also noticed that when the feeds are turned off, the pain goes away.  Lisa wonders if Alysha has become lactose intolerant.  Alysha didn't previously suffer from this intolerance but there is a family history of the disorder and Alysha has had 12 straight weeks of a lactose based liquid diet.  Tomorrow Lisa is going to request that the staff trial a lactose free source of nutrition and step up their investigations into Alysha's pain.

The Road to Recovery - week 12 (St. Michael's Hospital Toronto)

He who would learn to fly one day must first learn to stand and walk and run and climb and dance;  one cannot fly into flying. (Friedrich Nietzsche)

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.")

Alysha update October 15/12
Smiles and Giggles and Responsive communication.
     I headed down to Toronto today to see for myself all the amazing progress I was hearing about.  I wasn't disappointed with what I saw.  Alysha was responding to communication around her with actions and smiles and frowns and giggles.  Alysha knows her right side from her left side.  If you ask Alysha to raise her right or left foot or right or left hand without gesturing or prompting, she can pick up the appropriate sided limb. She can nod yes and shake her head no.  On a few different occasions she raised her hand to her cheek to wipe away a tear or scratch her nose. 
      A lot of Alysha's vocalizations sound like a soft a.... aaaaahhhhhh, aaaaahhhhh. Alysha's cousin Abigail called and we put the phone up to Alysha's ear.  We heard her say Aaaaaaaaaaaaaab. Then Abby asked her to say, "hi," and heard the airy "Hhhhhhhhh" sound without the "i".  The family is looking forward to a visit from the speech therapist to help us facilitate Alysha's speech rehab.
      The day was filled with laughter.  It started with a laughing outburst when I told her a funny story about her cousin Abigail.  It continued each time she sneezed or drooled mucus that someone would have to catch or clean up.  In fact we had a 3 minute game of catch the mucus while Alysha was sitting in her chair.  She purposely drooled out of her mouth so that her mom would jump and catch it.  (See the video clip below)
      Doctors came to assess Alysha to figure out the source of pain that she has been having in the late afternoon for the past 2 weeks.  In the morning when Alysha was pain-free, the doctor stood at the foot of Alysha's bed and was asking Lisa what Alysha looks like when she is in pain.  While he was waiting for Lisa's answer, Alysha provided a demonstration by pulling her legs up to her abdomen and wriggling back and forth in the bed.  Lisa pointed to Alysha and responded, "like that."  Lisa then said, "Oh my goodness Alysha are you giving the Doctor an example of your pain?"Alysha confirmed the charade with a smile and a giggle.  She looked pretty proud of herself. Later in the day I saw Alysha overcome with this abdominal pain and it looked exactly as her demonstration did with some crying sounds added in.  The doctors came back when she was having a pain episode in the afternoon and after some quick assessments determined that the pain was not due to muscle spasm as previously thought but was abdominal in origin.  Further investigations into this pain will take place this week.
      Nana King visited today and got a long awaited hug from Alysha when she was on the tilt table. For the most part, the tilt table session didn't go well because of the abdominal pain Alysha was having.  The therapist recognized that Alysha was in pain and cut the session short. 
      

     


Alysha update October 14/12
Alysha extends her arms to hug her uncle Paul.
      Today Alysha was sleepy.  She did wake up to spend a few hours with Uncle Paul and Denise.  She amazed them by how well she was doing.  She showed off raising her arms and legs, winking at them, nodding yes and no and trying to speak.  When Ron asked her to give a kiss to her uncle Paul she extended both her arms for a hug as well.  Shortly after Paul and Denise left Alysha returned to her bed after spending 3 hours in her chair.
      They took stomach x-rays today to try to pinpoint the cause of Alysha's discomfort as it has appeared lately that she has some abdominal or pelvic pain.  The staff wonder if she has been having some muscle spasms in her back.  They suspect her vomiting last night was because of acid in her stomach so they gave her gravol, Zantac and may look into muscle relaxers on Monday.  These medications will make Alysha drowsy, but hopefully she will be alert and awake enough to continue to build on the wonderful progress she has made over the past four days. 

Alysha update October 13/12
Speech therapy is initiated by the family.
      Alysha was sick in the morning.  The staff aren't sure of the cause.   Ron initiated some speech therapy today where he was getting Alysha to say "ah" and "hi."  Alysha and Ron did the usual arm stretch exercises, walked and rolled around the unit and watched a movie together (The Incredible Hulk).
       Alysha had visits from Dawn and Beth who brought her a special healing blanket blessed by the church. Carolyn came in the evening for a visit and.  Auntie Shell and Alysha had a cyber visit through face-time on their iphones.  In the picture below Alysha is in a wheel chair that reclines.  Behind her you can see the feeding pump with a bag of beige coloured formula hanging above it.  To the right at the back is the grey and orange hoist they use to move Alysha from bed to chair.

Dawn, Alysha and Beth have a visit.

Alysha update October 12/12
Alysha tries to talk on the phone.
      Alysha was on the tilt table today raising her arms, moving her head left and right, and looking up and down. Ron asked that she shake his hand and she did this. 
      Freed from all breathing tubes and extra oxygen, Ron took Alysha for a roll around the unit in her chair to the window.  While she was gazing out the window, Lisa called Alysha and Ron on the phone.  Ron put the phone up to Alysha's ear so that Lisa could talk to her.  Lisa asked Alysha to say hi to her and she tried to. It came out as a nondescript sound, but she produced it again when Lisa asked her to repeat it.  She made more vocalizations as greetings to the nurses on the roll back to her room.  Ron plans to practice speaking with Alysha through the weekend.  There is a plan for a speech therapist to consult with the family regarding speech rehabilitation in the next week.
      Pepere and Pierrette had a final visit with Alysha before they head back home.  They had been surprised with Alysha's improvement so far.  They gave her big kisses and wished her continued success with her recovery.

Alysha update October 11/12 - A BIG DAY
Alysha stands & tracheostomy is removed.
      Today was such a wonderful day of progress for Alysha.  Staff from the 9th floor of the hospital that specialize in brain injuries came up and consulted on Alysha's case.  They inquired about whether or not Alysha had tried to stand.  They suggested a trial of standing when they heard it hadn't been done before.  They started by having Alysha sit (supported) on the side of the bed.  They asked Alysha if she would like to try standing up.  Alysha responded with a big smile.  Taking this as an affirmative answer they supported Alysha to a standing position beside the bed.  After some time standing, Alysha sat back down on the side of the bed.  They asked her if she would like to try standing again and received another smile as an answer.  Up she went again into a supported standing position.  Lisa and Rich were ecstatic.   This was not the end of the good news today.
      Alysha has had her tracheostomy cannula corked for more than 48 hours today without any concerns.  Over the past week they have gradually decreased the size of the inside cannula until today when they removed it all together.  There is no longer a plastic airway protruding from Alysha's neck.  They taped a piece of fabric over the hole in her neck and expect it to fully heal on it's own over the next couple of weeks.
  

The tracheostomy tube is removed

Alysha update October 9th and 10th /12
The tilt table goes missing; The day-sitter is retired.
      Lisa had returned to the hospital to find that the tilt table was missing from the corner of Alysha's room where it was stored in between therapy sessions.  A bit of reconnaissance and the table found it's way back to Alysha's room for a fantastic therapy session.  Alysha's tracheostomy was corked on October 9th at 9:30 am and remained corked through the 10th and on-going.  Alysha has been more responsive and smiling in the past few days.  The family is hopeful that this is a sign of good things to come.
      Staffing has been cut back for Alysha because her health has improved and the acuity of her needs is much less than when she was first admitted to this floor.  The hospital no longer has a day-time "sitter" (someone who is paid to watch Alysha and alert a nurse if Alysha needs something).  With a family member there every single day during the day it was felt by the hospital that the sitter was no longer needed during the day.  Presently they still have a sitter providing one to one observation of Alysha at night.

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