Alysha Rose: January 2013

Thursday, 31 January 2013

The Road to Recovery - Week 28

"Let your hopes, not your hurts shape your future."

Robert Schuller

NOTE: You can now expect weekly updates.

Homecoming Party

A great time was had by all at the welcome home party for Alysha on the weekend. Alysha's family, aunts, uncles, grandparents, cousins, second cousins, friends and well wishers from the community came over to celebrate Alysha's homecoming. Celebration and laughter, good food and friends provided a considerable amount of emotional and physical therapy for Alysha and her supporters.

A letter from the President and CEO of Georgian College.
This letter is being shared with the permission of Alysha and MaryLynn West-Moynes.

Alysha and Lisa visit the Ontario Works office in Midland.

Now that she is home Alysha qualifies for some social assistance - financial aid. Lisa and Alysha began the process of applying for the Ontario disability support program (aka disability pension.) This is a fairly involved process with a lot of paperwork that needs to be filled out by Alysha's doctors and therapists as well as her family. Lisa found the staff very supportive when guiding Lisa and Alysha through the application process and paperwork. Alysha will receive a small amount of money per month that will help to cover a fraction of her living expenses. The costs of her medications will also be covered but Lisa isn't sure if this includes the Botox injections. Lisa will be reimbursed for travel costs related to Alysha's ongoing care and therapy including gas and parking. Financial assistance for Alysha's family will come in the form of tax breaks. This will not make up for Lisa's lost income (as she has had to leave her full time job to care for Alysha) but it is better than nothing. Please click on the link below to review information about the Ontario Disability Support Program at the Ontario Ministry of Community and Social Services website.

Ontario Disability Support Program

Update on Legal Guardianship.

A court date has been set in February for Lisa to be given legal guardianship of Alysha. This process was initiated months ago. Click on the link below to see earlier posts about this process that began September 12/13.

Week 8 Initiating the process for Legal guardianship

Update on Therapy.

Lisa received a phone call on Friday that Alysha's ongoing rehab treatments will start Feb12 at the Rumsey Rehab Center in Toronto. Alysha and Lisa were expecting to start this rehab sooner so they are enjoying their reprieve from the work of therapy and travelling to Toronto. They are still on a wait list for rehab in Barrie, much closer to home.

Alysha's rehabilitation activities haven't stopped just because she is not attending therapy sessions in Toronto. Yesterday a batch of chocolate chip banana muffins provided an opportunity to practice standing at the counter and coordinated mixing movements. This particular therapeutic exercise had the added bonus of a fresh, warm, delicious treat to be enjoyed at it's completion.

Alysha is able to feed herself "finger foods," that can be put in a bowl such as grapes, fruit pieces, cookies and chips. Lisa reports that Alysha usually crushes the chips accidentally on the way to her mouth. Her fine motor skills are still in need of refining. As far as using cuttlery goes, Alysha has a difficult time holding the common small and light fork and spoon options. At the rehab center they had larger forks and spoons that were weighted. These were easier for Alysha to use. Lisa will be looking into purchasing some of this special cuttlery for Alysha to be practicing with. For the present time, Lisa continues to feed Alysha most of her meals by bringing the food to Alysha's mouth.

Thursday, 24 January 2013

The Road to Recovery Week 27

"In the midst of winter, I found there was, within me,

an invincible summer." (Albert Camus)

NOTE: You can now expect weekly updates.

Please join us in welcoming Alysha home.

Welcome Home Party/ Open-house/ Pot-luck

Saturday January 26th

There will be a Welcome Home Party/ Open-house/ Pot-luck for Alysha at her home in Elmvale on Saturday January 26th from 1 pm to 6 pm. Everyone is welcome. Please drop in and see Alysha. Stay a short while or stay the entire time. All well wishers are welcome. Please bring a dish for a pot-luck meal if you will be staying over the dinner hour. RSVP to Lisa (705) 322-5372. You can leave a message on the answering machine. If you need directions please leave a message and your phone number and Lisa will call you back.

Here is a video of Alysha inviting you to her welcome home celebration.

"Hi. I'm home and I'm inviting everyone to my welcome home party and I'm ---???---??? (giggle). Hoping you can come. Thankyou."

Sunday, 20 January 2013

The Road to Recovery - week 26

"A bridge of silver wings stretches from dead ashes of an unforgiving nightmare to the jeweled vision of a life started anew." (Aberjhani, The River of Winged Dreams)

NOTE: You can now expect weekly updates.

A Meeting with top administration at St. Michael's Hospital
Alysha and her family were invited to a meeting at St. Michael's Hospital to review her complete course of care within that institution. This meeting took place late in the week. Lisa, Rich, Justin, Ron and Alysha attended the meeting. From the hospital, the Vice President of the Hospital, the Chief of staff, the surgeon who performed Alysha's surgery and was her attending physician throughout her stay, and the patient advocate were in attendance.
The meeting was disappointing. The family was hoping for answers to the questions they continued to ask throughout Alysha's stay like, "What really happened down in the CT scan? How long was the delay between Alysha's heart stopping and the initiation of CPR? Why was Alysha discharged to a care floor that lacked the expertise in suctioning and other care strategies for a severely brain injured, non verbal, non mobile patient? Why did the hospital not help to facilitate Alysha's transfer to the brain injury floor the hospital is renowned for? What caused the huge red welt and swelling Alysha was sporting on her face when they returned her to the ICU after discharging her to a patient care floor the day before? What in fact happened in relation to the code blue that returned Alysha to the ICU in much worse shape than she was discharged the day before (in fact with what the family to believe further brain injury?) These questions were shared with the doctors and staff at the hospital in numerous prior multidisciplinary meetings and debriefings. The family was hoping to receive the long-awaited answers at this meeting. Unfortunately no meaningful answers were shared. At this meeting, the family heard the same accounts of Alysha's care they had heard before. When it came to the areas of care of particular interest, the family heard the same comments that were heard in previous meetings such as; "we are not sure, we are unaware, we will have to review the notes." The absence of Alysha's medical chart was a feature of this meeting as well as all of the other meetings, so once again the professionals lacked a quick, accurate reference when questions were asked and clarifications were sought.
The professionals at this meeting assured the family that this experience had impacted them and that they would look into possible improvements in the quality and safety of patient care at their hospital as a result of what they had learned from Alysha's case. This was very dissatisfying to the family. After 6 months of the hospital reviewing Alysha's care and her hospital chart and countless hours of feedback from Lisa, the family was hoping for some acknowledgement of the mistakes the hospital had made. The family was looking forward to hearing the plans the hospital was putting in place to ensure those mistakes didn't happen again. The professionals at this meeting shared no such acknowledgment or plans.

Alysha returns home permanently.
Finally, after 6 months of care in health care institutions, Alysha was discharged home from the Toronto Rehab Center on Thursday January 17th. It was with great relief and excitement that Alysha, Lisa, Rich, Justin and Ron packed up her room at the rehab center and drove up hwy 400 toward home.
At a multidisciplinary meeting on Wednesday of this week, the staff reflected on Alysha's success in their program. They all agreed that an earlier discharge date of January 17th was appropriate and well earned. For Alysha's final therapy session, the staff organized a finish line for Alysha to break through at the end of her walking practice. I have included some pictures with the permission of the staff at the rehab center. Please notice how Alysha requires much less support walking now than she did prior. (Compare by clicking this LINK to a previous post December 1st week 19)
This starts a new chapter in the rehab process for Alysha. Starting in another week Alysha and Lisa will drive to Toronto to the Rumsey Centre (another location of the Toronto Rehab Institute) to continue to receive rehab therapy as an outpatient. They will do this 2 times a week.
There will be a Welcome Home Party/ Open-house/ Pot-luck for Alysha at her home in Elmvale on Saturday January 26th from 1 pm to 6 pm. Everyone is welcome. Please drop in and see Alysha. Stay a short while or stay the entire time. All well wishers are welcome. Please bring a dish for a pot-luck meal if you will be staying over the dinner hour. RSVP to Lisa (705) 322-5372. You can leave a message on the answering machine. If you need directions please leave a message and your phone number and Lisa will call you back.

The Finish Line

She Made It! A New Journey Begins.

Alysha says goodbye to her therapists

Wednesday, 9 January 2013

The Road to Recovery - Week 25

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." - MLK Jr

Alysha has a break down over her memory loss.
On their drive home from the hospital on Friday January 11th, Alysha asked her mom what month it was. Lisa told her it was January. Alysha looked puzzled and asked if she had missed Christmas. Lisa reminded Alysha that they had a big King Family Christmas on Christmas day with all her aunts, uncles cousins and Nana. Alysha started to cry. "What happened to me mom? Why am I so stupid?" Lisa began a review of what happened starting with the routine tummy tuck surgery. Alysha didn't remember having the tummy tuck. In fact when Lisa spoke about it, Alysha had a confused look on her face. "If I had a tummy tuck, why do I have all this extra skin on my abdomen?" The fact is that since her surgery Alysha has lost more weight and certainly muscle mass and her body no longer fills out her skin. Her loss of muscle has also changed the shape of her body and Alysha has noticed this. Lisa went on to review the complications of the surgery that caused her heart to stop for 40 minutes which in turn caused brain damage. Alysha remembers the beautiful, bright, bubbly, woman she used to be. One who could move with ease, run, and drive a car and lift up her cousins and babysit and work and go on dates. Alysha was overcome with the frustration of the heart breaking limitations she now faces and she began to sob uncontrollably.
Alysha's comments about Christmas certainly brought the family's concerns about Alysha's memory loss and capabilities to the forefront. When they returned to rehab the following Monday, Lisa asked for an evaluation of Alysha's memory capabilities and limitations. Unfortunately Lisa was told that would take weeks to organize and they wouldn't be able to facilitate this before Alysha's discharge date from the Rehab Center. The occupational therapist was able to shed some light on Alysha's short term memory recall. She told Lisa that after every session, she gives Alysha 4 words to remember for the session the following day. With Lisa there, she asked Alysha what the words were from her previous session. Alysha told them she didn't remember. When the therapist prompted her with, "one of the words was an animal." Alysha recalled all four words starting with rabbit. We are very interested in having Alysha's cognitive/memory function assessed so we can better understand how to support her and work around her limitations.
It looks like Alysha will be discharged from the Toronto Rehab Center without having a vision evaluation despite a request from the family that this be done at a multidisciplinary meeting just after Alysha's admission to the Center. This seems like a pretty big oversight on the part of the Rehab center and is particuarly disappointing to the family.

Update January 9/13
Alysha has been continuing to improve at the Toronto Rehab center. She stays as a resident of the center from Monday morning until Friday afternoon and goes home each weekend. Her target discharge date from this residential rehab program is January 25th but Alysha is strongly advocating for her own release from the residential portion of this experience as soon as possible. Since she has spent so much time at home lately she is really resistant to staying at the center between her daily sessions. Each weekday afternoon as it get's closer to the time that Lisa heads home for the day, Alysha gets more and more upset. "Mom, don't go.", "Mom, I want to go home." She repeats these words over and over again and cries alligator sized tears. During one session of, "I want to go home," on Monday of this week, Alysha pushed her call bell to summon the nurses. Lisa asked Alysha, "Why are you pressing the call bell?" Alysha responded, "I want to tell the nurse I don't want to stay here any more."
At home on the weekends, Alysha is improving her speaking, balance and strength. So much so that upon her return to therapy each Monday morning, all the therapist comment about the improvements they can see in Alysha since before the weekend.
Two additional therapy sessions have been added to the original 3 that Alysha had when she started at the Toronto Rehab Center. They have added a half hour standing therapy session and a half hour recumbent bicycle workout to the original, physiotherapy, occupational therapy and speech therapy sessions.
Alysha is also showing a lot of improvement in her fine motor skills. When she was visiting on the weekend, she was hungry, so I offered her an oreo cookie which she held in her own hand and fed herself. During her therapy sessions at the center, Alysha has been playing Connect Four with a therapist. She has been picking up the small round plastic pieces and placing them herself. Frankly she has been placing them in such a way that she usually wins the game.
One further exciting piece of news. Alysha has finally agreed to have Botox injections. The doctors recommend that she receive the injections in her left wrist, left elbow, left shoulder and left foot. This special treatment is not covered by any drug plans. $450.00 per location.
( Click here to go to the post from December 13th week 21 and see links in the post from December 13th - week 21 for information on Botox and the spastic muscle disorders it treats.)
I have included images of the Connect Four game she has been playing and the Camelbak container she has been using to independently drink from when she is thirsty.

Instant classic. Our spill-proof, BPA-Free eddy Bottle makes it easy to stay
hydrated on the go. Redesigned to provide faster flow and enhanced durability.

Alysha and Justin hanging out at the Rehab Center between therapy sessions.

Friday, 4 January 2013

The Road to Recovery - week 23 and 24.

"Alysha's life is our most treasured gift this holiday season."

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.")

Update January 5/13.
Hockey and Hot Tub
Alysha had a busy Saturday. It the morning our social butterfly headed to the local arena and watch her cousin play hockey. When she was there she was out of her wheel chair watching the game from a standing position along the boards. This provided 20 minutes of standing therapy which is the same amount of time spent developing this skill at the rehab center. Alysha was rewarded with a, "Win," for her cousin's team.
After hockey in Elmvale, Alysha was off for an afternoon of out-door hot tubbing in Alliston. Lisa was hoping the water would offer Alysha some relief from the pain she has been having related to the muscle spasms in her left wrist, elbow and shoulder. Alysha enjoyed the warm water, and appreciated the buoyancy it afforded. This was the first time Alysha has been submersed in water since the end of July. Getting into the hot tub on the other hand was a challenge and a bit of a spectacle. Dressed in their robes, Lisa and Alysha danced their way down the stairs leading away from the house and up the two stairs into the hot tub. Then there was a long pause when Alysha's slippers and robe were removed. Next, she sat on the edge of the tub and swung her legs around to be inside the water. Then a graceful slip down into the warm relaxing water.

Alysha and Aunty Michelle at the Elmvale Arena

Merry Christmas
It was so nice to have Alysha home for an extended period of time over the holidays. Alysha really enjoyed it as well. There was shopping and celebrations all week long, at Lisa's house, Ron's house and our (Aunty Marcia and Uncle John's) house. Alysha had a busy week, in an out of vehicles and houses. It takes a lot of concentration and effort and energy for Alysha to complete the usual daily-living activities of getting up, getting dressed, going to the bathroom, going up and down the stairs and eating. It is even more exhausting for Alysha to leave the house and visit or run errands with her family. By 5:00pm on Christmas day while we were all together at our house, Alysha started asking to go home. At the rehab center she is used to going to bed at 4:30 and staying there until Lisa returns the following morning at 8:00 am. It didn't surprise us she was wanting to go home. She stayed a few more hours and participated in a gift exchange, ate dinner and desert with the family and then headed back home for a well earned rest.

Alysha, Justin, Rich and Lisa

Moving about her house.
When she is home, Alysha moves about her house using a combination of her wheel chair and supported walking. The muscle for the wheel chair is provided by family members for the most part. Alysha does move her own wheel chair slightly forward and back by pushing her feet against the floor. She still requires assistance transferring from bed to wheel chair or lounge chair to wheel chair. Alysha's house is a back split with 5 stairs between the main floor and the bedroom and bathroom floor. In order for Alysha to get to her bed or use the bathroom, she climbs (with assistance) up and down those stairs numerous times a day. I was able to see her do this. With her arms around Lisa's shoulders, both mother and daughter face each other, Alysha provides her own power, and Lisa provides balance and guides the exercise with her body and voice. There was counting and, "right foot down," and, "don't step on my foot," and, "just one more step," and a bit of laughter. They successfully arrived at the foot of the stairs. It looked like a well choreographed dance.

Independence with drinking
Just before christmas Lisa purchased a Spill proof sport drinking container from Mountain Equipment Coop. This container has a wide, built in straw through which Alysha can draw her drink from without having to tilt back a cup. With this container Alysha is able to have a drink whenever she wants one. Lisa fills it with Alysha's beverage of choice and then sets it on her lap and Alysha is able to pick it up off her lap and bring it to her mouth and drink from it all on her own.

A visit with her horse.
On the first day of 2013, Alysha was out at the barn visiting with her horse - Chocolate.