Not everything that is faced can be changed but nothing can be changed until it is faced. (James Baldwin)
Alysha update Sept 10/12
Sleep at long last.
Alysha finally fell asleep last night at 11:00 pm. She slept through the night and through most of the day today. The neurology team came up to see Alysha but she was peacefully sleeping so they were unable to do their assessments. The medication and phsych teams did not come to do their assessments today.
Today Alysha's trach was corked for 8 hours. Physio had Alysha sitting up at the side of the bed but Alysha just wanted to sleep, so the session was cut short.
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| Alysha is resting Recovery is hard work |
Alysha update Sept 9/12
Elusive Sleep.
Alysha's dad did indeed stay the entire night with Alysha the night of September 8th-9th. Once again Alysha didn't sleep any of the night. Ron was busy hoisting her up in the bed, wiping her down with a cool cloth, rolling her onto her side and comforting her. On a few occasions he thought he had succeeded in getting her to sleep only to have her wake up minutes later. Even after her morning medications she remained awake and restless.
Throughout the day sleep continued to evade Alysha. She sat in her chair for 4 hours today, but they didn't cork her trach. Visitors today found her tired and pale. Ron reported that she didn't exibit as many of her repetitive movements but he suspects that is more a function of her exhaustion than of any improvement in her condition.
Aunty Shell, Nana, Jayden, Abby, Carolyn, Deanna, Memere and Ron all visited with Alysha today.
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| Alysha and her cousin Jayden |
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| Alysha and her Auntie Michelle |
Treatment for oral thrush after a 5 day delay.
This morning, the medical staff person working with Alysha got her right up and into a chair. Lisa braided her hair and reported that Alysha's involuntary movements were less frequent.
Alysha looked distressed when they attempted to cork her trach in the morning. Lisa theorized that her throat might be sore, which is why Alysha would prefer to have breathing occur at a level lower than her throat. As she was working through this theory she had a "eureka moment," linking a diagnosis of thrush (oral yeast infection) with a possible sore throat. The diagnosis was made 5 days ago but the treatment hadn't started. Lisa successfully campaigned to initiate treatment ASAP. She also requested Alysha be investigated for additional side effects of yeast.
Later in the day they did cork Alysha's trach for 1.5 hours without much resistance from Alysha. Ron reports that Alysha had a very restless afternoon despite receiving her daily medications that are supposed to relax her.
There was some excitement about Ron (Alysha's dad) staying for the night to help with Alysha's care. The staff on the floor invited an ICU nurse up from the 4th floor to inform Ron that he couldn't stay the night because Alysha is in an area where the patients are all women. Ron told them he wasn't leaving his daughter and from the last message I received from Ron...he was staying. Given how busy Lisa was through the night previously with Alysha, I immagine the staff will be happy with Ron's extra help as they continue to have Alysha in an area of the hospital that is understaffed to meet her needs.
Alysha update Sept 7/12
A long night for mother and daughter.
Alysha and her mother Lisa spent last night outside the ICU. Alysha was restless the entire night and Lisa was awake and busy most of the night repetitively hoisting Alysha back up on the bed and helping with Alysha's personal hygene.
Alysha continued in this restless state untill her 2:00 pm medications and then, at long last, fell asleep.
The physiotherapist was in again today and had Alysha practicing sitting at the side of her bed. Lisa spoke with the doctor responsible for overseeing Alysha's care for the day and there is a plan for assessments by the medication, neurology and physch teams on Monday. The family hopes that they can find a medication that will help with the involuntary movement and begin to figure out Alysha's level cognitive function/ability. (Cognition is a group of mental processes that includes, attention, understanding, perception, memory, understanding language, solving problems and making decisions.)
Alysha update Sept 6/12
Out of the ICU for the 3rd time.
Alysha moved out of the ICU again today. Her supports were increased to help with the transition to a less supervised care model. Over the next few days a nurse and respiratory therapist from the ICU will be regularly checking on Alysha. Alysha has once again been assigned a "sitter" and Lisa is staying the night to help with Alysha's care. Lisa felt reassured that the Charge Nurse on the floor today understood the family's concerns.
The family was dealt a heavy blow today when they were told that it is expected that Alysha won't ever walk again. The best that we can hope for is that Alysha can weight bear to help with transfers in and out of beds and chairs. Alysha will require a special wheel chair that will accommodate her spastic back arching. It is likely that she will not be able to move her wheel chair on her own. Plans are being made to fit Alysha for her specially designed wheel chair in the near future.
This inevitable information came from a physiotherapist who has developed a nice rapport with Alysha and her family. Lisa appreciated this woman's candor.
Today, Alysha's story made the front page of the Barrie Examiner, SILObreaker and the Owen Sound Times. The story was also picked up by Georgian College where Alysha was enroled in the Tourism and Travel Program. You can read the articles by clicking on the links below.
Link- Georgian student fighting for life in hospital
Link- Ordinary procedure leaves young woman fighting for life
Alysha will require expensive assistive devices to move toward independence. This was confirmed today by medical staff. A trust fund has been set up to collect donations from the public to help cover the expense of these medical aids.
An account has been opened at Elmvale TD Canada Trust, Branch/Transit no: 24002, Account number: 03406303593. All contributions are welcome.
Alysha update Sept 5/12
Alysha's new feeding tube - PEG tube
Today, through a procedure called percutaneous endoscopic gastroscopy, they placed a feeding tube (PEG tube) into Alysha's stomach through her abdominal wall. This replaces the feeding tube that previously entered Alysha's stomach from her nose (nasogastric tube or NG tube). In the long term this will be more comfortable for Alysha as she no longer has a tube going into her nose. The family was informed yesterday at noon that the procedure had been arranged for that afternoon. Alysha had been given no food all morning and afternoon for 2 days in preparation for the procedure that was supposed to have happened yesterday but took place today. This evening it is time to test out the new tube and feed our hungry girl!
Alysha spent a couple more hours with her trach tube corked this morning. This afternoon, the family was informed that Alysha would be moving out of the ICU again tomorrow. As nothing seems to have improved since the last time she returned to the ICU the family has MAJOR concerns that this planned move is another premature attempt to move Alysha to another area of the hospital which is unable to manage the acuity of care that Alysha requires because of a lower staff to patient ratio than in the ICU. Lisa was informed that if she felt strongly about getting her daughter the care she requires outside of the ICU she was welcome to hire a full time RN at her own expense.
Attempts to gain knowledge of Alysha's condition, be included in her care plans and advocate for a more coordinated multifaceted approach to Alysha's health and recovery were unsuccessful today.
Alysha update Sept 4/12
Voluntary or Involuntary movements?
Alysha had an incredibly restless day. Her legs were flexing and extending all day long. She was arching her back and sliding down in her bed and chair. Her arms remained flexed with her hands at her neck, her wrists twisted and fingers firmly flexed. Usually Alysha enjoys being upright in her chair and she relaxes. Today however, Alysha's restlessness continued even in the chair. Lisa brushed and braided Alysha's hair and rubbed cream into her legs while verbally reassuring Alysha in an attempt to help slow Alysha's constant movements. I was with Lisa today and I watched her efforts have a relaxing effect on Alysha. We are unclear about whether or not Alysha's movements are voluntary or involuntary. If they are voluntary, do they represent Alysha's struggle to coordinate her movements or discomfort? If they are involuntary are they caused by brain damage or medication side effects?
We were asked by the staff to leave the ICU because they were doing rounds and were going to be getting to Alysha soon. "Rounds" is a regular formalized practice of reviewing Alysha's condition and care with staff and students while purposely excluding family members. Curiously, there is no regular, formalized practice of updating the family with the details of Alysha's care and condition. Lisa told the nurse that she was concerned about leaving Alysha sitting up in her chair while she was moving so much without someone to watch her. The nurse told Lisa not to worry as she (the RN) would be there with Alysha. Lisa was upset when she returned to the ICU to find Alysha was in her chair, unattended as her nurse was on her lunch break. Alysha had slid down in the chair, her head was resting on the arm rest, and she was distressed, red faced and sweating.
Lisa & Rich and/or Ron have been at the hospital every single day all day since July 24/12 and they are getting increasingly frustrated by the lack of information shared with them. They would like to see more transparency and accountability with regards to Alysha's care. They would like to be more fully informed about Alysha's evolving condition and more centrally involved in the decisions made about Alysha. The family recognize that Alysha's needs are complex and they wish for a more organized, coordinated, multidisciplinary approach to meeting Alysha's many needs. They are still awaiting full disclosure of events that lead to Alysha's present condition and the two previous returns to the ICU.
The family will be moving forward on their quest for more information and coordinated care by approaching the hospital based social worker assigned to Alysha's family and accessing the systems of patient advocacy offered at St. Michael's hospital in Toronto.
