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."
"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."
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| 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.
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| 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.
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