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)
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| 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.
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| 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.
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