A little bit of something beats a lot of nothing. Break the largest of difficult tasks into the smallest of steps and it can be done. (Dan Millman)
Alysha update October 1/12
Alysha attracts a crowd.
Lisa reports that Alysha had a fantastic day. She attributes this to the adjusted balance of medications and the fact that Alysha has slept well for the past two nights.
In the morning Lisa worked with Alysha with flash cards. The mental exercises were followed by muscle control and range of motion exercises. In the afternoon, subsequent to a small nap, Alysha spent some time on the tilt table. They were working at getting Alysha to move to the right and to the left and balance herself in an upright position. The physiotherapist, Lisa and Rich were so excited by how well Alysha was doing that they drew a crowd of nurses who came to see what the commotion was all about. Everyone seemed pleasantly surprised to see Alysha working so well with the therapist.
Lisa tried to video the tail end of the therapy sessions but the minute Alysha sensed that a picture or video was being taken she stopped performing.
Alysha update September 30/12
Alysha remains uncorked.
Ron reports that today was a sleepy day for Alysha. She was a little agitated this morning doing the "twitch" movements. She relaxed completely after her 2 pm medications were given and she was in her chair.
The Ear Nose and Throat specialist and the Respiratory therapist were in today to assess if there is anything obstructing her airway as Alysha doesn't seem to be tolerating the cork lately. They put a small scope through her nose and down her throat. They also removed her tracheostomy insert. They were looking for swelling or anything else that might prevent air flow. In the end, they found patent airways. The respiratory therapist tested Alysha with her finger over her trach and there was airflow up her throat to her nose and mouth. The therapist said that she would return later to try to cork her but she didn't return to do this.
Ron reports that Alysha woke up frequently this afternoon and each time it looked like she wanted to cry. He couldn't figure out a source of discomfort so he figured it might be pain from the scope this morning.
Ron also reported that the nurses and sitters were exceptional all weekend. He felt they listened to his concerns and did everything he asked of them. He believes that the weekend staff were very compassionate regarding Alysha.
Memere visited today.
Alysha update September 29/12
A full day of rehab with Dad.
Alysha was awake all day and sat in her chair for a couple of hours. Ron worked with her throughout the day to strengthen her arms and hands as well as stretching her calf muscles. Ron also worked with Alysha's flash cards.
At 5:30 Alysha started some involuntary repetitive movements. She was moving her upper body from right to left as well as having a "hiccough," type movement every 5 to 15 seconds.
Alysha's night-time medications were given a couple hours early today to prevent her from getting over-aggitated and unable to calm down for the night.
Alysha update September 28/12
Alysha tries to end her therapy session early.
Alysha had a restful day. The physiotherapist was in and had Alysha sitting at the side of the bed again. Alysha doesn't like these rehab sessions with the therapist and often cries when the therapy get's started. Alysha usually settles down after Lisa reassures her and tells her she needs to do her exercises to be able to go home.
Each therapy session at the side of the bed ends with the therapist supporting Alysha to adopt a position lying on her side and helping her to lift her legs on the bed. Mid-way through the therapy session today, Alysha moved herself into a side-lying position and brought her legs up onto the bed to indicate that she wanted the session to end.
Today, Lisa was looking into the medications that Alysha is taking. Alysha has been taking a drug called clonadine since her time in the ICU. Lisa asked what the purpose of this drug was. The staff told her it was for elevated blood pressure and pain. Lisa pointed out that Alysha is already taking another medication for blood pressure and she doesn't believe her daughter is in pain. Lisa questioned the necessity of this drug. The staff looked into this and agreed with Lisa that the drug is possibly unnecessary. Plans are being made to wean Alysha off the drug.
Alysha update September 27/12
Passive Standing and a new drug.
Last night Alysha received her Night-time medications 2 hours early. This helped her to relax and fall asleep. The drug that is being used to relax Alysha is Loxapine. When Lisa arrived in the morning she found that the repetitive, involuntary movements were continuing but they were infrequent and much less pronounced. Lisa described them as "twitches."
The psych team came to assess Alysha today. They advised that the drug Loxapine won't help to stop Alysha's twitches. They recommended she start taking clonazepam and continue to wean off of Loxapine. Clonazepam is an anti-anxiety medication that inhibits brain activity and is used to prevent certain types of seizures. Over time humans develop a tolerance to the anti-convulsant properties of this drug which limits it's long-term effectiveness. Some side effects of the drug include drowsiness and interference with cognitive and motor performance. This drug is addictive as it causes physical dependence.
Alysha had her second therapy session that involved passive standing supported on a tilt table. A tilt table is a portable padded table on which patient's lie supine with straps around their knees, hips and chest to keep them in place. The therapist gradually brings the patient to an almost vertical position by inclining the table mechanically. Benefits to passive standing include prevention of contractures, improved range of motion, reduction of muscle spasticity, prevention of osteoporosis, improved circulation, reduction of lower extremity edema, pressure relief to vulnerable ares to help prevent pressure sores, improved bowel and bladder regularity, and decreased risk of chest infections and pneumonia.
A neurology team is coming up from the 9th floor to advise on aspects of Alysha's care and rehabilitation. The family feel strongly that Alysha would be better cared for on the 9th floor, but appreciate any involvement from people who specialize in caring for people with Alysha's challenges.
Alysha update September 26/12
Repetitive, involuntary movement all day preventing sleep
Today was a tough day for Alysha. She didn't sleep at all last night and was repeating through constant involuntary movements that included her legs, arms and neck all day long. Lisa and Rich tried moving her to her chair and back to her bed to see if that would make a difference. They tried applying counter pressure or traction to the moving body parts but the automatic jerky movements persisted. When you try to massage Alysha's neck, back or arms in the area of the affected muscles, everything feels incredibly tight and we assume this must cause Alysha pain. Alysha's 2 o'clock medicines didn't do anything to decrease these movements. At times in the day, Alysha looked exhausted and cried. It is as though she is trying to sleep but can't because the movements prevent this.
Someone from the hospital came to speak to Lisa about custom making some splints for Alysha's wrists, hands and fingers. The splints are to prevent Alysha from holding a contracted/ flexed position in these extremeties. Long term contracture of these body parts will shorten some tendons and lengthen others causing pain and an inability to move normally in the future. The splints are not covered by OHIP or the hospital and represent an out - of - pocket expense. The specialist recommended custom made wooden splints that cost $80.00 each. Lisa was concerned that the recommended splints didn't have padding and was worried about the possibility of Alysha accidentally hitting herself in the face with involuntary movements. Lisa was also concerned about custom fitting Alysha with splints as Alysha's wrists and hands have been continuously getting smaller because of weight loss and muscle wasting. An alternative was proposed after listening to Lisa's concerns that involves non-customized padded splints.
Alysha attracts a crowd.
Lisa reports that Alysha had a fantastic day. She attributes this to the adjusted balance of medications and the fact that Alysha has slept well for the past two nights.
In the morning Lisa worked with Alysha with flash cards. The mental exercises were followed by muscle control and range of motion exercises. In the afternoon, subsequent to a small nap, Alysha spent some time on the tilt table. They were working at getting Alysha to move to the right and to the left and balance herself in an upright position. The physiotherapist, Lisa and Rich were so excited by how well Alysha was doing that they drew a crowd of nurses who came to see what the commotion was all about. Everyone seemed pleasantly surprised to see Alysha working so well with the therapist.
Lisa tried to video the tail end of the therapy sessions but the minute Alysha sensed that a picture or video was being taken she stopped performing.
Alysha update September 30/12
Alysha remains uncorked.
Ron reports that today was a sleepy day for Alysha. She was a little agitated this morning doing the "twitch" movements. She relaxed completely after her 2 pm medications were given and she was in her chair.
The Ear Nose and Throat specialist and the Respiratory therapist were in today to assess if there is anything obstructing her airway as Alysha doesn't seem to be tolerating the cork lately. They put a small scope through her nose and down her throat. They also removed her tracheostomy insert. They were looking for swelling or anything else that might prevent air flow. In the end, they found patent airways. The respiratory therapist tested Alysha with her finger over her trach and there was airflow up her throat to her nose and mouth. The therapist said that she would return later to try to cork her but she didn't return to do this.
Ron reports that Alysha woke up frequently this afternoon and each time it looked like she wanted to cry. He couldn't figure out a source of discomfort so he figured it might be pain from the scope this morning.
Ron also reported that the nurses and sitters were exceptional all weekend. He felt they listened to his concerns and did everything he asked of them. He believes that the weekend staff were very compassionate regarding Alysha.
Memere visited today.
Alysha update September 29/12
A full day of rehab with Dad.
Alysha was awake all day and sat in her chair for a couple of hours. Ron worked with her throughout the day to strengthen her arms and hands as well as stretching her calf muscles. Ron also worked with Alysha's flash cards.
At 5:30 Alysha started some involuntary repetitive movements. She was moving her upper body from right to left as well as having a "hiccough," type movement every 5 to 15 seconds.
Alysha's night-time medications were given a couple hours early today to prevent her from getting over-aggitated and unable to calm down for the night.
Alysha update September 28/12
Alysha tries to end her therapy session early.
Alysha had a restful day. The physiotherapist was in and had Alysha sitting at the side of the bed again. Alysha doesn't like these rehab sessions with the therapist and often cries when the therapy get's started. Alysha usually settles down after Lisa reassures her and tells her she needs to do her exercises to be able to go home.
Each therapy session at the side of the bed ends with the therapist supporting Alysha to adopt a position lying on her side and helping her to lift her legs on the bed. Mid-way through the therapy session today, Alysha moved herself into a side-lying position and brought her legs up onto the bed to indicate that she wanted the session to end.
Today, Lisa was looking into the medications that Alysha is taking. Alysha has been taking a drug called clonadine since her time in the ICU. Lisa asked what the purpose of this drug was. The staff told her it was for elevated blood pressure and pain. Lisa pointed out that Alysha is already taking another medication for blood pressure and she doesn't believe her daughter is in pain. Lisa questioned the necessity of this drug. The staff looked into this and agreed with Lisa that the drug is possibly unnecessary. Plans are being made to wean Alysha off the drug.
Alysha update September 27/12
Passive Standing and a new drug.
Last night Alysha received her Night-time medications 2 hours early. This helped her to relax and fall asleep. The drug that is being used to relax Alysha is Loxapine. When Lisa arrived in the morning she found that the repetitive, involuntary movements were continuing but they were infrequent and much less pronounced. Lisa described them as "twitches."
The psych team came to assess Alysha today. They advised that the drug Loxapine won't help to stop Alysha's twitches. They recommended she start taking clonazepam and continue to wean off of Loxapine. Clonazepam is an anti-anxiety medication that inhibits brain activity and is used to prevent certain types of seizures. Over time humans develop a tolerance to the anti-convulsant properties of this drug which limits it's long-term effectiveness. Some side effects of the drug include drowsiness and interference with cognitive and motor performance. This drug is addictive as it causes physical dependence.
Alysha had her second therapy session that involved passive standing supported on a tilt table. A tilt table is a portable padded table on which patient's lie supine with straps around their knees, hips and chest to keep them in place. The therapist gradually brings the patient to an almost vertical position by inclining the table mechanically. Benefits to passive standing include prevention of contractures, improved range of motion, reduction of muscle spasticity, prevention of osteoporosis, improved circulation, reduction of lower extremity edema, pressure relief to vulnerable ares to help prevent pressure sores, improved bowel and bladder regularity, and decreased risk of chest infections and pneumonia.
A neurology team is coming up from the 9th floor to advise on aspects of Alysha's care and rehabilitation. The family feel strongly that Alysha would be better cared for on the 9th floor, but appreciate any involvement from people who specialize in caring for people with Alysha's challenges.
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| Tilt Table |
Repetitive, involuntary movement all day preventing sleep
Today was a tough day for Alysha. She didn't sleep at all last night and was repeating through constant involuntary movements that included her legs, arms and neck all day long. Lisa and Rich tried moving her to her chair and back to her bed to see if that would make a difference. They tried applying counter pressure or traction to the moving body parts but the automatic jerky movements persisted. When you try to massage Alysha's neck, back or arms in the area of the affected muscles, everything feels incredibly tight and we assume this must cause Alysha pain. Alysha's 2 o'clock medicines didn't do anything to decrease these movements. At times in the day, Alysha looked exhausted and cried. It is as though she is trying to sleep but can't because the movements prevent this.
Someone from the hospital came to speak to Lisa about custom making some splints for Alysha's wrists, hands and fingers. The splints are to prevent Alysha from holding a contracted/ flexed position in these extremeties. Long term contracture of these body parts will shorten some tendons and lengthen others causing pain and an inability to move normally in the future. The splints are not covered by OHIP or the hospital and represent an out - of - pocket expense. The specialist recommended custom made wooden splints that cost $80.00 each. Lisa was concerned that the recommended splints didn't have padding and was worried about the possibility of Alysha accidentally hitting herself in the face with involuntary movements. Lisa was also concerned about custom fitting Alysha with splints as Alysha's wrists and hands have been continuously getting smaller because of weight loss and muscle wasting. An alternative was proposed after listening to Lisa's concerns that involves non-customized padded splints.
Alysha update September 25/12
Back to Back sleepy days.
Today was another sleepy day for Alysha. Alysha's trach remains uncorked. As you can see in the picture below there is a mask and attached hose that fits loosely over the tracheostomy opening. This mask merely delivers moist air to help with breathing. Alysha doesn't require the administration of supplimental oxygen.
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