What lies behind us and what lies before us are tiny matters compared to what lies within us. (Ralph Waldo Emerson)
Unnecessary suctioning and a curious finding.
The RN's reported to Lisa this morning that Alysha had a restless night and required frequent suctioning through the night. Lisa was surprised that Alysha needed the suctioning all night given she didn't require any suctioning while Lisa was with her during the day. Alysha has a strong cough and can cough the secretions out her trach tube. All that is required that someone grab the secretions at the end of the trach tube with a tissue. Lisa did this all day long and didn't understand what had changed that Alysha required suctioning at night. Lisa spoke to a nurse about this. Suctioning isn't a benign action. It causes irritation to Alysha's wind-pipe and it actually causes more secretions. When Lisa arrived in the morning Alysha was particularly restless and behaving as if she was distressed and in pain. Lisa noticed the unusual behaviour in her daughter right away. The nurses on the floor received a timely inservice on removing secretions from Alysha's airway today as a result of the possibly unnecessary suctioning that is happening when Lisa and Rich are not around. As time goes on it becomes more and more clear that the plastic surgery floor is an inappropriate place to continue to care for Alysha. The floor she was admitted to as a beautiful, healthy, bright 21 year old is no longer the appropriate place for our now severely disabled girl. More attempts will be made by the family to advocate for Alysha being cared for in a more appropriate area of the hospital that specializes in brain injuries.
Abigail, Zoe and I went down to visit Alysha today. Alysha was peacefully sleeping for 10 minutes at a time waking briefly to cough out some mucus and then falling back asleep again. While we were sitting around talking, Rich noticed that an Ambu bag was hooked up with oxygen running into it by Alysha's bedside. This device is used to deliver aritificial breaths for someone who is not breathing on their own. When asked about why this device was out and appeared as though it had been used, the nurses informed the family that they weren't aware of any need for it's use. Lisa will look into this further.
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| Ambu bag - resuscitator |
Alysha update September 22nd and 23rd/12
A testament to a mother's commitment.
Saturday was a sleepy day for Alysha. Ron, Deanna and Carolyn were with Alysha in the morning and Michelle and Jeanne were with her in the afternoon and evening.
Sunday was a productive day for Alysha, Lisa and Rich. After last week's depressing multidisciplinary meeting, Lisa has been hard at work organizing and implementing a plan to rehabilitate her daughter, build on her abilities and keep her motivated. Lisa was determined not to lose momentum with Alysha's physical rehab over the weekend as physiotherapy is a short-duration weekday occurrence. On 3 different occasions during the day on Sunday, Lisa and Rich worked with Alysha on her core strength (back, abdomen and neck), range of motion and movement on demand. Picture this. All 3 members of this family were on Alysha's bed. Lisa and Rich supported Alysha in a sitting position with Rich behind her and Lisa sitting at the foot of the bed in front of Alysha. Lisa provided an anchor for Alysha's hands and arms so she could pull herself to a sitting position. Alysha also practiced flexing and extending her legs and holding certain positions at her mother's request and with her guidance. At one point Alysha's arms were wrapped around her mother in a hug. Lisa asked her to hold her head up and look her in the eyes and she did this.
With brilliant insight, Lisa and Rich employed the physical therapy sessions at times in the day when Alysha was showing signs of physical "agitation." They found that responding to Alysha's movements with a physical therapy session reduced her agitation and non-productive movements.
Lisa also bought some flash cards for Alysha. She said, "If we've got to start back at the beginning like a baby we should start now." Today the flash card topics were colours and animals. Alysha seemed to pay particular attention to the animal cards. Lisa didn't ask Alysha to identify any of the images, she simply reviewed them.
This family is not going to sit by and let their daughter be written off.
Alysha update September 21/12
A responsive morning followed by inappropriate sedation.
On the heels of our bad-news meeting yesterday Alysha started off the morning with a great session with the physiotherapist. Alysha seemed motivated to hold herself up in a sitting position and showed good effort in keeping her head up. She responded accurately with corresponding movements when asked to kick her legs, both individually and together. The physiotherapist would touch Alysha's leg to indicate which one she would like to see moved. The morning session went so well that the physiotherapist said that she would return in the afternoon to teach Lisa and Rich some techniques for Alysha's rehabilitation.
After a fantastic morning, Alysha fell asleep and Lisa and Rich left to get some lunch. When they returned 30 minutes later Alysha's eyes were open. They greeted her enthusiastically but she looked sleepy. The RN then explained to Lisa that in the short time that Lisa was away, Alysha had awakened and was agitated so they gave her an extra dose of Loxapine (an antipsychotic drug) to settle her down. The drug sedates Alysha so there would be no opportunities for an afternoon re-hab session. Lisa was furious. It appears that the moment Alysha starts to move about like human's do, the staff try to sedate her. After being at her daughter's bedside for 2 months now, Lisa is a good judge of her daughter's agitation level. Yesterday in the multidisciplinary meeting Lisa shared that she thought the staff were over-medicating Alysha. They give her drugs as soon as she makes any movements instead of waiting until she is truly agitated. Lisa told staff yesterday, "my daughter should be allowed to move!" Lisa called the charge nurse and the plastic surgeon and pointed out the error that had been made today. As a result, the drug order was re-written from prn (as needed) to prn as per the family's determination. The extra doses of Loxapine are not to be given without the family's permission.
Interestingly, when we researched this drug, many of it's side effects are the same as the symptoms the drug is being used to treat. "Agitation, restlessness, drowsiness, droopy eyes, spastic muscle movements, fever." Another interesting side effect is excessive salivation (could this be why they had to uncork Alysha because of excessive secretions?)
Alysha update September 20/12
Multidisciplinary Meeting.
When Lisa arrived at St. Michaels' hospital in the morning she discovered that Alysha had experienced a set-back regarding her breathing. They had to uncork her tracheostomy in the morning because her lung secretions had increased. Alysha was unable to clear them with her coughs and required more frequent suctioning. This was not the end of the bad news today.
Lisa, Rich, Ron and Jeanne attended a multidisciplinary meeting about Alysha today. While everyone agrees that there is still a small chance of a better prognosis it is most likely that what we see now is how Alysha will remain. She is minimally responsive, unable to speak, walk, weight bear or control her bladder and bowels, and has periods of spastic muscle movements that involve her back, neck, legs and arms. They expect by looking at her brain scan results that Alysha is severely visually impaired, and has no short term memory. They showed the family a copy of Alysha's brain scan. Lisa said that there is no part of her brain that doesn't have widespread damage.
The family asked why it seemed as though Alysha was more able and responsive earlier in her recovery than now. They were told that it takes a while for the full extent of brain damage to manifest itself. The family was also told that it is possible that the code blue on August 22nd could also have caused further brain damage but there is no way of knowing for sure.
Rich questioned whether or not it is appropriate to have Alysha remain on the plastic surgery floor. He questioned how many other non verbal, immobile, severely brain injured patients the RN's on this floor had experience with. The hospital has a brain injuries program on the 9th floor and it was proposed that perhaps it would be best for Alysha to be cared for there. The plastic surgeon in charge of Alysha's care will be looking into this.
The family asked about more extensive rehab for Alysha. They were told that presently Alysha doesn't qualify for rehab. She needs to be able to respond to simple instructions like, "bend your leg, straighten your arms etc," Presently Alysha can't do this.
If Alysha is never going to qualify for rehab, then Lisa wants her daughter to get well enough to come home where Lisa believes that she can provide the best care for Alysha.
Alysha update September 19/12
Corked for 3 days.
Alysha has had her tracheostomy corked for 3 days now. The hospital staff will consider removing it when Alysha has gone 48 hours without needing to have secretions suctioned from her airway. They suctioned her last on the night of the 18/19 (Tuesday night).
Mom (Barb) and I visited with Alysha this afternoon. We saw the staff and Lisa and Rich move Alysha with the hoist from her chair to her bed. Her eyes were wide open for the ride and I thought they looked a little fearful but Lisa told us that Alysha enjoys the lift from location to location.
It was quite amazing to see Lisa and Rich organizing and doing the work of the safe transfer of Alysha to her bed. In the short time that we were there Lisa also coordinated Alysha's feeding that had been delayed past when it was supposed to be initiated.
Thanks to the help of the nurses in the unit, Lisa was able to get a copy of part of Alysha's chart, to review with the family's general practitioner. Lisa initially declined the nurses notes as they were offered separately and has since asked for a copy of those as well.
On September 20th there will be a multidisciplinary meeting that the family was invited to.
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