Consent
I arrived to find James asleep on his bed in a strange position, somewhat sitting up with his neck overextended and his knees slightly bent. I gently woke him up to see how he was doing but he appeared very sleepy and unable to communicate with me. He attempted to write to me but his handwriting was almost illegible and he could not keep his eyes open. It felt like a step backward. I decided to give him a massage and let him rest.
I tried to find out information from the nurses but they were being quiet on the subject saying he did not have any therapy today and that he spent three hours in his chair. It seemed a little strange to me. I asked the nurse directly if they gave James a sleeping aide last night and he told me he would have to check the chart.
I brought Imogen with me today, hoping for her to spend time with the lively James that I have encountered all week. It was disappointing for her, no doubt, to see him similar to his state at Bellevue. Imogen asked to sit in the dayroom for family members while I worked on James. I did stretches with him and massaged his feet and hands.
We arrived late at the hospital today due to the timing of Imogen's soccer game.
I am disheartened. On the way out, I asked the nurse to please check James's medical record again so that I would have the name of the sedative they gave James to sleep. It was an antidepressant. I am not happy that they are giving James an antidepressant as a sleep aide. It is frustrating that I do not know my rights as his caregiver to give consent to the administration of drugs.
I felt very informed and part of the process at Bellevue. I thought that the rehabilitation at Mt. Sinai would be a similar process but it is not the case with regard to communicating with James's doctors. The therapists have been great but they are not responsible for administering the medications or the overall decision-making that is taking place regarding James's treatment. I also felt that the swallow test on Friday was not timed properly and made James rather ill in the process.
It is difficult for me to judge if I should be alarmed regarding the administration of medications as sleep aides and to know exactly how much sleep James is not receiving. It may be possible that his exhaustion is from the rapid change of being in the NICU to hours of activity since his arrival at Mt. Sinai. I understand that they are the professional rehabilitation team but at the same time, I am not the type of person to stand by and accept that their decisions are completely correct simply because they are doctors/therapists. I have seen the therapists debate with one another over the best strategies for James's case in particular. I refuse to assume that they will have the correct answers for every aspect of his treatment.
I have to be an advocate otherwise, I would never forgive myself if a mistake was made regarding his treatment and I was too meek to push for answers to my questions.
Imogen fell asleep on the couch after dinner. I think she has a cold. I have to get her to bed, myself included.
I hope that tomorrow, James is in a better place and that I have the opportunity to speak with a doctor. Most hospitals are quiet on the weekends so I may have to wait until Monday which may mean three nights of James being administered a drug I do not want him to take.
He is sleeping and that's what they wanted but I fear the price of that sleep.
I tried to find out information from the nurses but they were being quiet on the subject saying he did not have any therapy today and that he spent three hours in his chair. It seemed a little strange to me. I asked the nurse directly if they gave James a sleeping aide last night and he told me he would have to check the chart.
I brought Imogen with me today, hoping for her to spend time with the lively James that I have encountered all week. It was disappointing for her, no doubt, to see him similar to his state at Bellevue. Imogen asked to sit in the dayroom for family members while I worked on James. I did stretches with him and massaged his feet and hands.
We arrived late at the hospital today due to the timing of Imogen's soccer game.
I am disheartened. On the way out, I asked the nurse to please check James's medical record again so that I would have the name of the sedative they gave James to sleep. It was an antidepressant. I am not happy that they are giving James an antidepressant as a sleep aide. It is frustrating that I do not know my rights as his caregiver to give consent to the administration of drugs.
I felt very informed and part of the process at Bellevue. I thought that the rehabilitation at Mt. Sinai would be a similar process but it is not the case with regard to communicating with James's doctors. The therapists have been great but they are not responsible for administering the medications or the overall decision-making that is taking place regarding James's treatment. I also felt that the swallow test on Friday was not timed properly and made James rather ill in the process.
It is difficult for me to judge if I should be alarmed regarding the administration of medications as sleep aides and to know exactly how much sleep James is not receiving. It may be possible that his exhaustion is from the rapid change of being in the NICU to hours of activity since his arrival at Mt. Sinai. I understand that they are the professional rehabilitation team but at the same time, I am not the type of person to stand by and accept that their decisions are completely correct simply because they are doctors/therapists. I have seen the therapists debate with one another over the best strategies for James's case in particular. I refuse to assume that they will have the correct answers for every aspect of his treatment.
I have to be an advocate otherwise, I would never forgive myself if a mistake was made regarding his treatment and I was too meek to push for answers to my questions.
Imogen fell asleep on the couch after dinner. I think she has a cold. I have to get her to bed, myself included.
I hope that tomorrow, James is in a better place and that I have the opportunity to speak with a doctor. Most hospitals are quiet on the weekends so I may have to wait until Monday which may mean three nights of James being administered a drug I do not want him to take.
He is sleeping and that's what they wanted but I fear the price of that sleep.
Can you find yourself an independent professional advocate or someone to consult with independently--case worker/social worker type with experience with this kind of brain trauma to help you navigate these issues--to help you understand these decisions? Being personally familiar with many psychotropic drugs, I do think an antidepressant as opposed to a prescription sleep aid, might make sense. They might be less likely to compromise the quality of his sleep cycle. I know nothing about brain trauma, but I do know quite a bit about psychotropics if you want an opinion. forrester@rocketmail You are absolutely right to have concerns about overmedication. I'm not a crusader against pharmaceuticals--know first hand how critical they can be. But they are often over-administered for the convenience of medical workers and insurers as an inexpensive bandaid.
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