Sunday, March 26, 2017

The sun is boiling the geraniums. I will go over the medical file for questioning. I am full of information. I still need to get information from the doctors who treated Rebecca but this looks like a long term project. My lawyer has asked for the other information we did not voluntarily get from the folks at Alberta Health, AHS and the Good Samaritan Society. I haven't made a complete list of the information I want but these include the following: 1) The Alberta Health Quality Audit of the Good Samaritan Extended Care at Millwoods -2014 2) The AHS Quality Review - 2014 3) Independent Consultant review of respiratory services by the Good Samaritan Society 2014 4) Any other complaints at Good Samaritan Society facilities 5) Other Audits Once all of this information is available to me -which may not be available until just before we go to court--then I will be ready to tell the story of system wide failures in the care of a defenceless handicapped woman who was treated shabbily by doctors at the Grey Nuns Hospital and without due diligence in terms of the requirements of their profession. Because they were determined to put a DNR order on my sister we lived in fear of premature termination from 2010 to 2015. Heck we still are so traumatized we don't want to take Rebecca to any Covenant Health facility. We also know now to be present with her in crisis no matter what and to ask for medical records to ensure that they haven't changed the scenery from sunny ways to Doctor Death



Julie Ali feeling happy.
Just now
The sun is blasting in my face. It is hard to see the computer screen.
I just called Sue so she can check up on Rebecca. For the past three times I've seen her the POC (portable oxygen concentrator) has been off, or the nasal cannula that delivers oxygen has been off. One time the rubber of the nasal cannula was even twisted, the POC was beeping and no one had done any checking. I simply took that cheap nasal cannula off so that it won't do this again. Then I went to VitalAire and got her a more expensive version of the nasal cannula that won't kink. She still needs checking though so I phoned Sue to ask them to check her.
I don't know if she is stable enough to bring home. If she is unresponsive at home I can't take her to Helva. I would have to call 911 and then we can't control which hospital she is taken to. Her respiratory specialist is Dr. Damant and he works at the UAH so we want her taken there. He is the only doctor of the three we have left who have known Rebecca for over twenty years. We lost the other two doctors because they didn't want to follow her any longer. I mean sure they gave expedient excuses of the family closed the file or in the case of the GP that he had not seen her for five years when he jolly well had but there you go. Doctors are human beings and sometimes very odd ones.
At least AHS rustled up two more doctors but I don't know if they understand respiratory problems very well. The next appointment with Dr. Damant is on April 18, 2017. We had an earlier one but I had not checked our mail box and so I didn't know about the earlier one. I asked Dr. Damant's secretary to simply e-mail the appointments as this way I don't miss these appointments by not going to the mail box. If you have a community mail box you sometimes have problems. For example for the last little while I have been getting mail that belongs to other addresses; my mail sometimes isn't there and it is all very strange. I prefer the door to door delivery.
The sun is boiling the geraniums. I will go over the medical file for questioning. I am full of information. I still need to get information from the doctors who treated Rebecca but this looks like a long term project. My lawyer has asked for the other information we did not voluntarily get from the folks at Alberta Health, AHS and the Good Samaritan Society.
I haven't made a complete list of the information I want but these include the following:
1) The Alberta Health Quality Audit of the Good Samaritan Extended Care at Millwoods -2014
2) The AHS Quality Review - 2014
3) Independent Consultant review of respiratory services by the Good Samaritan Society 2014
4) Any other complaints at Good Samaritan Society facilities
5) Other Audits
Once all of this information is available to me -which may not be available until just before we go to court--then I will be ready to tell the story of system wide failures in the care of a defenceless handicapped woman who was treated shabbily by doctors at the Grey Nuns Hospital and without due diligence in terms of the requirements of their profession. Because they were determined to put a DNR order on my sister we lived in fear of premature termination from 2010 to 2015. Heck we still are so traumatized we don't want to take Rebecca to any Covenant Health facility. We also know now to be present with her in crisis no matter what and to ask for medical records to ensure that they haven't changed the scenery from sunny ways to Doctor Death.
Right now Rebecca is recovering from a period of unresponsiveness yesterday when she was home with me. I don't know what the problem is. I do know she needs regular checking. In the case of handicapped citizens, family has to be present to ensure that appropriate and adequate support is present.
Sometimes family burns out. You have to take a break when you need to. This is why you need the staff at the Villa Marguerite to do the hard work of ongoing surveillance and care. But there also has to be regular family advocacy and support. Without us, there is no them.

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#NotDeadYet--My handicapped sister is not dead yet. The doctors who considered her rubbish and wanted to prematurely terminate her from 2010 to 2015 at the Grey Nuns Hospital were not allowed to do their junk because family stood in the way. Rebecca is still alive in 2017. Sure she has periods where she is still sick but so what?
Who gives doctors the right to unilaterally decide that it is a kindness to deny a patient in respiratory failure--intubation? If my sister is trialed for several hours on the BIPAP machine as she was yesterday night at the Villa Marguerite and remains unresponsive she needs to be intubated and managed in ICU. Or she dies. Simple as that. We took her back to the Villa Marguerite yesterday and she was put on the BIPAP. After time on the BIPAP, she was able to rouse and although still lethargic and sick, is able to get about.
Now think of this folks. If we had not yapped endlessly to three health ministers, the folks at Alberta Health, the people at AHS and the world do you think my sister would be here today? Nope. There are no protections in place to ensure that the voice of handicapped citizens is heard. And in the continuing care system, if you are separated from your advocate by retribution such as banning this situation is very problematic.
The government of Alberta needs to ensure protections are in place for handicapped citizens so that DNR orders do not get floated about like chips on a roulette table. These are our family members. We love them. We want protections in place. After all if the federal government has put in requirements for death by doctor in the case of the legislation for assisted suicide why are there no requirements for death by doctor in the case of the do not resuscitate business? Or is the GOA fully supportive of expedient decision making of the doctors that puts the health authority at risk of legal challenge and court decisions that will cost taxpayers major cash?
Families of the handicapped are speaking about premature termination. Our family members are not dead yet. Protect them.

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