Sunday, March 19, 2017

Too involved, to interfering, too life saving? --------When you get to see this sort of junk you have to do what brave folks like Velvet Martin has done which is to end the silence. These are matters of public interest, public health and public safety. These are matters that need public discourse. How are we to treat our most vulnerable defenceless citizens? Are we to put a premature termination order on them because they can't live without the supports and services that we deem too expensive to provide? Is checking on my sister every hour at NIGHT too expensive to provide? Why then are we spending billions on the dumb payout to the power companies for no damn reason? Maybe the dumb as bricks NDP folks could have put that money into the care of my sister and other defenceless people in the continuing care system? Maybe government should get its head out of its ass and work for ALL Albertans rather than the elite in government, public bodies and corporations? Maybe families should stand up for our family members and boot out the non-performers? I"d say yes.--

#GoodSamaritanSocietyLawsuit--The reality is that the handicapped require specialized services and supports that enable them to manage their lives. But what sorts of specialized services and supports are we talking about here?
1) Access to a GP and specialists in a timely fashion so that problems can be caught early and do not result in emergency visits or hospitalizations.
2) More scrutiny and checks. In my sister's case an hourly visit to her room to check the mask is on. What does this entail? The staff goes to her room, opens the door and sees if the mask is on. If it is, that is it. If not, put the mask on.
3) Awareness that any change in status is a sign of problems. For example the GI outbreaks resulted in increased carbon dioxide narcosis in my sister's case this past week that needed day time use of the BIPAP.
4) Understanding that the care plan needs to be followed. Check the POC, check it is on and the setting is correct. Check that she has the BIPAP on when sleeping in the afternoon. These are all minor matters but need to be done.
5) When there is an infection, more checks.
The reality is that folks in continuing care are busy and families need to be on the ball to ask for more helps. All these helps prevent hospital visits.
The solution is not difficult but it seems to be too expensive to provide.

LikeShow more reactions
Comment

Older boy has gone. It's a sad day. The week went so fast. It felt as if he had never left home.
But he will be back soon enough. One good thing about my sons are that they love their parents and are willing to spend time with us in addition to their friends.
I am getting used to doing with out the heir because the spare is still at home.
Younger boy can't do his project work as the computer died. We have to find a new computer and put an operating system on it and then all his previous software. It's a pain in the butt.
Outside there is a doughnut dusting of snow so I may be free of the hassle of shovelling but I do not know if the sun is fierce enough to melt the stuff. I will wait.
Rebecca may be out of GI outbreak seclusion. I will ask Sue to find out so she can come home next week for art therapy again.
While my brain is still functional I will enter the medical files. I will wonder to myself why I had find my sister in distress and take her to Medicentres and then to emergency. I have to wonder why staff did not detect these problems. For all my life saving work I got told that I was too involved. Yeah right. Being there to take my sister when she is very sick to the Medicentre and the emergency is considered "too involved" and what were the staff doing? I guess they were all recording the poor state of my sister without any sort of idea that she might be infected.
In the continuing care system we have a ton of recording of stuff but no one asking questions such as the ones I ask:
1) Is my sister experiencing a change in status?
2) If she is--like she is sleeping in bed all the time, missing supper and looking dishevelled --what does this mean?
3) If she is sleeping sitting before the TV without her oxygen cannula on and with the POC (portable oxygen concentrator) shut off does this not mean that she is pretty much out of it (i.e. confused--too confused to do her regular putting on of the machine and the nasal cannula)?
4) If she is getting increasingly sleepy over days -despite the fact that the BIPAP is being used--could it be that she is still experiencing carbon dioxide narcosis and should be checked with an ABG (arterial blood gas) test?
In one case we had my sister on 4 L of oxygen after she was sent home from the UAH in 2014. No one bothered to determine if the 4L of oxygen might be contributing to her months of confusion. Yet miraculously when I asked Dr. Damant to write a letter to staff to monitor oxygen saturations are kept between 89-94% warning about the problems of both hypoxia and carbon dioxide narcosis on Dec. 2, 2014-her pCO2 levels went down.They also did the day time use of the BIPAP, replaced the BIPAP machine with the low pressure warning signal with a loaner machine from VitalAire and then a new machine from who knows where so these measures also helped. Based on her 2015 ABG result -just dropping the oxygen rate to 2 Litres/ min eliminated the problem of carbon dioxide narcosis according to the nurse practitioner review of the case.
4) Instead of checking on just one diagnosis in Rebecca's case such as an infection it is also useful to rule out the carbon dioxide problem in the first place. For years there was chatter about the problems Rebecca was experiencing were due to the drugs she was taking and yet the drugs -according to the doctor --were fine when the respiratory condition was being managed. And no one told us that the amount of time on the BIPAP machine averaged out to minutes per day. With the drugs she was using, low use of the BIPAP results in problems and yet everyone felt there was nothing that could be done. It's a odd situation. Yet when a stay at home mummy comes along and asks for 1 hour checks at night so her mask is kept on suddenly we have better compliance which was pretty good before she got evicted from the Good Samaritan Extended Care at Millwoods.
5) Everyone is recording stuff but no one is thinking about what this stuff means. If the urine result from the hospital which is a catheter specimen is negative, if the drugs aren't the problem then perhaps folks should do an ABG? This is what was done in emergency when she was being checked out for the urinary tract infection over a period of confusion in 2014.
Again what the heck? If we had not taken her to emergency the period of confusion with the urinary tract infection business would have gone on for ridiculous lengths. The nurse practitioner reviewed the situation and wrote her conclusions which were that there had been no consideration of any other cause for the confusion.
In another situation we had her with eye infections for YEARS. I have not been able to find a clear infection control set up in her files with mask washing and machine checks done as required. Now at the Villa Marguerite place, they are washing her mask EVERY SINGLE WEEK. She has not had an eye infection at this new site since the mask washing has been done. Why then did she have so many eye infections at the Good Samaritan Extended Care at Millwoods? Why did she have pneumonia? Who was doing the mask washing and the hose cleaning? Who was doing the checks on the machines?
6) Mask fitting seems to be a matter that folks don't seem to understand. In 2010 we have the RT yapping about the mask fitting and how loose fitting means she isn't getting the pressure she needs to get benefit from BIPAP use. Yet the time I was observing staff, some staff didn't seem to note the leak on the machine until I got them to look at the machine and adjust Rebecca's mask. For this help I was told I was "interfering". Yeah, I was helping to get the care my sister should have got and I was "interfering".
7) In the end care problems of this sort are all detrimental to patient health and need to be followed up on. You go through the system but no one does what is required for whatever reason until the media hears about it. When the media hears about it they limit the amount of information put out as they don't want to get sued. So when families are not able to get the sort of care that family members need, when doctors tell us that such care is Utopian this is all junk talk in my mind. These are simple fixes. They need to be part of the system. And the excuses will end because the professionals involved need to get cracking and do the work to get up to speed. In the end the continuing care providers need to provide the oversight and quality control that are not present in my opinion. I don't expect Alberta Health to do oversight since the bureaucrats there simply cash in and milk the system while our family members suffer. It's all about turf, power and money in government and really everywhere else.
8) And don't think this junk ends with a complaint. You get retribution. I got banned. I have a lawsuit to go through. And what does government do about this? Nothing. This is what government has set up. The government could provide the audits to the public to verify the chatter of advocates but the GOA never does this until someone dies and the public gets steamed up.
I think the system as it is set up is not just, not a productive one and certainly family advocates need to be aware that the GOA will even try to take your family member into the public guardian's care if they find you too pesky. This is what I found out in the medical files. The folks at the UAH were considering legal advice and the folks at the Grey Nuns Hospital were trying to take over care through the Public Guardian to expedite eviction. It's pretty interesting how everyone works together to ensure that families are disempowered.
As for Rebecca? Well folks don't think she is worthwhile do they? Why else was that doctor saying she was a "palliative" case when she was not? Why else were the doctors at the Grey Nuns Hospital putting Do not resuscitate, do not intubate and no ICU when they could have done their jobs (which I did for them) and got the data card downloads that showed two incidents where the machine had not been put on resulting in harm for my sister? Why did the doctors fail to do their jobs? Maybe because to them my sister was worthless?
Well she might be worthless to the entire society but she is not worthless to her family.
When you get to see this sort of junk you have to do what brave folks like Velvet Martin has done which is to end the silence.
These are matters of public interest, public health and public safety. These are matters that need public discourse.
How are we to treat our most vulnerable defenceless citizens? Are we to put a premature termination order on them because they can't live without the supports and services that we deem too expensive to provide? Is checking on my sister every hour at NIGHT too expensive to provide? Why then are we spending billions on the dumb payout to the power companies for no damn reason? Maybe the dumb as bricks NDP folks could have put that money into the care of my sister and other defenceless people in the continuing care system? Maybe government should get its head out of its ass and work for ALL Albertans rather than the elite in government, public bodies and corporations? Maybe families should stand up for our family members and boot out the non-performers?
I"d say yes.
From Velvet Martin Protecting Canadian Children

LikeShow more reactions
Comment

No comments:

Post a Comment