Leave hospital, Kaylee's father toldRemoved from Sick Kids after dispute with staff, dying baby's dad accuses nurses of assaultApril 30, 2009
Toronto Star
http://www.healthzone.ca/health/article/626684
This is today's bold headline in the ongoing saga of little Kaylee. There are so many things wrong about this article that I hardly know where to begin. Before I launch into the main points about nurses, however, there a couple of things that need saying.
The main lesson here about Kaylee and her story is...watch out when you decide to go to the media. It is a two edged sword and fickle at that. One minute you can be a media darling and the next you are public enemy #1. This is not a game for the faint of heart or hot of temper. Notice here that, where at one time Kaylee was a "miracle", now, the headline calls her "dying baby". She is, in fact, not dying. She is disabled from a neurological disorder. Her complete disinterest in just hauling off and dying is more than anyone can deal with right now...even though there are children out there living lives with Joubert Syndrome. Daddy's past is also creeping up on him...assault charges, drug charges...he is the devil now...possibly incompetent. Mom was portrayed in another article as being just too quiet...something has to be wrong there...it is a circus. From now on, you cannot believe anything you will read about Kaylee. My advice to the parents...shut up and ship out. Get the kid home with CCAC's help and stay there.
As for the nurses and the point of the story and this blog. Let me tell you a few things you will not like to hear. We have had an army of nurses come through this house and spent an inordinately huge amount of time with them in hospital. Nurses have skill sets like any other profession, and good and bad apples among them but there is no possible excuse for the fact that, for the most part, nurses are not very good at their jobs.
Now, of course, here is the little apologetic...right now, the one nurse I have helping here with my daughter is an absolute angel, the most pleasant, professional heavenly person I have had the pleasure of meeting and working with. Furthermore, here in Canada, things are very difficult for nurses. There is a drastic...dangerous...shortage of them. The majority left in the field are over 50 and looking longingly at retirement. Overall, nurses are now managing sicker people, with less help and more paperwork. They work overtime for a pittance, are treated like crap by the media and management. They are the backbone of medical care but they are undervalued. We and they are paying the price. Fewer young women are getting into nursing and the ones coming out are so bad it would make you cry.
However....as twisted as the news flash above is, I do not doubt the allegations of abuse made by the parents. Not for one minute. If you want to see some power tripping people, you just have to walk into a pediatric ward in a hospital and watch the nurses at work.
When a parent is just beginning to confront the monster that is the medical system, the nurses are your best friends. They advise, direct, give you hints, bring you blankets and look for all the world like the wonderful professionals their PR people make them out to be. After a while, when parents become savvy to the ins and outs of hospital care, things start to turn. There is nothing a bad nurse hates more than knowledgeable parents...and knowledgeable they become if they have an ounce of common sense. Suddenly, you become aware that the care is patchy and shoddy...sheets are not changed, bodies not washed, pumps, IV's, meds. poorly monitored. If you bring this up to anyone "in charge" you are now...the difficult parent...TDP. Difficult parents demand proper care, supervised children, correct and timely administration of medication. TDP asks too many questions, reads "confidential" charts (meaning, you read your kid's chart) and start asking about side effects, mixing drugs, withdrawal protocols...and they know when something is wrong with their child long before anyone on staff notices. In home care, the situation is appalling. Out of the 20 nurses that have come in and out of here, I personally had to train 17 on how to use a g-tube, how to put on briefs properly and how to position a person in a bed. They come into our home as the "experts" yet few have the necessary skills. Then we are supposed to leave them to care for our children, unattended. Not a chance...not in this house. Here are some of our experiences:
Hospital:
* one nurse in a room with 4 severely neurologically impaired children..none of whom can communicate... is not supposed to leave without calling in another nurse to cover...leave she did, and often.
* upon arriving at my daughter's bedside at 5 AM, which I did daily, I found her to be shaking violently with a heart rate of 240...not a typo...240...the nurse says to me, "you take over, I don't know what to do with her." What I did was go down the the critical care ward, find a lovely young doctor with whom I had formed a bit of a bond and called her up to the room. In 5 minutes, my daughter was surrounded by three peds. doctors, one of whom was head of peds. for the hospital.
* the golden rule of medication is that it is absorbed in 30 minutes. Should your child happen to vomit anywhere near that magical time, the debate is...did the med go in or not? It was a fact that my daughter's ability to metabolise meds was severely compromised by her damaged neurology. My daughter vomitted frequently...after one such episode, my husband had to raise his voice to a nurse to get her to give my daughter a re-dose of her medication..."There, are you happy now!?", she says...indeed, we were.
* Double dose of Tylenol...oops! "Don't worry hon, it won't hurt her"...except that acetametophin is highly hepa toxic (liver toxic) and people have actually died from it.
* it's time for meds...no nurse, no meds....wait, wait...husband goes out to chatty group..."Um, it's time for my daughter's meds"...OOOHHHH!! OOPS, forgot!
* for some reason, nursy is depressed. She doesn't want to deal with my daughter's bad night. She mixes a cocktail of every sedative that is PRN on my daughter's list...including the very awful Chloral Hydrate (which leaves a bad headache upon wearing off) and slams it into her.
* One parent spent hours calming her brain damaged son to get him to sleep (the child was in the screaming stage...they all went through it..not pretty). Parent walks out of room, finally, to get a break and to leave the child sleep. Nursy slams in behind her, turns on the light, flashes light in the kids eyes and does vitals...walks out. Kid starts screaming again. Parent goes back to work.
* child with yet another g-tube surgery vomits through the night...is very close to death from this. Parent asks..."Did he vomit?" Nurse answers..."no".
* when it is time for nurses to report to each other at shift changes, they do so by turning their backs to the kid. Nothing, absolutely nothing short of an earthquake will get these ladies to move from their appointed reporting...let alone a vomitting, shaking, freaking out child.
OK..now, on the home care front...take a break, go to the bathroom, get a drink...ready?? Here we go.
* ate our food, read our mail, butted in our conversations, mismeasured meds, fell asleep during school time, couldn't position child in chair for the life of her, couldn't put on her briefs properly. Had her for 4 years.
* repeatedly choked daughter with fluids (too much, too fast, in spite of constant direction), joined in all our conversations...had her for 2 years.
* threw up at the side of the road and called in sick...more than once...because she was hungover...lasted about 4 weeks
* totally missed the fact that my daughter had gone completely stiff, was wide eyed and had soiled herself...she was knitting, after all...and we found this out just because we checked in on her before we went to bed.
* child spent 2 hours with buckles the size of adult fists jammed behind her back
* walked away from child on narrow change table, almost tipped her completely out of her chair, left classroom where she was supposed to be supervising my daughter (with an E.A.) to make personal phone calls daily, burned child's mouth on hot beverage.
* one could make my daughter scream in pain when she was non-verbal...just by changing her briefs! I could go from the kitchen to my daughter's bedside to suction her faster than the fat slob who sat in the same room with her. This same piece of nameless expletives also told one of our dearest therapists that we were being cruel to our daughter by "stimulating her" and that we should just drug her senseless until she died.
* one got all her wedding invitations and bible classes planned during her shifts with my daughter
* bossy, bossy, bossy, yet knew nothing
This is just a sampling...there is actually more! Let it be your creed that if your child is in hospital or at home...make sure you supervise the nurse...god knows what will happen if you don't.
|
Leave hospital, Kaylee's father told
Removed from Sick Kids after dispute with staff, dying baby's dad accuses nurses of assault
April 30, 2009http://www.healthzone.ca/health/article/626684
This is today's bold headline in the ongoing saga of little Kaylee. There are so many things wrong about this article that I hardly know where to begin. Before I launch into the main points about nurses, however, there a couple of things that need saying.
The main lesson here about Kaylee and her story is...watch out when you decide to go to the media. It is a two edged sword and fickle at that. One minute you can be a media darling and the next you are public enemy #1. This is not a game for the faint of heart or hot of temper. Notice here that, where at one time Kaylee was a "miracle", now, the headline calls her "dying baby". She is, in fact, not dying. She is disabled from a neurological disorder. Her complete disinterest in just hauling off and dying is more than anyone can deal with right now...even though there are children out there living lives with Joubert Syndrome. Daddy's past is also creeping up on him...assault charges, drug charges...he is the devil now...possibly incompetent. Mom was portrayed in another article as being just too quiet...something has to be wrong there...it is a circus. From now on, you cannot believe anything you will read about Kaylee. My advice to the parents...shut up and ship out. Get the kid home with CCAC's help and stay there.
As for the nurses and the point of the story and this blog. Let me tell you a few things you will not like to hear. We have had an army of nurses come through this house and spent an inordinately huge amount of time with them in hospital. Nurses have skill sets like any other profession, and good and bad apples among them but there is no possible excuse for the fact that, for the most part, nurses are not very good at their jobs.
Now, of course, here is the little apologetic...right now, the one nurse I have helping here with my daughter is an absolute angel, the most pleasant, professional heavenly person I have had the pleasure of meeting and working with. Furthermore, here in Canada, things are very difficult for nurses. There is a drastic...dangerous...shortage of them. The majority left in the field are over 50 and looking longingly at retirement. Overall, nurses are now managing sicker people, with less help and more paperwork. They work overtime for a pittance, are treated like crap by the media and management. They are the backbone of medical care but they are undervalued. We and they are paying the price. Fewer young women are getting into nursing and the ones coming out are so bad it would make you cry.
However....as twisted as the news flash above is, I do not doubt the allegations of abuse made by the parents. Not for one minute. If you want to see some power tripping people, you just have to walk into a pediatric ward in a hospital and watch the nurses at work.
When a parent is just beginning to confront the monster that is the medical system, the nurses are your best friends. They advise, direct, give you hints, bring you blankets and look for all the world like the wonderful professionals their PR people make them out to be. After a while, when parents become savvy to the ins and outs of hospital care, things start to turn. There is nothing a bad nurse hates more than knowledgeable parents...and knowledgeable they become if they have an ounce of common sense. Suddenly, you become aware that the care is patchy and shoddy...sheets are not changed, bodies not washed, pumps, IV's, meds. poorly monitored. If you bring this up to anyone "in charge" you are now...the difficult parent...TDP. Difficult parents demand proper care, supervised children, correct and timely administration of medication. TDP asks too many questions, reads "confidential" charts (meaning, you read your kid's chart) and start asking about side effects, mixing drugs, withdrawal protocols...and they know when something is wrong with their child long before anyone on staff notices. In home care, the situation is appalling. Out of the 20 nurses that have come in and out of here, I personally had to train 17 on how to use a g-tube, how to put on briefs properly and how to position a person in a bed. They come into our home as the "experts" yet few have the necessary skills. Then we are supposed to leave them to care for our children, unattended. Not a chance...not in this house. Here are some of our experiences:
Hospital:
* one nurse in a room with 4 severely neurologically impaired children..none of whom can communicate... is not supposed to leave without calling in another nurse to cover...leave she did, and often.
* upon arriving at my daughter's bedside at 5 AM, which I did daily, I found her to be shaking violently with a heart rate of 240...not a typo...240...the nurse says to me, "you take over, I don't know what to do with her." What I did was go down the the critical care ward, find a lovely young doctor with whom I had formed a bit of a bond and called her up to the room. In 5 minutes, my daughter was surrounded by three peds. doctors, one of whom was head of peds. for the hospital.
* the golden rule of medication is that it is absorbed in 30 minutes. Should your child happen to vomit anywhere near that magical time, the debate is...did the med go in or not? It was a fact that my daughter's ability to metabolise meds was severely compromised by her damaged neurology. My daughter vomitted frequently...after one such episode, my husband had to raise his voice to a nurse to get her to give my daughter a re-dose of her medication..."There, are you happy now!?", she says...indeed, we were.
* Double dose of Tylenol...oops! "Don't worry hon, it won't hurt her"...except that acetametophin is highly hepa toxic (liver toxic) and people have actually died from it.
* it's time for meds...no nurse, no meds....wait, wait...husband goes out to chatty group..."Um, it's time for my daughter's meds"...OOOHHHH!! OOPS, forgot!
* for some reason, nursy is depressed. She doesn't want to deal with my daughter's bad night. She mixes a cocktail of every sedative that is PRN on my daughter's list...including the very awful Chloral Hydrate (which leaves a bad headache upon wearing off) and slams it into her.
* One parent spent hours calming her brain damaged son to get him to sleep (the child was in the screaming stage...they all went through it..not pretty). Parent walks out of room, finally, to get a break and to leave the child sleep. Nursy slams in behind her, turns on the light, flashes light in the kids eyes and does vitals...walks out. Kid starts screaming again. Parent goes back to work.
* child with yet another g-tube surgery vomits through the night...is very close to death from this. Parent asks..."Did he vomit?" Nurse answers..."no".
* when it is time for nurses to report to each other at shift changes, they do so by turning their backs to the kid. Nothing, absolutely nothing short of an earthquake will get these ladies to move from their appointed reporting...let alone a vomitting, shaking, freaking out child.
OK..now, on the home care front...take a break, go to the bathroom, get a drink...ready?? Here we go.
* ate our food, read our mail, butted in our conversations, mismeasured meds, fell asleep during school time, couldn't position child in chair for the life of her, couldn't put on her briefs properly. Had her for 4 years.
* repeatedly choked daughter with fluids (too much, too fast, in spite of constant direction), joined in all our conversations...had her for 2 years.
* threw up at the side of the road and called in sick...more than once...because she was hungover...lasted about 4 weeks
* totally missed the fact that my daughter had gone completely stiff, was wide eyed and had soiled herself...she was knitting, after all...and we found this out just because we checked in on her before we went to bed.
* child spent 2 hours with buckles the size of adult fists jammed behind her back
* walked away from child on narrow change table, almost tipped her completely out of her chair, left classroom where she was supposed to be supervising my daughter (with an E.A.) to make personal phone calls daily, burned child's mouth on hot beverage.
* one could make my daughter scream in pain when she was non-verbal...just by changing her briefs! I could go from the kitchen to my daughter's bedside to suction her faster than the fat slob who sat in the same room with her. This same piece of nameless expletives also told one of our dearest therapists that we were being cruel to our daughter by "stimulating her" and that we should just drug her senseless until she died.
* one got all her wedding invitations and bible classes planned during her shifts with my daughter
* bossy, bossy, bossy, yet knew nothing
This is just a sampling...there is actually more! Let it be your creed that if your child is in hospital or at home...make sure you supervise the nurse...god knows what will happen if you don't.