I am at a loss today.
I learned that yet another trach mom I know has to face an unbearable truth: her child died.
Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.
Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.
Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).
And these kids are fragile, and you should have expected that sooner or later, they'd die.
Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.
But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.
And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?
I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.
I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."
Showing posts with label nursing. Show all posts
Showing posts with label nursing. Show all posts
Monday, October 5, 2015
Friday, August 16, 2013
The Chaos of Nursing
Can I just tell you how challenging it is to have nurses here?
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?
We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.
I mean...it's really really really nice to have a Pagan nurse.
Really nice. A relief.
For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.
And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.
Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.
Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.
Sigh.
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?
We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.
I mean...it's really really really nice to have a Pagan nurse.
Really nice. A relief.
For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.
And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.
Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.
Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.
Sigh.
Wednesday, January 30, 2013
More organizing for the trach parent
Around here, we've found that checklists and signs are often overlooked. But with the specter of more new nurses on the horizon, we've started (after nearly 4 years of having a trached child) to document and write it all down, so there are no excuses when it's not done correctly.
First we had a sign on the wall when we had 7 different nurses covering night shifts - the important bit was really #7, where it talks about how to pack the suction bag.
When I recently cleaned out the suction bag, I found over 2 dozen gloves, used suction catheters, and more that just didn't belong there, which is how I got on this rampage to begin with.
But now it's moved on to attempts to document trach care instructions and house rules and how to feed her (because our brand new dayshift nurse this week was struggling with "feed her some baby food from this shelf in the fridge. If you don't get to 250 calories, figure out how much formula she needs to get there. She will likely drink it from a cup, but if not, use the g-tube."
Sigh.
My other big beef lately is not having what we need in our diaper bag/go bag, so we're documenting it via pictures. I put them in a power point with detailed lists of what needs to be where.
Everything that goes in the backpack:
Wipes bag for diaper changes:
Bag of feeding tube supplies:
Bag of other medical supplies (would you believe I found an entire package of 100 cotton swabs in here?)
Our emergency box (most people use a bag; we use a clear plastic box for ease of finding things):
I'm not sure this will help as much as I'm hoping, but it'll sure make training new nurses easier to have everything written down.
First we had a sign on the wall when we had 7 different nurses covering night shifts - the important bit was really #7, where it talks about how to pack the suction bag.
When I recently cleaned out the suction bag, I found over 2 dozen gloves, used suction catheters, and more that just didn't belong there, which is how I got on this rampage to begin with.
But now it's moved on to attempts to document trach care instructions and house rules and how to feed her (because our brand new dayshift nurse this week was struggling with "feed her some baby food from this shelf in the fridge. If you don't get to 250 calories, figure out how much formula she needs to get there. She will likely drink it from a cup, but if not, use the g-tube."
Sigh.
My other big beef lately is not having what we need in our diaper bag/go bag, so we're documenting it via pictures. I put them in a power point with detailed lists of what needs to be where.
Everything that goes in the backpack:
Wipes bag for diaper changes:
Bag of feeding tube supplies:
Bag of other medical supplies (would you believe I found an entire package of 100 cotton swabs in here?)
Our emergency box (most people use a bag; we use a clear plastic box for ease of finding things):
I'm not sure this will help as much as I'm hoping, but it'll sure make training new nurses easier to have everything written down.
Tuesday, December 18, 2012
The Mixed Blessing of Nursing
Today I find myself thinking of Nurse Phyllis - one of our best and worst nurses ever, who passed away last December.
In the months before Acorn was decannulated, we all knew she was sick - the hacking cough was unmistakeably Bad News. Clearly not a respiratory illness, even someone without a medical background could tell there was something wrong...and Phyllis had been a nurse for a long time. Acorn was decannulated in August, and we heard in September or October that she was not doing well - the lung cancer we all suspected had metastasized, and was in her brain. About the time we moved Leaf to the other hospital (which happened late at night on the 23rd of December), we heard that Phyllis was gone. She passed peacefully in her sleep, surrounded by family, which was probably about the best anyone in her position could have hoped for.
Off and on I referred to Phyllis as Nurse Crankypants - and she was. Her personality was best described as abrasive. She was overly strict about everything, from how things were cleaned to where people left things and how people fed Acorn. She was extremely upset that we let Acorn play on the floor in the therapy waiting room because who knew what kinds of germs he'd get there? She made no bones about who she liked and who she didn't - you could depend on her to provide an unsolicited assessment of every doctor and therapist we saw.
And yet, for all that....Phyllis was an excellent nurse. An LPN who had first worked in the NICU, she knew complicated kids like no one's business. She knew death too - one of her own children had died in a car accident in his early teens - and she was adamant that it was not happening to anyone on her watch. Her assessment skills were top notch. And I know that I said more than once that if something was to go pear shaped, she was the nurse I hoped was on duty, because even more than Acorn's primary (who, I might add, is also Leaf's primary), Phyllis was the one person I trusted beyond anyone else to handle an emergency, without any questions, and without any missteps.
Beyond that, Acorn loved her. It was not an easy relationship in the beginning, but she was tough in a way that he really responded to. When she first started here, many of our other nurses were sure that we'd hate her, that she'd be too hard on Acorn, that she wouldn't get him...but more than many others, she saw what he was capable of, not just what he let on.
What made me think of her today was Acorn's appointment with his PMR doctor (which was supposed to be yesterday, but the doctor cancelled, and then should have been today, but Acorn is sick, so now it's the day after Christmas). Our PMR appointments are usually on Mondays, and Monday was one of Phyllis' regular days, so she ended up going to almost all of them with us. She gushed in the car on the way home after that first appointment about how this particular doctor handled Acorn...and she didn't gush about anyone or anything. I was pretty pleased with this doctor as well, but it was nice to have her backing me up on that front - it meant it wasn't just my feeling of, "finally, someone who sees the problems I see and wants to do something about them," but that this doctor really is a special kind of guy.
I don't know how Phyllis and Leaf would have gotten along - Leaf is sensitive in ways Acorn never was, and probably never will be. Still, I think they would have figured something out.
I never thought I'd say this when we first met her, but Phyllis, you're greatly missed.
In the months before Acorn was decannulated, we all knew she was sick - the hacking cough was unmistakeably Bad News. Clearly not a respiratory illness, even someone without a medical background could tell there was something wrong...and Phyllis had been a nurse for a long time. Acorn was decannulated in August, and we heard in September or October that she was not doing well - the lung cancer we all suspected had metastasized, and was in her brain. About the time we moved Leaf to the other hospital (which happened late at night on the 23rd of December), we heard that Phyllis was gone. She passed peacefully in her sleep, surrounded by family, which was probably about the best anyone in her position could have hoped for.
Off and on I referred to Phyllis as Nurse Crankypants - and she was. Her personality was best described as abrasive. She was overly strict about everything, from how things were cleaned to where people left things and how people fed Acorn. She was extremely upset that we let Acorn play on the floor in the therapy waiting room because who knew what kinds of germs he'd get there? She made no bones about who she liked and who she didn't - you could depend on her to provide an unsolicited assessment of every doctor and therapist we saw.
And yet, for all that....Phyllis was an excellent nurse. An LPN who had first worked in the NICU, she knew complicated kids like no one's business. She knew death too - one of her own children had died in a car accident in his early teens - and she was adamant that it was not happening to anyone on her watch. Her assessment skills were top notch. And I know that I said more than once that if something was to go pear shaped, she was the nurse I hoped was on duty, because even more than Acorn's primary (who, I might add, is also Leaf's primary), Phyllis was the one person I trusted beyond anyone else to handle an emergency, without any questions, and without any missteps.
Beyond that, Acorn loved her. It was not an easy relationship in the beginning, but she was tough in a way that he really responded to. When she first started here, many of our other nurses were sure that we'd hate her, that she'd be too hard on Acorn, that she wouldn't get him...but more than many others, she saw what he was capable of, not just what he let on.
What made me think of her today was Acorn's appointment with his PMR doctor (which was supposed to be yesterday, but the doctor cancelled, and then should have been today, but Acorn is sick, so now it's the day after Christmas). Our PMR appointments are usually on Mondays, and Monday was one of Phyllis' regular days, so she ended up going to almost all of them with us. She gushed in the car on the way home after that first appointment about how this particular doctor handled Acorn...and she didn't gush about anyone or anything. I was pretty pleased with this doctor as well, but it was nice to have her backing me up on that front - it meant it wasn't just my feeling of, "finally, someone who sees the problems I see and wants to do something about them," but that this doctor really is a special kind of guy.
I don't know how Phyllis and Leaf would have gotten along - Leaf is sensitive in ways Acorn never was, and probably never will be. Still, I think they would have figured something out.
I never thought I'd say this when we first met her, but Phyllis, you're greatly missed.
Wednesday, August 29, 2012
Busy busy busy
It has been a rough month here at Chez Acorn. Everyone's been sick, and either passing the germs back and forth, or not actually getting over the illnesses. Between Acorn and Leaf, there have been 7 pediatrician's visits, 1 vent clinic visit, 1 cardiology visit, 1 ENT visit, 1 referral to a new pulmonologist (which is scheduled for November, but the pediatrician wants to happen sooner), 3 rounds of antibiotics, 1 new inhaler, 3 rounds of oral steroids, 2 steroid shots, and a whole box of albuterol.
And that's not counting the meds & appointment I got for getting the same sinus infection.
On top of that, Acorn has had 2 different evaulations for assistive technology/alternative & augmentative communication (AAC) devices. I am meeting with his teacher later this week; she's hoping to move up the timeline that would get him a device sometime in October. That's not to say that all is hunky-dory with the school; there's still the issue of how they're communicating in the meanwhile, whether he'll use their device, the ignoring our request for a meeting to review the kids' IEPs, and their inability to get the bus schedule right.
We got 2 new nurses, and one has already quit. The rumors about why are pretty funny, but since I'm not supposed to actually know why she doesn't want to work at our house, I won't share here.
We didn't make it to Pagan Pride Day. I'm somewhat bummed by that, but I know that staying home and keeping our snot to ourselves was the best option. I'm hoping to get out to more events next year, and to start talking about travelling a bit more, since we expect Leaf will no longer be sporting a ventilator at some point. I haven't put in any classes for Convocation, and since the deadline is Friday night, I'm guessing I won't actually be putting in anything. I'm already behind on writing this month, and it's looking like I won't catch up in the next few days.
There *are* some fun things in the works though - I'm planning a couple outings for local trach families, trying again for a Pagan playdate this month, moving most of my ebooks off my own website and into amazon and smashwords for my own sanity, and working on a couple of childrens' books. Leaf is as cute as ever and growing by leaps and bounds, we're getting a vitamix to blenderize part of her feedings (and maybe some of Acorn's too), and we've all spent a lot of time out on the deck, playing in Acorn's sand and water table, so it's all good.
We just keep putting one foot in front of the other, and hope that next month is a little less intense (though with Acorn going back to school starting Wednesday and IEPs and appointments, who knows how it will all play out?
And that's not counting the meds & appointment I got for getting the same sinus infection.
On top of that, Acorn has had 2 different evaulations for assistive technology/alternative & augmentative communication (AAC) devices. I am meeting with his teacher later this week; she's hoping to move up the timeline that would get him a device sometime in October. That's not to say that all is hunky-dory with the school; there's still the issue of how they're communicating in the meanwhile, whether he'll use their device, the ignoring our request for a meeting to review the kids' IEPs, and their inability to get the bus schedule right.
We got 2 new nurses, and one has already quit. The rumors about why are pretty funny, but since I'm not supposed to actually know why she doesn't want to work at our house, I won't share here.
We didn't make it to Pagan Pride Day. I'm somewhat bummed by that, but I know that staying home and keeping our snot to ourselves was the best option. I'm hoping to get out to more events next year, and to start talking about travelling a bit more, since we expect Leaf will no longer be sporting a ventilator at some point. I haven't put in any classes for Convocation, and since the deadline is Friday night, I'm guessing I won't actually be putting in anything. I'm already behind on writing this month, and it's looking like I won't catch up in the next few days.
There *are* some fun things in the works though - I'm planning a couple outings for local trach families, trying again for a Pagan playdate this month, moving most of my ebooks off my own website and into amazon and smashwords for my own sanity, and working on a couple of childrens' books. Leaf is as cute as ever and growing by leaps and bounds, we're getting a vitamix to blenderize part of her feedings (and maybe some of Acorn's too), and we've all spent a lot of time out on the deck, playing in Acorn's sand and water table, so it's all good.
We just keep putting one foot in front of the other, and hope that next month is a little less intense (though with Acorn going back to school starting Wednesday and IEPs and appointments, who knows how it will all play out?
Friday, August 10, 2012
Complex medical needs final exam
In order to survive parenthood with a complicated child, you're gonna need some special skills. This final exam is based on real experiences, not all of them mine.
It is likely that without experience you will fail this test, but that's ok - this special needs parenting gig comes with on the job training (by which I mean sink or swim). The smiles are worth it though.
It is likely that without experience you will fail this test, but that's ok - this special needs parenting gig comes with on the job training (by which I mean sink or swim). The smiles are worth it though.
Question 1: child's pulse ox reads 30 points higher than normal, with no other symptoms. Do you:A. Try re-adjusting pulse ox
B. Administer some sort of pain reliever
C. Call pediatrician
D. Increase oxygen
E. Go to ER
Question 2: your nurse for the night was supposed to arrive 15 minutes ago and hasn't called off yet. What do you do?
A. Call agency to complain (again)
B. Start praying because you haven't had a nurse any of the last 4 nights and you desperately need sleep
C. Know not to bother checking the schedule because Nurse X is always late (but has never missed a shift) so it's probably just her night
Question 3: your child has "loose stools" as they say due to being on their 2nd antibiotic in 10 days for an infection that won't clear. His diaper comes off while still inside his onesie, resulted in him being covered in poop from toes to armpits. Do you:
A. Pass out from the stench
B. Strip naked & carry child into the shower, figuring you can keep the water out of his trach if you're careful
C. Leave a tub full of toys for the nurse to clean - she needs something to keep her awake anyway
D. Change vent circuit rather than trying to clean corrugated tubing
Question 3: your child is sick. Do you:
A. Put on a movie to help them feel better
B. Refuse to put on a movie because they will have a meltdown even if you put in the movie they ask for
Question 4: it is IEP time. What percentage of the things agreed to (on tape) will actually be implemented?
A. 100%
B. 75%
C. 50%
D. Hahahahahahaha! OMG you fell for that stuff they said?
E. Depends on how much you're paying your advocate
Question 5: your child is sick. How long will it take you to get a doctor to see them?
A. Within a day
B. Sometime this week
C. They're now (August) scheduling appointments for January
D. Depends on how crowded the ER is
Question 6: you catch your night nurse sleeping. Do you:
A. Fire her on the spot
B. Tell her not to let it happen again and then set your alarm so you can check
C. Tell agency to warn her
D. Nothing, because you're already short a night nurse and how would you manage with one less?
Question 7: your pediatrician tells you to go to the ER. What happens?
A. Chest x-ray and they send you home
B. Admitted to PICU
Answers:
1. A, B, or D
2. Any answer is acceptable
3. You're screwed either way. Good luck.
4. I'm going with E
5. Depends on the doctor, but it's probably not today.
6. Depends on how many other times you've caught this nurse sleeping.
7. Whichever you think they should do, the hospital will do the opposite
B. Administer some sort of pain reliever
C. Call pediatrician
D. Increase oxygen
E. Go to ER
Question 2: your nurse for the night was supposed to arrive 15 minutes ago and hasn't called off yet. What do you do?
A. Call agency to complain (again)
B. Start praying because you haven't had a nurse any of the last 4 nights and you desperately need sleep
C. Know not to bother checking the schedule because Nurse X is always late (but has never missed a shift) so it's probably just her night
Question 3: your child has "loose stools" as they say due to being on their 2nd antibiotic in 10 days for an infection that won't clear. His diaper comes off while still inside his onesie, resulted in him being covered in poop from toes to armpits. Do you:
A. Pass out from the stench
B. Strip naked & carry child into the shower, figuring you can keep the water out of his trach if you're careful
C. Leave a tub full of toys for the nurse to clean - she needs something to keep her awake anyway
D. Change vent circuit rather than trying to clean corrugated tubing
Question 3: your child is sick. Do you:
A. Put on a movie to help them feel better
B. Refuse to put on a movie because they will have a meltdown even if you put in the movie they ask for
Question 4: it is IEP time. What percentage of the things agreed to (on tape) will actually be implemented?
A. 100%
B. 75%
C. 50%
D. Hahahahahahaha! OMG you fell for that stuff they said?
E. Depends on how much you're paying your advocate
Question 5: your child is sick. How long will it take you to get a doctor to see them?
A. Within a day
B. Sometime this week
C. They're now (August) scheduling appointments for January
D. Depends on how crowded the ER is
Question 6: you catch your night nurse sleeping. Do you:
A. Fire her on the spot
B. Tell her not to let it happen again and then set your alarm so you can check
C. Tell agency to warn her
D. Nothing, because you're already short a night nurse and how would you manage with one less?
Question 7: your pediatrician tells you to go to the ER. What happens?
A. Chest x-ray and they send you home
B. Admitted to PICU
Answers:
1. A, B, or D
2. Any answer is acceptable
3. You're screwed either way. Good luck.
4. I'm going with E
5. Depends on the doctor, but it's probably not today.
6. Depends on how many other times you've caught this nurse sleeping.
7. Whichever you think they should do, the hospital will do the opposite
Tuesday, July 31, 2012
What it's Really Like Down Here in the Trenches
Support groups are funny things. Parents of kids with a specific condition use them to talk about what's going on in their kids' lives - the good, the bad, and the ugly. Several times in recent months, I've seen professionals on the other side of the same condition (ie, the doctors, nurses, and therapists that work with our kids) on such support groups get upset by the things parents say about other professionals that we work with. They often make judgements and assumptions about things like quality of life for our families and our kids, based only on the small sample they see on these groups.
I'd like to think most of them actually know that there are good and bad people in every field. I'd like to think most of them realize that hospitals and the real world are two different beasts - that their experiences in the hospital or clinic are nothing like our experiences at home. But clearly, I'd be expecting too much, based on some of the things I've read lately.
To that end, I want to share this list of things for those medical people who work with families with kids with trachs, about how different it really is out here vs the way they teach it in the hospitals. I've asked several of the groups I'm on to help build this list, and I'm so grateful for the help of other trach moms to put this together.
1. Hospitals teach that you should always have 2 people to do a trach tie change or to change a trach.
So....if my kid pukes and I'm home alone with her (or a nurse is home alone with her), and her ties are soaked, we should just leave her soaking in puke until someone else gets home? What if she plugs her trach - are we supposed to stand by and watch her turn blue, hoping that someone comes home soon?
It'd be far better to teach people how to do it by themselves, while teaching how much easier and safer it is with two people.
2. Hospitals like to threaten parents when it comes to nursing. They say "you have to have nursing or you can't go home" or even "you have to have 24/7 nursing or we'll call CPS" (or whatever your local children's protection/welfare agency is).
Once you're home, nursing agencies don't always fill every shift. If you fire someone for any reason - whether it's that you don't like them, or that they nearly killed your child, you're likely going to have that shift open for some amount of time.
Talking to people around the country, it seems like most medicaid plans allow for 84 hours of nursing a week (12 hours a day, spread over the week). We're lucky - our insurance provides 126 hours a week. But that's still not actually enough to be 24/7, so it's not like getting approved for what the doctors want is realistic, much less filling all those shifts.
3. Another thing on nursing: hospitals have a process for interviewing and hiring nurses.
Anyone who works with a group of people knows that even with that process, some people are better at their jobs than others, no matter what the field. We get good nurses and we get terrible nurses - I don't know what the ratio is at hospitals when they interview, but out here in the real world it seems to run about 50/50. We have people who don't show up for shifts, people who show up late...and at any other job, those things would get them fired, but when I fire a nurse at my house, the agency moves them to another case.
4. Sterile technique.
To be fair, only one of our 3 hospitals teaches it this way, but there's no way to do sterile technique in the middle of a playground.
Sterile technique requires a new catheter for every suction...so if you have a kid who gets suctioned once an hour, which is not uncommon (24 catheters a day x 30 days in a month = 720 catheters) but only get 150 catheters a month (which we do), you're screwed. And a lot of insurance companies are not as generous as ours when it comes to handing out catheters.
5. Hospitals teach that you must have someone awake with your child all the time.
Did you see that statement up there about how not all nursing shifts are filled? So...let's say you have 4 days with no nursing, and one of the adults works full time (assuming a 2 adult household with everyone trained in trach management)....how do you stay awake at night and work or take care of your child during the day? Or what if you're a single parent?
A nurse would never be asked to work that kind of shift with no breaks and no sleep, and yet parents do it all the time.
6. We're all told to never drive in a vehicle without someone sitting in the back seat with our child.
Right. See that about not filling every shift, and about how most people actually get less than half the hours in a week at most? How do you take your child to doctor or therapist appointments if you can't travel alone but don't have a nurse that day? How do you pick up your other children from school?
Not that every child is stable enough to drive that way, but it's a risk/benefit discussion that parents have to figure out for themselves.There are "safer" ways (driving on surface streets, driving short distances, keeping pulse ox on in a place where the parent can see it), but all in all, we have to live our lives.
7. Medical supply companies (most of them, at any rate) lie.
In a hospital, there is a seemingly endless supply of supplies - nurses use lots of everything, without fear of running out. Doctors tell you to do "x" without realizing that you're not going to have enough supples at home to do it that way.
At home, it's different. "Oh, your insurance only allows 1 pulse ox probe a year" is a good one - pulse ox probes are not billable, they're a part of having a working pulse oximeter....so they're required to provide them if your insurance is paying for the oximeter.
Or they say you can only have 10 trach ties a month, when it turns out that your insurance allows 40 and medicaid allows 30, and the doctor says to change them every day, or more often if needed. So...30 days in a month, with a kid who pukes daily and gets their ties covered in slime = at least 60 ties....if I'm told I can only have 10, what do I do?
8. Doctors don't have new nurses who walk in to the hospital who declare that they don't like the way the room is organized or the way the doctor wants the patient cared for, what medications the child is on, how the child is dressed, what tools the doctor uses in the OR, or any of those things. But I think all of us with home nursing have had nurses like that. We've had nurses uncomfortable with Acorn needing to be suctioned. We've had nurses get upset when kids vomit. We've had nurses refuse to suction in the car, because it's not a bed. Really.
There's plenty more...I've been sitting on this post for a while now, but having oriented several new nurses lately, it's come to the forefront again, and I really think more understanding of the differences between home and hospital is needed. Did I miss anything?
I'd like to think most of them actually know that there are good and bad people in every field. I'd like to think most of them realize that hospitals and the real world are two different beasts - that their experiences in the hospital or clinic are nothing like our experiences at home. But clearly, I'd be expecting too much, based on some of the things I've read lately.
To that end, I want to share this list of things for those medical people who work with families with kids with trachs, about how different it really is out here vs the way they teach it in the hospitals. I've asked several of the groups I'm on to help build this list, and I'm so grateful for the help of other trach moms to put this together.
1. Hospitals teach that you should always have 2 people to do a trach tie change or to change a trach.
So....if my kid pukes and I'm home alone with her (or a nurse is home alone with her), and her ties are soaked, we should just leave her soaking in puke until someone else gets home? What if she plugs her trach - are we supposed to stand by and watch her turn blue, hoping that someone comes home soon?
It'd be far better to teach people how to do it by themselves, while teaching how much easier and safer it is with two people.
2. Hospitals like to threaten parents when it comes to nursing. They say "you have to have nursing or you can't go home" or even "you have to have 24/7 nursing or we'll call CPS" (or whatever your local children's protection/welfare agency is).
Once you're home, nursing agencies don't always fill every shift. If you fire someone for any reason - whether it's that you don't like them, or that they nearly killed your child, you're likely going to have that shift open for some amount of time.
Talking to people around the country, it seems like most medicaid plans allow for 84 hours of nursing a week (12 hours a day, spread over the week). We're lucky - our insurance provides 126 hours a week. But that's still not actually enough to be 24/7, so it's not like getting approved for what the doctors want is realistic, much less filling all those shifts.
3. Another thing on nursing: hospitals have a process for interviewing and hiring nurses.
Anyone who works with a group of people knows that even with that process, some people are better at their jobs than others, no matter what the field. We get good nurses and we get terrible nurses - I don't know what the ratio is at hospitals when they interview, but out here in the real world it seems to run about 50/50. We have people who don't show up for shifts, people who show up late...and at any other job, those things would get them fired, but when I fire a nurse at my house, the agency moves them to another case.
4. Sterile technique.
To be fair, only one of our 3 hospitals teaches it this way, but there's no way to do sterile technique in the middle of a playground.
Sterile technique requires a new catheter for every suction...so if you have a kid who gets suctioned once an hour, which is not uncommon (24 catheters a day x 30 days in a month = 720 catheters) but only get 150 catheters a month (which we do), you're screwed. And a lot of insurance companies are not as generous as ours when it comes to handing out catheters.
5. Hospitals teach that you must have someone awake with your child all the time.
Did you see that statement up there about how not all nursing shifts are filled? So...let's say you have 4 days with no nursing, and one of the adults works full time (assuming a 2 adult household with everyone trained in trach management)....how do you stay awake at night and work or take care of your child during the day? Or what if you're a single parent?
A nurse would never be asked to work that kind of shift with no breaks and no sleep, and yet parents do it all the time.
6. We're all told to never drive in a vehicle without someone sitting in the back seat with our child.
Right. See that about not filling every shift, and about how most people actually get less than half the hours in a week at most? How do you take your child to doctor or therapist appointments if you can't travel alone but don't have a nurse that day? How do you pick up your other children from school?
Not that every child is stable enough to drive that way, but it's a risk/benefit discussion that parents have to figure out for themselves.There are "safer" ways (driving on surface streets, driving short distances, keeping pulse ox on in a place where the parent can see it), but all in all, we have to live our lives.
7. Medical supply companies (most of them, at any rate) lie.
In a hospital, there is a seemingly endless supply of supplies - nurses use lots of everything, without fear of running out. Doctors tell you to do "x" without realizing that you're not going to have enough supples at home to do it that way.
At home, it's different. "Oh, your insurance only allows 1 pulse ox probe a year" is a good one - pulse ox probes are not billable, they're a part of having a working pulse oximeter....so they're required to provide them if your insurance is paying for the oximeter.
Or they say you can only have 10 trach ties a month, when it turns out that your insurance allows 40 and medicaid allows 30, and the doctor says to change them every day, or more often if needed. So...30 days in a month, with a kid who pukes daily and gets their ties covered in slime = at least 60 ties....if I'm told I can only have 10, what do I do?
8. Doctors don't have new nurses who walk in to the hospital who declare that they don't like the way the room is organized or the way the doctor wants the patient cared for, what medications the child is on, how the child is dressed, what tools the doctor uses in the OR, or any of those things. But I think all of us with home nursing have had nurses like that. We've had nurses uncomfortable with Acorn needing to be suctioned. We've had nurses get upset when kids vomit. We've had nurses refuse to suction in the car, because it's not a bed. Really.
There's plenty more...I've been sitting on this post for a while now, but having oriented several new nurses lately, it's come to the forefront again, and I really think more understanding of the differences between home and hospital is needed. Did I miss anything?
Saturday, February 25, 2012
Changes again
It never stops, does it?
I'm making plans to go back to work by the end of March, likely 3 days a week. Acorn has been going to daycare 2 days a week for the last few weeks, and will be going 4 days a week starting this week. That extra day I'm home will be for Leaf's big appointments, and for getting other things done.
Our insurance issues appear to be resolved, which is a huge load off my shoulders, because it means some of Leaf's therapy needs will be covered, and we'll get our extra nursing hours back that we lost when we thought our insurance was toast.
We've already fired a nurse for gross incompetence. At least I no longer feel I have to try to work things out with people who just aren't going to work out. But largely, we've sort of fallen right back into the same pattern we've had for the last several years
I'm not sure how this will all play out, but I really feel like I need to get back into a regular group practice. I feel like I need to do a lot of things, and there's just not time for any of them, so we'll just have to figure it out.
I'm making plans to go back to work by the end of March, likely 3 days a week. Acorn has been going to daycare 2 days a week for the last few weeks, and will be going 4 days a week starting this week. That extra day I'm home will be for Leaf's big appointments, and for getting other things done.
Our insurance issues appear to be resolved, which is a huge load off my shoulders, because it means some of Leaf's therapy needs will be covered, and we'll get our extra nursing hours back that we lost when we thought our insurance was toast.
We've already fired a nurse for gross incompetence. At least I no longer feel I have to try to work things out with people who just aren't going to work out. But largely, we've sort of fallen right back into the same pattern we've had for the last several years
I'm not sure how this will all play out, but I really feel like I need to get back into a regular group practice. I feel like I need to do a lot of things, and there's just not time for any of them, so we'll just have to figure it out.
Monday, February 13, 2012
Now that we've been home a few days...
In the rush to schedule posts and keep them a bit spread out, I neglected to post a link to the news story we were interviewed for about Feeding Tube Awareness Week in yesterday's Detroit Free Press. I really like the article, and they got some great photos.
Leaf was released from the hospital last Wednesday. It's been a whirl-wind, and not much has gotten done, beyond orienting new (and old) nurses to Leaf and her quirks, getting our heads around her schedule, dealing with the jealousy common to 3 year old big brothers (especially when his favorite nurse has to put his sister first), and generally snuggling my kiddos.
We've had no nurse from 7 am Saturday through 11 pm Sunday. And it's been good in many ways, more relaxed, more a matter of us finding our way than of trying to balance our desires, the expectations of various nurses, and so on and so forth. Less interference.
But less sleep.
There are some issues with our insurance, so this week, if they're not resolved, I'll probably be talking with my employer about going back to work earlier than planned. My original argument for taking leave was that Leaf was not childcare friendly - not with oxygen and a feeding tube. Child care is now a moot point, with nursing on board. Acorn is already back in daycare 2 days a week for everyone's sanity, including his own. I'm not sure any of that is what I had in mind, but it is what it is.
But this break from work has been good for me in other ways. I've been writing. I've published a mini course, I'm part way through an energy work kit, I'm going to get my etsy shop back online, and there's a few more things in the works too.
Leaf was released from the hospital last Wednesday. It's been a whirl-wind, and not much has gotten done, beyond orienting new (and old) nurses to Leaf and her quirks, getting our heads around her schedule, dealing with the jealousy common to 3 year old big brothers (especially when his favorite nurse has to put his sister first), and generally snuggling my kiddos.
We've had no nurse from 7 am Saturday through 11 pm Sunday. And it's been good in many ways, more relaxed, more a matter of us finding our way than of trying to balance our desires, the expectations of various nurses, and so on and so forth. Less interference.
But less sleep.
There are some issues with our insurance, so this week, if they're not resolved, I'll probably be talking with my employer about going back to work earlier than planned. My original argument for taking leave was that Leaf was not childcare friendly - not with oxygen and a feeding tube. Child care is now a moot point, with nursing on board. Acorn is already back in daycare 2 days a week for everyone's sanity, including his own. I'm not sure any of that is what I had in mind, but it is what it is.
But this break from work has been good for me in other ways. I've been writing. I've published a mini course, I'm part way through an energy work kit, I'm going to get my etsy shop back online, and there's a few more things in the works too.
Wednesday, August 31, 2011
The End of An Era
Today is our last day of nursing (though our primary nurse has offered to sit with Acorn once in a while, and we've made arrangements with her to do so once a month so we can get out of the house). When Nurse J leaves at 7 am tomorrow, we're done for good.
It's rather bittersweet - yeah, I want them gone. I want my house back. But there are all these little details.... nebulizer treatments and one medication that we almost never give. Night time wakings. Child care arrangements. At home arrangements for when he's sick. Lots of little things that normal families do all the time.
The list is a little overwhelming, but it should be ok. There's no trach to suction. No g-tube to come out in the middle of the night. No need to turn the pulse ox on at all, really.
Thursday, Acorn starts daycare. By himself. When we did daycare earlier this year, it took a whole duffle bag to be prepared for all possibilities, plus a bag for his cloth diapers. Now we're looking at just packing him a kid-sized backpack, plus his bag of diapers.
And here we thought getting rid of the ventilator meant less stuff to carry.
Tuesday, August 9, 2011
thoughts on nursing
I've been trying to write a post on having nurses at home for months. Not that I don't appreciate them, but it's appreciation tempered with irritation.
Having nursing at home is like a cross between having a roommate and having a houseguest who overstays their welcome. There's no privacy - at least when you have a roommate, your roommate is usually as invested in privacy as you are.
We have 5 nurses in our house each week. Each of them has their own quirks. And their interactions with each other make most polyamorous relationships look sane. Think Jerry Springer material, and you'd be close.
We had a nurse who was marking the equipment with an ink pen, to see if others were cleaning the way she thought they should...except that the pen marks still won't come off. Another is afraid to write anything about the pen marks in the communication book, because she thinks someone else will go off on her and then call and get her fired.
Acorn's nebulizer parts and syringes have migrated from the shelf in his room to the bathroom. His trach care supplies have migrated from the closet to the dresser. He's developed a stack of blankets on the nightstand, when they're supposed to be in the closet...and even if I leave a blanket on him when he goes to bed, and put the others away, there's at least one new one on the night stand the next morning. I keep finding a stack of books over the vent in his room....which has a lever to close it if it's too cold. One nurse puts a new diaper cover on every other diaper...and we only own 7 of them, so he's usually out of covers at the end of her shift. Another refuses to use the prefolds - not that she can't, but she won't, and she won't have him sit on the potty either.
When it's good, it's good - no sitting up all night suctioning, no worrying something will go wrong and they won't know what to do. We have consistent people who show up for their shifts.
When it's bad, it's awful. We've never had someone show up who couldn't change a trach, but I know people who have. Our nurses have never eaten all our food, but I know a family who's had that happen too. I know people who've found their nurse sleeping through their child's vent and pulse ox alarming. In most cases, no nurse is better than a bad nurse.
This past week, one nurse decided that crying and stomping his feet because she didn't put in the video he wanted warranted a time out....in his high chair. That's right - my kid who is still in feeding therapy, even though we're g-tube free, is being punished by being put in the same place we're trying to make enjoyable. Oh, and no time limit on her time outs - if my 3-year-old took 10 minutes to calm down, that's how long he sat there.
Needless to say, we had a long talk.
One night nurse has decided to park in the driveway. Either behind one of our cars, or only half way up the driveway. So...if she gets to talking with the day nurse, we can't get out to go to work, and then she's cranky about being asked to move her car.
You know, I'm sure daycare will have its issues....but I'm so looking forward to having my house to myself and having things stay where I put them.
Having nursing at home is like a cross between having a roommate and having a houseguest who overstays their welcome. There's no privacy - at least when you have a roommate, your roommate is usually as invested in privacy as you are.
We have 5 nurses in our house each week. Each of them has their own quirks. And their interactions with each other make most polyamorous relationships look sane. Think Jerry Springer material, and you'd be close.
We had a nurse who was marking the equipment with an ink pen, to see if others were cleaning the way she thought they should...except that the pen marks still won't come off. Another is afraid to write anything about the pen marks in the communication book, because she thinks someone else will go off on her and then call and get her fired.
Acorn's nebulizer parts and syringes have migrated from the shelf in his room to the bathroom. His trach care supplies have migrated from the closet to the dresser. He's developed a stack of blankets on the nightstand, when they're supposed to be in the closet...and even if I leave a blanket on him when he goes to bed, and put the others away, there's at least one new one on the night stand the next morning. I keep finding a stack of books over the vent in his room....which has a lever to close it if it's too cold. One nurse puts a new diaper cover on every other diaper...and we only own 7 of them, so he's usually out of covers at the end of her shift. Another refuses to use the prefolds - not that she can't, but she won't, and she won't have him sit on the potty either.
When it's good, it's good - no sitting up all night suctioning, no worrying something will go wrong and they won't know what to do. We have consistent people who show up for their shifts.
When it's bad, it's awful. We've never had someone show up who couldn't change a trach, but I know people who have. Our nurses have never eaten all our food, but I know a family who's had that happen too. I know people who've found their nurse sleeping through their child's vent and pulse ox alarming. In most cases, no nurse is better than a bad nurse.
This past week, one nurse decided that crying and stomping his feet because she didn't put in the video he wanted warranted a time out....in his high chair. That's right - my kid who is still in feeding therapy, even though we're g-tube free, is being punished by being put in the same place we're trying to make enjoyable. Oh, and no time limit on her time outs - if my 3-year-old took 10 minutes to calm down, that's how long he sat there.
Needless to say, we had a long talk.
One night nurse has decided to park in the driveway. Either behind one of our cars, or only half way up the driveway. So...if she gets to talking with the day nurse, we can't get out to go to work, and then she's cranky about being asked to move her car.
You know, I'm sure daycare will have its issues....but I'm so looking forward to having my house to myself and having things stay where I put them.
Saturday, December 4, 2010
Saturday morning
Some days, morning comes far too early. Our Saturday nurse is out on medical leave, which means on Saturdays, one of us has to be up by 7 when the night nurse leaves for report...and then frequently, I head back to bed, and turn the baby monitor on.
This morning is no exception, except I couldn't sleep.
I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.
Acorn is not even 48 hours post surgery, which has brought its own issues.
At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.
But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.
Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.
No....none of that could possibly be making him restless. Not at all.
Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night. We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.
ahem.
Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?
This morning is no exception, except I couldn't sleep.
I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.
Acorn is not even 48 hours post surgery, which has brought its own issues.
At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.
But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.
Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.
No....none of that could possibly be making him restless. Not at all.
Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night. We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.
ahem.
Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?
Tuesday, August 3, 2010
Trusting your child's caregivers
Some days, being "normal" feels harder than the crazy special needs life we lead.
Today I put Acorn and our brand new nurse (she oriented with our primary nurse last week, today was her first actual day of work) on the bus, less than an hour after she arrived.
It's the first time we've ever left a new nurse with Acorn for any length of time on their first day.
If he were a kid without medical complications, he'd've been in a daycare center. We'd've interviewed them, visited, investigated....and left him with them, probably without another thought.
It's hard to trust caregivers though, when you've got a kid like Acorn. It's been a year since the last time he quit breathing and turned blue....but if it happens, will the person with him know what to do? What if his trach comes out? His g-tube button? What if he vomits and gets it in his trach?
It's not like we have that many people we can trust with his care either - we've never left him with grandparents or anyone else in the family; they are unwilling to learn his care. We have, at this point, 3 day shift nurses and 3 night shift nurses - and this new day shift nurse is still up for discussion. We have one family friend who's watched Acorn a few times.
One of these days, the trach won't be an issue.
But leaving him at preschool? Putting him on the school bus all by himself?
I'm thinking I'll never get the hang of that.
Today I put Acorn and our brand new nurse (she oriented with our primary nurse last week, today was her first actual day of work) on the bus, less than an hour after she arrived.
It's the first time we've ever left a new nurse with Acorn for any length of time on their first day.
If he were a kid without medical complications, he'd've been in a daycare center. We'd've interviewed them, visited, investigated....and left him with them, probably without another thought.
It's hard to trust caregivers though, when you've got a kid like Acorn. It's been a year since the last time he quit breathing and turned blue....but if it happens, will the person with him know what to do? What if his trach comes out? His g-tube button? What if he vomits and gets it in his trach?
It's not like we have that many people we can trust with his care either - we've never left him with grandparents or anyone else in the family; they are unwilling to learn his care. We have, at this point, 3 day shift nurses and 3 night shift nurses - and this new day shift nurse is still up for discussion. We have one family friend who's watched Acorn a few times.
One of these days, the trach won't be an issue.
But leaving him at preschool? Putting him on the school bus all by himself?
I'm thinking I'll never get the hang of that.
Tuesday, March 23, 2010
Oh, now I see...
We recently got a new night nurse added to our schedule. She's competent enough, but there's something about her I haven't liked since her first night....and last night I finally figured out what it was.
Most nurses come into our house and say, "how is Acorn?" We usually give some brief answer to that, and they respond with, "Any problems or changes?"
This nurse comes in, and her response to, "oh, he's fine, he had a good day" is something like last night's response: "Did he have a BM today?"
I'm told she's a good nurse, that she's really a great person.
But seriously, her biggest concern is whether he pooped today? Frankly, if he hadn't (because we typically get 2-3 a day), I wouldn't say he's fine - I'd say, "well, we think he's constipated," or, "you know, we were just talking, and none of us has changed a poopy diaper today, so I think we should be watching that closely."
When she saw me changing his speaking valve for a trach nose after I carried him up last night, she asked, "So how long did he wear that today?" Acorn's been wearing it all day for weeks now - actually, for about 2 months. So...if he hadn't worn it all day, I wouldn't have said he was fine, I'd've said, "Oh, he was extra mucousy today - maybe catching a cold - and the valve just was too much, so be prepared to sit there and suction all night."
I dunno. I understand how nursing shift hand-offs work in the hospital, but even those are more personal than this.
Most nurses come into our house and say, "how is Acorn?" We usually give some brief answer to that, and they respond with, "Any problems or changes?"
This nurse comes in, and her response to, "oh, he's fine, he had a good day" is something like last night's response: "Did he have a BM today?"
I'm told she's a good nurse, that she's really a great person.
But seriously, her biggest concern is whether he pooped today? Frankly, if he hadn't (because we typically get 2-3 a day), I wouldn't say he's fine - I'd say, "well, we think he's constipated," or, "you know, we were just talking, and none of us has changed a poopy diaper today, so I think we should be watching that closely."
When she saw me changing his speaking valve for a trach nose after I carried him up last night, she asked, "So how long did he wear that today?" Acorn's been wearing it all day for weeks now - actually, for about 2 months. So...if he hadn't worn it all day, I wouldn't have said he was fine, I'd've said, "Oh, he was extra mucousy today - maybe catching a cold - and the valve just was too much, so be prepared to sit there and suction all night."
I dunno. I understand how nursing shift hand-offs work in the hospital, but even those are more personal than this.
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