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?
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