Trachs at the Zoo

Kind of a crazy weekend. Mabon was Saturday, and we really haven't done much specific holiday wise.

We intended to take Acorn to see Finding Nemo, but that didn't work out (note to self: research sensory friendly movie program). 

We had a nurse for Leaf all day, and K was going to keep Acorn Saturday night, so we ran some errands and packed him up and drove him to her place. We saw a movie, had dinner, went for a walk, and went to bed.

This morning, we got up and packed Leaf up to go to our first trach families outing - the zoo. Acorn and K met us there. We all had a great time - Acorn rode on the lap of one of the trached adults from the boards on her motorized wheelchair/scooter, and he thought it was the best thing ever.

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?

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.

 

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

Communication is Key

It's getting to be IEP (Individualized Education Plan) season around here again. I probably won't be posting all that much up front about it - this time around we have an advocate because of all the problems there have been in implementing Acorn's plan this past school year (which have spilled over into the summer session too). And Leaf's IEP is really only marginally better, though the constraints on Early Intervention suggest to me that there isn't as much room for improvement there.

One of our key concerns for both children, given their medical history, is communication.

Acorn says less than a dozen words - and many of those, you have to know him to understand.

We sign at home. Not fluent ASL, but something akin to SEE (signed exact English) - we sign the words we know while we're saying them. I counted last week - Acorn uses about 4 dozen signs consistently, another 3 dozen or so inconsistently (or they're newly demonstrated). Our guess is that he actually understands several hundred.

It's not hard to imagine that Leaf too will be fairly adept at signing, since we already sign with her and around her and expose her to it all the time.

Our school district has expressed concerns about this, because in the view of those we've worked with thus far, sign language of any sort is "non-functional" because other people can't understand it unless they know it. They would rather Acorn use a communication device - an electronic device that says things when you press buttons (or, as many of the newer ones are, an electronic touch pad with configurable screens where touching the images makes it say things).

They've supposedly used the low tech version of this -  PECS (Picture Exchange Communication Symbols) cards - in the classroom, but have only documented getting him to use one card thus far.

We really don't much care either way - we suspect that Acorn and Leaf will find their own mix of using any or all of the above, along with verbal speech, depending on the situation at hand, until such time as they're fluent enough in English to make it their primary (but maybe not only) communication mode.

This week we had a private evaluation for a communication device; the school is supposed to be starting their evaluation (finally) this week. I'm not sure what either evaluation will recommend (though I've heard that the school's will likely recommend one specific piece of equipment because that's who they're contracted with). But among the verbal suggestions from our evaluation last week was that we needed to work with Acorn on getting the idea that he can tell us what he wants by pressing buttons or pointing at pictures. And another was to use the same sorts of pictures to build him a schedule that he can look at and point to, in the vein of "do this next."

So...we've been playing with our own equipment and some free and low-cost communication apps for Android. I'm making our own set of PECS cards. I've spent a lot of time looking at how others use things like PECS with non-verbal children. There are foods and holidays and articles of clothing, toys and feelings and medical cards too - just about anything you can think of.

In a lot of cases, specific sets of cards are used in specific circumstances to help the child work through what they need to do. For example, a bedtime set might include taking a bath, putting on pajamas, brushing teeth, combing hair, washing face, going to the bathroom, saying prayers, and sleep. We saw one set of 4, with a specific type of communication device, that sang "Itsy Bitsy Spider" one line at a time as you pushed the buttons.

And that got me to thinking (yes, I do get all the way back around to being a Pagan parent here)....what sorts of cards would we have for a ritual? or for going to a festival? Could we do chants this way? Prayers? How would we describe what we're doing in a two inch by two inch square?

"Forcing" religion on kids?

A lot of times, the statement is made in Pagan circles that parents are not teaching their children their faith because they don't want to force their child to believe something....that they felt like religion was forced on them in their childhoods, and they don't want that for their children.

I find myself thinking that this is a false dichotomy.

Many monotheist "our way is the only way" faiths teach from that perspective....and a lot of us who came from a faith like that, from families that insisted on doing things their way, probably remember all the questions in our heads, the things that didn't sit right, the things that were just nonsensical to us. And if you were a kid like me, you remember the way you learned that some questions are just not meant to be asked....the audacity to ask things that were "inappropriate" was met with everything from shame and ridicule (in my case) to outright violence (in cases I know of).

Change is seen as bad for many of these folks - seriously, I remember the drama when the head organization of the church of my childhood produced a "new" hymnal.  20 years later, there was still a division between churches using the "old" hymnals and the "new" ones....and there probably still is to this day.

Pagan faiths are different. Categorically, qualitatively different. Worlds apart.

We're not tied to one specific way of worship, to the same songs or motions or actions every week. If a particular God or Goddess isn't really our cup of tea, we don't worship/interact/work with them much, if at all. There are few things that are "my way or the highway" sorts of deals, even within a specific tradition or group - and even in the most well organized groups, someone who says, "we can only do X for this holiday" (or God or ritual or whatever) is likely to find themselves either thrown out of the group, or with much of the existing group leaving for greener pastures.

While I suppose it's possible for us to try to shove a very specific Pagan worldview down our children's throats, I have yet to meet a Pagan who'd actually do it the way that most monotheist families seem to do - the polytheist/pantheist/panentheist/henotheist/archetypal sorts of relationships we have with Deity seem to, by their very nature, preclude that behavior.

That difference alone means that even teaching our children our own personal take on religion won't make them feel that our way is the only way, and that not doing it our way makes them a bad person. There is much less focus on fitting in with the group and following group-think as the way to get ahead. There's no shame in moving to a different faith, or even a different "congretation" within the same faith.

Because, when you get right down to it, you can't force a child believe anything - and I think those of us who came from a more forced background know this at heart, because so many of us don't believe those things we were taught. You can encourage, you can teach your way, you can bribe or threaten or cajole, but you can't reach into their little brains and flip the switches. They figure that out for themselves, and then remember how we as parents approached it, and that colors their views as they grow.

So....share with your children the things that bring you joy and peace. Show them your daily and weekly and monthly practice. Let them know that there are other options out there, and explore when they're ready to do so. And worry less about being like your parents were, because you've already stepped outside of the worldview that allowed that behavior in the first place.

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?

The intersection of Pagan kids and the mainstream world

We're generally picky about the movies we get for Acorn, but he has a lot of adults in his life besides us who buy things for him. Somewhere in the last couple of years, he received a copy of Here Comes Peter Cottontail (affiliate link), the Rankin and Bass stop-motion tale of how Peter became the chief Easter bunny after screwing it up the first time.  I am sure that before this DVD, I had never seen this movie - I'd have remembered this (it's not my favorite movie of theirs; the story really is kind of obnoxious. Plus it gives the impression that the movie  would probably be better if one was on drugs, much like Willy Wonka and the Chocolate Factory - the Gene Wilder version - which was released the same year.)

We've watched this movie dozens of times, but this morning I was struck by something:

I wonder what Acorn really thinks of this movie. Will he one day ask us why we don't celebrate Easter? Will it bother him that our Easter isn't like what the movie shows? Or that his friends celebrate different holidays? I so often wonder what is going on inside his head these days, but it'll be challenging in a different way to figure out how to answer those sorts of questions.