Monday, August 15, 2016

And on and on and on and on and...

So far this year, although cardiology discharged us, we've had the saga of Acorn randomly passing out (apparently it's not epilepsy, the reigning theory is vaso-vagal weirdness), Leaf's hives from hell that lasted a month the first time, and then came back 3 or 4 more times for a few days at a time, Hand Foot and Mouth disease (resulting in a febrile seizure for Leaf), and Leaf falling down the stairs and cutting open her cheek bone.

That last one is killing me - it's not healing nicely, even after 6 hours in the ER to get it stitched up (they wanted to be sure her skull and brain were intact, and there were 3 pediatric trauma calls after we got there, and at least 1 just 20 minutes before us). In fact, the cut is still wide and gappy a week later, after it took us 2 days to get the scabs melted enough to get the stitches out. The pediatrician suggested taking her back to the ER so they could drug her (again) to get the sutures out, but we were not real keen on yet another visit.

As if 2 ER visits in one weekend wasn't enough trauma for all of us. That's actually a new record.....shortest time between ER visits.  Even RSV with 2 complex kids couldn't manage that.

People keep saying it's not a big deal, but the truth is, it's a huge deal. Of all her scars, this is one she can't easily cover. This is one that will be in every photograph for the foreseeable future. "If it bothers her" seems like a senseless thing to say, because of all the scars, this is the one people are going to ask about.

People comment on how beautiful she is. And I can see that coming to a screeching halt when she turns and they see this gash. Being cute has gotten my kids a lot further than they would otherwise get, because people respond to cute, and want to be near and help cute.

And even if we did take her to a plastic surgeon.....that's a whole nother round of trauma. More doctors, more surgery, more hospitals....

This never-ending cycle is exhausting.

Monday, May 2, 2016

Mom in the Middle

I know I said I was going to write more. Follow-through has not been my strong point lately.

There's a post over on The Mighty about being the mom in the middle - about not quite fitting into various parenting categories.

I find, these days, that there are so many middles to be in the middle of. 

I'm no longer a 'medically fragile' mom...but we're still more complicated, medically, than most kids. 

I'm now officially an 'autism' mom....but actually don't identify with the perspectives of many vocal autism parents. 

I'm a cerebral palsy mom....but my kids walk and eat and run and climb. 

I've been a heart mom...but everyone was discharged from cardiology in February, for good, with totally normal hearts.

I sometimes think that we're too busy drawing lines....and forgetting to treat each other as moms, each of whom has challenges - some big, some little, but all important....

And I wish that we'd all think about that more often. Every mom is important. Every child is important. One's challenges may be bigger than another....but a small challenge can need just as much support from our communities as a big one, depending on the circumstances.

Monday, October 5, 2015

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."

Tuesday, August 18, 2015

Still here

We're still here.

It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.

Leaf's g-tube surgery went well....but then healing was hard to come by. She rejected all the sutures, and the surgical site broke open from the new wound.  Nearly two months of wound care were required to get it healed - and I suppose it could look worse, but it could look better, too.

Preschool is going well. They were nervous, but she's mostly been good for them. She has a 1:1 aide working on going potty and as a general extra set of eyes, but she's not taking off running all the time because they're holding her interest. Other kids want to be her friends.

Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.

We've struggled with what to do with the kids on weekends. I keep thinking that I should do something Pagan-like with them, but the idea of actually planning anything gets pretty overwhelming, and then I think, well if I'm planning it for them, why not plan something for more kids, and then it spirals out of control.

As for me?  I published a book (finally!).  That's been quite a whirl-wind of emotion and chaos. But it also feels good to be DONE with it. What's next? Dunno, exactly, though I've been taking submissions for a children's prayer book anthology, and my goal this year has been to realize that I'm working on the universe's timeline, not my own....and that things happen when they happen.

We ran a donation drive for school supplies for foster kids on my reservation. It was a huge success, and we're hoping to do even more next year. I want to do more community stuff.

I need more sleep. I am tired all the time, and I hurt all the time - and that's not new, but it's getting worse, so it's probably time to do something about it. I finished off my Reiki Master/Teacher certification, wrote some classes on other topics....and have done nothing with them.

I really think I want to do something other than being an engineer, but being an engineer pays too well to walk away from. That's going to take some thinking.

We're meeting with Acorn's staff and his new teacher this week, to get them all trained on his communication device. We're hoping for a really good year with staff who are ready to jump in with both feet and make things happen. Maybe I can ride that energy along with them?

Wednesday, April 22, 2015

Long Time, No Post

You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.

Except....they're not.

There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.") if fitting in is the be-all end-all of what someone needs to be successful in their lives.

Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.

Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.

Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.

Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.

So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.

Wednesday, November 12, 2014

6 years

6 years ago today, Acorn got his trach.

They tell you that sometimes things happen that change your life forever - I'm never sure I believe that really, because every day changes your life forever. You're older, maybe you learned something new, whatever - every day is different, even if they often seem the same.

But his trach was, in many respects, life changing.

He survived. He thrived. I met lots of other people who I would never have otherwise even said hi too on the street - some of them have become close friends over the years. I have become a closer friend to Death than I would have thought possible.

I've learned a lot about people (both in general and in specific). Who sticks around when the shit hits the fan, who slinks out, and who hides under the desk asking if you've finished sanitizing the room yet can be surprising.

Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.

But I also wouldn't trade it for anything.

Saturday, July 19, 2014

An Ending

Today is our very last nursing shift - as of this writing, there is less than an hour left.  Leaf was successfully decannulated (had her trach permanently removed) on the 4th of July. Happy Independence Day indeed.

It's just as well - the continuing little issues of having nursing have reached a point of overload, and I need to have my house back, where things don't disappear or get used up without notice.

Leaf has been going to daycare 2 days a week for the last month or so, and enjoys it. They're nervous about her g-tube, but they don't have to use it, so it's all good.

Acorn is in summer school 3 mornings a week, and at daycare the rest of the time, in preparation for Kindergarten, Take 2. He's made so much progress with speaking lately, that I wonder how much he'll need the new communication device we're waiting on - it'll be needed, but he can make himself clear now with some prompting.

And everyone got new bikes this spring - Leaf got an adaptive tricycle, and Acorn got a 2-wheeler with training wheels. Acorn is not so sure about riding his bike out and about, but Leaf is very serious about riding hers. We're hoping to plan some outings with some of Acorn's school friends to encourage him to ride.

So....yeah. There's a lot of re-organizing to do, and re-arranging in Leaf's room, and supplies to be given away, but we are officially a trach free house again! Time for a celebration I think!