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.

Friday, August 26, 2011

What constitutes child friendly?

Recently, Acorn and I spent a little bit of time at our local Pagan Pride Day.

Now, I'll admit to being biased - the event has had several different organizers over the years, and none have seemed all that organized, but this year was particularly chaotic. There was still no published schedule the day of the event; presenters were invited to email or call to find out their time slots, and as a former (and probably future) presenter, that would drive me batty. There's no published vendor list (and I'm betting, based on what I saw, that few, if any, vendors made their table fees), so those folks aren't getting any continuing advertising for their efforts. The combination makes me a bit wary of future involvement - running an event like this isn't an easy task, but these seem to be basic things that ought to be a priority for a festival.

At any rate, I guess you could say this event was child friendly, because it was in a public park, and the playscape was the focal point for the kids. We didn't stay all day, but other than this, I saw no evidence of anything that would interest children, other than the vendor with tumbled stones (who, of course, caught Acorn's attention - she had carnelian, and Acorn is obsessed with all things orange).

I've been approached about running kids activities at other local events. Almost no one wants to do them, and my previous involvement in SpiralScouts marks me around here as someone who does "kid things." And right now, I'm not really up to doing anything....but quite frankly, I do more than just kid things, and I don't want to be stuck dealing with other people's kids all. freaking. day. - especially at a festival, where I'd like to have an opportunity to enrich myself as well as others.

I feel like I've complained about this before, and I probably have. I just don't know where I put the various rants :)

One festival I attend regularly has a kids & families programming track, but the quality and age options vary greatly, and parents frequently seem to feel it's meant as a babysitting service. Many places don't even have that though - kids are discouraged from attending, or there's nothing for them to do at all, so parents are stuck figuring it out themselves.

Would it be so hard to have a kids' area with activities? Little mini workshops?  Are there any festivals out there that do an amazing job of putting together stuff for kids to do? What would an awesome kids' program look like at a festival?

Wednesday, August 24, 2011

Wordless Wednesday: Naked Neck Edition

ok, almost naked - that gauze & tape is in the way of nakedness.
Taken in the hospital's "Children's Garden Library," which serves as part of the play room

Tuesday, August 23, 2011

And it's done

Acorn has no trach - almost 12 hours without now. Took it out, put gauze and a piece of tape over it, and basically that's it, just sitting around now to monitor, and to wait for the stoma to close a bit. He doesn't seem to notice, but he does notice the nurses and doctors and residents and med students.

My spouse has Acorn duty tonight and tomorrow - I'm going to work. Then I have my turn staying at the hospital tomorrow night and all day Thursday.

Can I just say it's a little unnerving to be sleeping alone? I mean, I used to live alone. But it's been more than a decade since I regularly slept without anyone else in the house. And the last 2 1/2 years, there's usually been someone awake all night here, which just makes it more odd to me.

I think I slept alone one night this past spring when Acorn was in the hospital, but I didn't make it home until like 2 am after a marathon of pediatrician, ER, and hospital admission, so it wasn't sleep so much as falling over in exhaustion. Before was the car wreck my husband was in (car vs. pedestrian, and he was the pedestrian) a few weeks before Acorn got his trach. Before that....I think my husband went on a business trip about 5 years ago.

Meh. I should pump and sleep, because it's already been a long week. g'night all.

Thursday, August 18, 2011

Maybe I'm Just Strange

Some of you probably read that title and thought, "no, really? You're only now realizing that?"

Our news this week is that we have a tentative date for Acorn's decannulation: next Tuesday.

When mentioned to a friend, she said, "oh, I bet you're just so excited!"

But I'm not.

Really, it's just another procedure - and a minor and anticlimactic one at that, since we check into the PICU, take his trach out just like any other trach change (other than not putting a new one in) and hang out there for a couple of days to be sure no problems develop.

More than that though, I think my lack of enthusiasm is because the trach isn't the enemy, and never has been.

I know a lot of families who hate that their child has a trach. It's not what they had planned, and most kids with trachs have a slew of other issues to be dealt with at the same time (and believe me, Acorn has his fair share of those other issues). You can't go swimming with a trach, you're supposed to be careful not to get things in it, you have to know how to do CPR if it comes out, you have alarms going off all the time, and you're always worried in the back of your mind, what happens if something goes wrong.

For me, it was always just the thing we were going to do for Acorn to give him a better shot at a life outside of the hospital. The best option in a sea of bad options - the only option, really.

Oh, don't get me wrong, there are challenges. The zillion doctors appointments and follow up phone calls, the personalities and realities of having nursing at home, the equipment to lug around...but to some extent, I don't really feel like these are awful. They are, again, just part of the way things are.

And maybe it helps that we have always known that it wasn't forever. I don't know. I just know that I'm not nearly as ecstatic about this as some people seem to think I should be.

Tuesday, August 16, 2011


Today is Leaf's due date.

We're no where close to being home in the "due date plus or minus 2 weeks" that is typically quoted. We are, however, considerably past where Acorn was at his due date - a good 6 ounces heavier, wearing newborn sized clothes right on schedule, off the CPAP 6 hours a day and doing well with it, and there's milk in the freezer to last weeks....and I'm still pumping more.

This dress was really cute, but the nurses insisted she needed long sleeves to go under it:

And without the CPAP, with a hint of a smile:

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 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.

Monday, August 8, 2011

Blowing Bubbles in the Bathtub

Tonight during bath time, we discovered that the bath paints I bought on clearance didn't work, and Acorn wasn't into painting anyway.

So instead, we blew bubbles and poured water from one container to the other.

I was struck by this - funny, because it's not the first we've blown bubbles in the bath, or even in other parts of the house. But when I was a kid, both would have resulted in punishment. Bubbles were outside toys, so we didn't make a mess in the house.

Rules are funny things. Growing up in a house with a father who has sensory processing issues at best, and some sort of spectrum disorder at worst, we had a lot of rules that, looking back, had little rhyme or reason to them.

The thing is, those rules are so ingrained - so much a part of my psyche - that sometimes it's hard to break free of them even now.

But I do try - when my first reaction to something is "no" I ask myself why - what would happen if I said "yes," what would happen if I didn't yell.

And so, we blow bubbles in the bathtub some days. Once in a while we even blow them in the living room. I hope Acorn learns to blow bubbles sometime soon...and maybe then we can finally take them outside to play with us.

Friday, August 5, 2011

Deep thoughts

I wrote a whole post on this, but it was so stream-of-consciousness complicated that I figured no one would make heads or tails of it anyway.

So, let me sum up this week's insights:

Dark Goddesses have a funny way of showing that they care. Clearly, the one I'm attached to thinks I need to work on some things. Ms Big Dark & Scary had a lot to say in a very small number of words - she's blunt like that.

People who complain about their normal kids and normal lives irritate me - at least in part because while I don't think our little corner of chaos is so bad, clearly if their lives are awful, ours must be worse by their standards, and how dare they judge my life?

how dare they judge my life - see, there we go with things I need to work on again. It's not a contest. Maybe, perspective wise, their life really is awful. They're the same sorts of people who say useless things like "God doesn't give you more than you can handle" and Ms. Scary says, "aren't you glad I think you rate higher than village idiot?"

I wonder sometimes if being open to the possibilities that magick allows makes for a chaos filled life. I still don't know what the answer is, but I know that I ought to sit down a little more often and carve out time to meditate on that and on the guidance of my Gods.