Tuesday, November 29, 2011

Little Bits and Bobs

It's been busy here. I'm still catching up on laundry from Acorn's week in the hospital and dishes from Thanksgiving.

Leaf is still in the PICU and still vented. We're hoping that we're finally making progress in getting her off the vent, but it's really all up to her.

Acorn is home from the hospital as well, and back to his normal self, other than the return of nightmares. It's been a long time since that was a multiple times a night every night thing, and I don't really know how to help him. He's come up with a handful of new words this week though, and has been more actively signing things since his hospital stay (though sometimes he's just signing "yes" when he means "I want that thing over there"

I've been trying to spend my evenings in the PICU writing. Some days it works better than others - but there are projects in the works and things that need to get done. At the very least, it's time to wind down from being "on" all day with Acorn. We're both adjusting, and it's a process...we're not comfortable with it yet, but we'll get there.

I have nothing really deep to say right now - just too darn tired after a night of being up a fair portion of the night with Acorn when he's having nightmares. But I do have a post already written for the 21 days of Yule over at http://thepaganhousehold.com, so be on the look out for that in December.

Monday, November 21, 2011

Worlds Apart

I'm sitting here in Leaf's room tonight, listening to the radio and having a bit of time to wind down after a particularly whiney day with Acorn (and no nap, so no break in the whines all day). It's calm here - quiet; the soft click-huff of the vent makes a rhythmic counterpoint to the easy listening station playing over the hospital's TV.  The furniture is at least as comfortable as Starbucks (which is to say, not very, but I am starting to think that the rocking chair might work better if I use the chair I'm sitting in as an ottoman).

Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.

Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.

It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.

Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).

Some people seem to think that I must need someone to talk to.  No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.

I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.

Wednesday, November 16, 2011

Does the hospital give multi-child discounts?

Last night we took Acorn in to the ER, wheezing and coughing even with his breathing treatments. He's staying there again tonight, with hopes to go home tomorrow.

Leaf is just down the hall and around the corner in the PICU. She's still on a ventilator, still sedated, but they're slowly weanng her vent settings.

Too bad they couldn't throw them both in the same room. I moved Leaf's altar back into her room over the weekend (it hadn't all found a home yet as we were still unpacking from moving out of the NICU), but we only have one altar setup for the hospital, and I have two kids there, in two separate rooms.

Oddly, there was already a chaplain in Leaf's room when I arrived the morning she was intubated. She was not yet intubated when I walked in, and in fact I had only stepped off the elevator. I wonder how they know when to show up?

We're finding the regular pediatrics floor somewhat interesting. People don't know us (well, nurses don't know us - it's still mostly the same respiratory therapists that we've worked with since Acorn was born). There's dismay at all the things that have to be done in particular ways for Acorn - they want a compliant kid who they can do anything they want done on command. I guess the'll either learn, or not.

When I said I wanted my family together, I didn't mean in the hospital....

Sunday, November 13, 2011

This PICU stuff sucks

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain

--Frank Herbert, Dune

It has been a long time since I've truely feared anything. Several years back, the request I finally brought to Big Dark & Scary when I thought I was ready for her was, "I cannot continue to live in fear of so many things, please help me."  The interesting, and somewhat unexpected, result of that discussion, was that I became aware of what things are worth fearing, which has the side effect of putting me back in control of the fear.

The possibilities here with Leaf? The ways this could go so terribly wrong?

Yeah. Those count as being worth fearing.

But not worth drowning in the fear, which is where I was yesterday. Today is marginally better on that front, even after a 3 am phone call letting me know that they drug the attending physician out of his bed at home to come consult after things again got worse yet again.

I've always liked the Litany Against Fear - it may be the only part of Dune I liked, because I really wasn't fond of any of the Dune novels when I read them in high school, and that's saying a lot for me, given my voracious reading of everything, but particularly sci-fi and fantasy.

And in terms of being mindful and present....it's a good reminder that I can be afraid without losing myself in the fear. That in the end, the fear will pass by, and I'll still be standing here, no matter what happens.

Saturday, November 12, 2011

And Back Again

Leaf wasn't feeling well Wednesday, so we went to the pediatrician. Everyone felt it was just a minor virus, and we could ride it out at home; she was cranky and feverish but otherwise unfazed.

Thursday morning she had a cough, but was in a much better mood. Thursday evening, she was getting progressively congested, so we ran some albuterol, called the pediatrician, and headed to the ER, fully expecting to be admitted for observation.

Friday was calm, but still with a lot of coughing and nebulizers.

Saturday morning, they called to say that she was being put on CPAP, and that they'd put an IV in to give IV steroids instead of oral, and to switch her reflux meds to an IV. We finished up breakfast and I headed that way within an hour of the first call, intending to hang out for the morning and comfort her...

...and my phone rang as I stepped off the 5th floor elevator, with news that they were going to intubate because CPAP wasn't working. She'd been just fine overnight, and things had gone downhill over a 2 hour period from "just fine" to "not good."

So, the good news is I was there. I saw her without the vent, and saw how much more comfortable she is with it. I'm not happy about it, but this is exactly why she was in the PICU to begin with - we knew that if she ran out of reserves, or her illness got worse, things would get messy quickly. We can handle a lot at home, but definitely not intubation.

Have I mentioned our life often feels like an episode of House?  This PICU stay is no different.

Her first viral panel was inconclusive - not a big enough sample, which is hard to believe.

Her second panel came back clean....which leaves us all scratching our heads, because everyone was *sure* she had RSV (hey, at least it's not RSV!).  The reflux makes us all think she might have aspirated, but then why would she show no signs of pneumonia from the first sign of sickness Wednesday until just now? Additionally, today she stopped peeing, which makes no sense at all, but there was plenty in her bladder.

So....the plan this afternoon was to take blood, urine (via catheter) and secretions they're suctioning from her lungs and culture them to see what comes up. At this point, they have no real clue what the culpret is, and so we wait.

This is not the quiet week at home we were supposed to be having.

Wednesday, November 9, 2011

An update from the home front

We did, in fact, make it home on Saturday, though not without some bumps in the road. Who knew that the 2 most common meds preemies leave the NICU with are not available at normal pharmacies? And who would ever think that the hospital's internal pharmacy can't look up insurance card detail in the hospital's system for discharge meds?

Anyway, we're here. We're struggling with reflux, and with a stomach bug that Acorn brought home from somewhere (likely daycare) and shared. Leaf seemed relatively unfazed, but today she's amazingly cranky and getting moreso by the hour. Our most recent feeding appears to be the first in nearly 36 hours that she hasn't spit up (though saying that may jinx me). We started reflux meds yesterday, a very mild one, and I'm hoping it gives us a bit of breathing room.

Leaf often sleeps with her eyes partly open, which is unnerving. Other than the last few hours, she's happy, smiling, and what normal people would call a "good baby" - she doesn't cry much, she sleeps well, she's happy to be held or not, she's great in the car as long as it's moving. In special needs terms, she appears to be socially appropriate, and other than her severely flat head and her torticollis (stiff neck), she looks to me to be on schedule for her adjusted age. The therapists will be here Friday and Sunday to evaluate her for in-home therapy for the winter, and it's our two favorites from Acorn's in-home therapy days, who we will be happy to see again, and who I'm sure will enjoy seeing Acorn again.

We are no where close to finding our rhythm - and we're adding more appointments every time the phone rings. Acorn's last day at daycare is Friday, so that'll add another layer of chaos too. But we'll get there.

...at least, I hope so....