nwhiker: (Default)
She's never had any real music instruction, though she participated in chamber choir for a year in high school. I think she sounds pretty good.

Sorry about the blank black screen! Took the video with my phone and Perry suggested the blank black screen to make it smaller, so easier to upload and share.

nwhiker: (Default)
Dh passed out after I got him home, post-wisdom tooth removal.

Anne-Chloe did too.

Today I'm 3 for 3. I took Perry in to get an ingrown toe nail dealt with... He was a bit shaky during much of the procedure, turning slightly green with the toe nail was nipped out.

He was sitting up afterwards, and not looking good. Then I noticed his lips were turning white, and whiter, and his skin was getting pale. He asked the doctor for a bag because he thought he had to throw up, the doctor left, two seconds later, Perry was out. Guy came back, got the chair inclined back and he came to VERY quickly. I only got a bit panicky, calling out "Perry. Perry. Stay awake. Answer me. Perry."

So yeah. He's fine. He was only out for a few seconds, but he was so freaking pale and his lips were completely white.

I am NOT taking any of my children or my spouse to any type of outpatient procedure by myself ever fucking again.

I feel like crying.

nwhiker: (Default)
Good news or bad news? It's really hard to tell.

AC is planning on declaring her major this fall (she's getting an extension so she can take a class this summer, because she's been a junior on classes completed for a while, and they want her to declare, but her major only accepts in the fall). She's planning on majoring in microbiology (and anthropology, with a minor in public health). Micro, up to this point, is a non-competitive major, just need a certain GPA.

But what should appear this week? The Center for World University's rankings.

And UW's micro department is rated 3 in the world.

I hope it doesn't prevent her from getting in. She's concerned as well. She meets the requirements already so if they don't change them, she should be good!
nwhiker: (Cottage Lake)
First the most important news: re-MRI today showed the epidural abscess about 1mm smaller (they didn't have the full radiology report, just that bit), which is good, though probably close to margin of error, ya know? Anyhow, pending review of the scan by the attending, the neurosurgeons feel we can... wait and re-scan in two weeks. Which is fine, since antibiotics working really are the best case scenario!

She's dropped her biology class, which will set her back a quarter for getting into the "competitive major" she wants, but it's a lab class and she's better of focusing on just one lab class, the chemistry one, which is part of a series, and would REALLY set her back if she had to drop that. We don't really monitor her grades, but we won't make a fuss no matter what she gets this quarter (as long as the chem grade is enough to get her into the next chem class!)

I just hope we can get full tuition back for the bio class. I hope, since the records of hospital etc are all there.

This weekend was busy busy busy. It was the State meet, and held over in Eastern Washington, in Wenatchee. We already knew we'd drive AC there, since she was supposed to get out of her bio class at 3:30 and needed to be in Wenatchee, 3 hours away, in about 3 hours, and the highway she'd have to take is... iffy at best. But because of the antibiotics, we decided to just go spend the weekend there ourselves... Only dh had the Dem district caucuses. Problem. I found the solution: dh, and Linnea, took the train back on Sunday morning, so he could be at the caucuses, and Perry and I would come home that evening with AC after she was done.

There is not much to do in Wenatchee, and what with getting out the hospital on Wed, we didn't have bikes ready, so we really had few plans of what to do. So I checked the distance, and the tour times, and Perry and I headed out to the Grand Coulee Dam. We'd driven by once before, but after visitor center hours. This time we got to check out the visitor center, and go on the tour, which was pretty cool, to be honest. They drove us out onto the top of the dam, something I'd done plenty of times on other dams in the pre Sept 11 era, but Perry had never.

Learned some interesting stuff, and since I'm SO totally a civil engineering monument geek, I was thrilled to be there!

Cut for photos... )

Anyhow, it was a nice day trip. Perry is a cool kid to be around.
nwhiker: (Cottage Lake)
Grumpy is good.

She finds her parents' ability to smoothly get antibiotics into her PICC line without tugging at her arm lacking.

She's annoyed that she has to OMG drive dh to work if she wants a car.

She's pissed off that she can't go off to the State meet (she's coaching) by herself without a parent/PICC-line-slave in tow.

She doesn't understand why we insist that medication be taken at set and given times, or why we think she should at the very fucking least help with keeping track of what meds/when.

IOW, she's doing fine.

I've escaped to school.

NOTE: this was written earlier, forgot to post. She's at gym now, I hope she's back in time for her next dose of antibiotics. I really don't want to have to monitor every dose....
nwhiker: (Cottage Lake)
It's been... a difficult few days. But OMG, it's been a pretty horrid time.

Thanks for all the support.

She's doing good. A lot better. I hope the imaging that is scheduled for Monday shows the abscess getting smaller.

At some point, I'll expand on my theory of why I think she got so terribly BAD on Friday. That was perhaps the scariest day of my life.

And a public thank you to those who commented on that panicked post. I should thank you individually, but I'm not sure I'm ready to re-visit that post.

We've done the first of many IV antibiotics. I suspect it'll get to be routine quickly, but right now it's scary. And -blah- the ceftriaxone? Smells like cat pee. Ugh.
nwhiker: (Cottage Lake)
She continues to do better...

The current plan is to let her out tomorrow and re-image on Monday as an outpatient, and she'll have an appointment after that with neurosurgery to discuss the findings. I hope I can make it, I HAVE to get to school on Monday.

Note what I said. Let. Her. Out. Tomorrow.

We have training tomorrow early afternoon to learn to give the abx into the PICC line and to take care of said line.

They are concerned, because of the changes in the MRI that the abscess might be encapsulating, which of course makes it harder for the antibiotics to access. Hopefully there will be changes in the good direction when they look again.

I was talking to a friend who is a doctor earlier today , and she explained a bit more about the process of elimination they do to pin down a treatment plan. Most of us, when we eliminate possibilities do so based on probability. "It's suddenly dark outside". Possibility? An unexpected thermonuclear implosion of the sun 8 minutes ago, Mt Rainier blew it's top, and ash is obscuring the sun, it's later than I expected and the weather has been stormy, or a the blinds failed and closed themselves. On probability, I'll start with checking the time. On catastrophic... well, let's just make sure there have been no sudden implosions or explosions and eliminate those possibilities first. So when they saw the scan results and immediately put her NPO etc, that was that thinking. Once they reviewed clinical finding etc, they dialed it back. That's at least why my friend said, and it -heh- really does seem to follow the pattern I've been observing.

So wait and see. She is not out of the woods yet, but I'm glad we're looking at a third data point. You can't see a trend with just two points. :)
nwhiker: (Cottage Lake)
Oh HAI. There is a fucking FIRE down the hallway. I don't think it's serious, but the engines have shown up etc. I can smell (burnt toast), and see the lights etc. Lots of personnel in the hallway, but the doctors, who are right across from us, are still sitting at their computers, so I'm at mine.
nwhiker: (Cottage Lake)
Both dh and I left for the evening, leaving AC on her own for a few hours.

Neurosurgery still hasn't come to talk to us, though everyone else has, at least twice, and they've all bemoaned the fact that getting hold of neurosurgery is a pain. That said, while I do hope NS comes to chat tomorrow, they did apparently add a note to AC's file this afternoon, saying that they wanted to re-image on Wednesday.

Hopefully we'll get to chat with them more tomorrow, but I guess Wed imaging will be our next decision point. We'll see.
nwhiker: (Cottage Lake)
The implosion of the universe is nigh, and the singularity will be centered in Seattle.

THE NEUROSURGEONS DO NOT KNOW WHAT TO DO.

This is kinda like 0/0.

The best(read: worst) part? They're coming to ask US what we think they should do. IOW, they'll be presenting us with a cost-benefit analysis.

FML.
nwhiker: (Cottage Lake)
AC continues to do fine, and we're still on the good news/bad news roller coaster.

They rescinded the NPO late last night, so at least we knew there would be no emergency brain surgery.

Then the ENT resident came this morning. ENT is not concerned, they're fine with waiting, and feel that the increase in the size of the abscess is within the margin of error. Yay, some positive news.

General medicine seems to think the same way. Yay again.

And then... neurosurgery shows up. Nope. They haven't talked with their attending yet, but at this point, they want to go in, open her up, and clean that out. At this point, they're talking about "a small hole". Jesus. Still need more details.

In the meanwhile, her PICC line will be going in a few hours.

And... she has thrush. I diagnosed that one. :(
nwhiker: (Cottage Lake)
So. We're waiting for neurosurgery to decide what they want to do. That's the fucking bad and scary and crappy long term prognosis news.

They apparently aren't planning on surgery tomorrow AM at the crack of dawn, so she isn't NPO at least, and can have some water and crackers.

I'm scared.
nwhiker: (Cottage Lake)
No details yet, because we haven't talked to the doctors yet, but they had the nurse tell us that the pocket is bigger, and AC is now NPO again. Waiting for the ENT to decide what they want to do.

Sick to my stomach again. All clinical signs were looking so good, I'm pretty sure we're not the only ones surprised by this.

My poor baby.
nwhiker: (Cottage Lake)
She had the MRI, after getting yet another IV put in.

Now we wait on the imaging results. Schrodingers cat, or in this case Schrodingers MR images have been taken, the uncertainty principle no longer applies, and my stomach is in knots, it will be until the results are back.

Fingers crossed.
nwhiker: (Cottage Lake)
Friday evening was flat out scary. Things were getting worse and not looking great. Decision was made to image Saturday because they thought there must be something going on. And not something good, right?

Saturday, she progressively got better. Which was nice. They decided not to do the MRI yesterday because clinical signs indicated they could wait and because her kidneys were iffy and they didn't want to do the contrast dye if they didn't have to, it's hard on the kidneys.

I went home last night and dh took the overnight shift.

Today, she's even better. She is still having a hard time eating, but chocolate appears to be staying down. :) They're going to do the MRI today, but for good reasons: they're hoping if it's done today, they can get the PICC line in and us educated as to its use tomorrow and she can GO HOME. Her kidney values got better, which is good.

The snag we've hit now is that her IV failed halfway through the MRI, we're now waiting for them to put in the 4th IV the poor kid has had.

And I think she may have thrush. Need to have the nurse check.

But overall, OMG, so much better.
nwhiker: (Cottage Lake)
I'm at home tonight, dh is the one stuck in the nasty hospital bed, while AC gets the comfy parent couch!

It's nice to be home. I haven't seen Perry yet, but I did get to squeeze Linnea goodnight. I've barely seen either of them since last Sunday.

Anyhow. When I left today, I think Anne-Chloe was looking a lot better. Still some nausea and vomiting, and still very very tired, but pain down, more interactive, just looking in general on a better trend.

Which is why they decided it was probably ok not to do the MRI today, because clinical signs are indicating that she's doing better.

I'm still concerned about her creatinine levels. They went up (due to the Vancomycin), and haven't come down yet. The stuff has a long half life so will be in her system for a while, but I was hoping we'd see some downward trend. But they have consulted with the kidney guys, so blah. We'll see.

I'm too tired to write. I'm going to bed. I might finish this tomorrow. Or not. Heh. Bed. My own bed.
nwhiker: (Cottage Lake)
The general medicine attending just stopped by. Considering that her head is better, she appears better, clinical signs are better and poking at the area is less painful, they think we should hold off on the MRI, though he will talk with the neurosurgeons who came in earlier, and the ENT folks to see if they agree.

Anyhow, the reasons for holding off are that her kidney number are not yet coming down and the contrast dye is hard on the kidneys, that if there is residual inflammation the ENT folks may want to go in, and there really hasn't been enough time to heal, and that the longer they wait, the better read they have on the situation. She WILL be getting an MRI before she goes home, and as it currently stands, they'd prefer to wait.

While I want answers and damnit, I want them NOW -make that YESTERDAY!- I tend to agree. The "morning after" surgery, when she was doing spectacularly better, reads to me as the anomaly, but if you discard that data point, she's been trending better.
nwhiker: (Cottage Lake)
NM that last one. It was horses, not zebras. She got her period a week early.

Which has her pretty horrified itself. She, like me, has been pretty much 28 days every month for as long as she can remember. We're off by about a week, so it's not just her not counting right.

Big sigh of relief. We asked her, but she said, "I've never not had a 28 day cycle for as long as I can remember". However, the next time she went to pee, it was obvious that she now had.

Morning update. She got my parent pull out couch. Her head still hurts, but the rest of the pain -back, neck, sides- is pretty much gone. I got the sick bed, and had to defend myself several times during the night. Shocker. I woke up with back pain. I do not, as a general rule, get up with back pain, it takes a lot. I can't imagine being stuck in this bed and unable to position optimally because of an IV to boot.

Plan today is imaging again, and we'll go from there. Dh is at Perry's regatta which is an all-day affair. I need a shower. And, quite frankly, to see my other kids, and to get some downtime. We'll make a plan to get all that in place later.
nwhiker: (Cottage Lake)
.... she has blood in her urine.

There is no place to hide and cry. I'm scared.

Dh won't be here all day tomorrow, Perry has a regatta. We thought it would like most of the others, morning only, but he won't be done until later afternoon, which means dh won't be here until even later.

My poor baby girl.
nwhiker: (Cottage Lake)
It's not the time of night that's important, it's the quality of the silence. When the room is dark and the only sound the low hmmmm of HVAC and the fridge condenser, and Anne-Chloe's breathing.

I hear her breathe. Regular and strong.

And yet, how frighteningly precarious.

Because we don't know.

It's her, her immune system, and the antibiotics, against the bacteria. And in too many cases, the bacteria win. For whatever reason. An overlooked pocket, a reservoir. An immune system that just can't keep up...

And that is profoundly frightening.

Because my child may die. And there isn't a damn fucking thing I can do about it.

Oh, we're not near there yet. But we could be. And the superstitious part of me wonders how I can even write these words, admit that this horror may come to pass. If I say it, I made it real. I turn it from an impossibility to something that has been brought into the world, an echo in my mind of Ged summoning his monster into Earthsea.

I'm terrified beyond words, the words I am not finding to properly encapsulate the black hole of fear that is at the core of my being. It is always there. And it is the realest part of me.

Tomorrow, more imaging. That will tell us if the headaches are... well, what? She still has them. The news, either way, is not going to be good, it's going to be bad (return to the ER for more sinus clearing), worse (need to go into through the eyelid to the brain cavity to attempt to clear it out, or worst (abscess growing, neurosurgery is going to need to go in, saws and all). As each scenario is thought through, it adds horror to that hole. And each time I ask her how she is feeling and she says her head hurts, a little more substance is sucked into that black hole, each time she rates her pain, each time she requests morphine, each time, each time.

I bend over and I kiss her forehead and the thought ricochets through my brain, "what if she never comes home?" I hand her her water, and think of Linnea sobbing last night that she wanted us to come home, she wanted her whole family back home with her.

How can I live, how can I exist, in a world in which that is a possibility?

Here, I am trying to voice these fears. In real life, I never do. I suspect, but we can't talk about it, that dh feels as I do, but that he too is afraid that saying it will make it real. So we give each other love and comfort, but not raw honesty, we say "I'm scared" but never "I'm scared she's going to die." But I think that fear is now part of both of us.

Externally we laugh, we joke, we talk to doctors, we pretend normalcy. Inside, nothing is normal. Because our child is seriously ill and terror is our essence.

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