Sunday, November 27, 2011

PICU stay!

Well we've had an eventful week! Last Saturday, Charlie spiked a temp and needed oxygen...the usual with any illness. I knew it was an illness and not autonomic because it didn't go away with her night time dose of Clonidine. So on Sunday I took her in because she was getting pretty bad.

She was needing more support than just the high flow mask could give her, so they stuck the CPAP on her and she went up to the PICU. Her labs came back positive for Rhinovirus and Human Metapneumovirus. Fun, fun! (not)

This is the first time she's needed more than the high flow mask for an illness. Of course, she's trying to beat TWO illnesses, but still, I hate that she needs it.

But here's the catch. Remember how she's been having so many more autonomic problems? She's been full-blown storming 3 or 4 times a week. Since she's been on the CPAP, she hasn't stormed once. The most she's had is a little face flushing and that was AFTER they decreased her oxycodone dose (long story).

Apparently, the fact that she has to work so hard to breathe all the time could be CAUSING the storming, not the other way around like I thought. I took her home on CPAP. Her doctor and I both thought she'd get better care at home and so he ordered the machine and we took her home by ambulance on Friday since the machine is not portable. She might take a while coming off the CPAP and goodness knows a two week PICU stay doesn't benefit anyone! Can you imagine how much Medicaid has to pay out on that? Yikes! She's doing great at home. I'm considering this a good time to "experiment" with this CPAP/autonomic theory. Her Oxycodone dose is down, her storming has stopped. I'm not trying to wean her off CPAP just yet. I want to see what happens.

Then we have a lot of talking to do with her doctors. And I'll have a lot to think about. Really, I never imagined I'd do a 180 on how I feel about breathing support. But I've *always* been all about quality of life. And storming 3+ times a week and being on high doses of narcotics is NOT better for her quality of life than even something as invasive as a trach. If she had a trach and could come down on her meds and not storm, THAT is a better quality life. She's absolutely fine and happy with this mask strapped to her face (in fact she gets mad when we take it off because she knows it is what is helping her breathe) so I have no reason to believe she'll be upset with a little piece of plastic at her neck.

Anyway, here she is, happy to be home!


The Unashamed Christian said...

I can honestly say our life was a lot less stressful since getting the Trach. Best of luck in your decision and I'd be happy to answer any questions from someone who lives it everyday:). Ava definitely doesn't mind having her little plastic tube in place;).

Shauna said...

Yeah I was going to call you here in the next couple of days to pick your brain. :-)

Katie said...

Aw, poor girl! Good luck on determining a solution.