What we know

First, an update on Bobbi. That one's easier.

We've made it since right before midnight last night without any of the heavy pain meds for Bobbi, managing it all today with regular doses of regular old Tylenol. Nice. She's had a few periods of discomfort, but nothing she couldn't work through. Today, too, she and Dad (and our friend Faith, who helped us out when she and Mira first arrived home from Bulgaria) went back to Gillette to have "windows" cut in the heel of her casts to relieve some of the pain she'd been having at that location.

They also stopped in to visit Mira.

Matt has not been able to spend nearly the time with Mira that he would like to be able to this time around. It is an odd sort of relief to know that she, being blind and deaf, and so impaired cognitively, is not particularly bonded with any of us, so she isn't particularly aware, so far as we know, that we are not by her side at all times. She's had enough stays there, that there isn't a shift where she isn't being attended by doctors who know her well, and at least one nurse who knows her, too. She is in good hands even when we can't be there with her.

We got a call tonight from her doctor (she's still in the PICU - they'd been thinking yesterday that it would be a short stay to stabilize her low body temp before transferring her to the regular floor, but it's turned out to be over 24 hours so far, with no sign of anything changing yet). He reported that her heart rate is in the 140s, and her body temp is up above 104. He was asking what we do to help calm her when she gets like that, and our response is that she doesn't get like that when she's home. The things we do when she's uncomfortable, like giving her an extra session in her Vest, or Daddy massaging that spot in the palm of her hands, aren't enough to counter this. She's also on a fairly high level of oxygen, and still only maintaining saturations in the low 90s. She's having a rough night, poor girl.

In the meantime, I'm here at home trying to keep up on various paperwork, Matt's trying to hit a work deadline for Friday for three different jobs, and Bobbi's taking her first venture out of her room. She's sitting up with Owen and Leah watching her overdubbed cartoons in her loaner wheelchair.

While we've slept *some* over the last three nights (unlike the two before that), they have not been full, restful nights. We could all use some good sleep. I'm really hoping that with her pain in a better place, AND being off the narcotics, that tonight's sleep has the potential to be more truly restful. Matt and I are camping out on cushions spread all over the floor of her room so we're there to adjust position, etc, as she needs it during the night. That means neither of us is in with Reuben, so we're kind of coasting on the fact that his bad seizure nights come with a few good nights in between. Tonight might end up being his bad night, however.

Rather than go into detail about how we've been surviving (not much more than that, but definitely still surviving, thanks in part to many generous friends giving of their time in various ways), I want to do two things: first, I want to send you back to the post I wrote about talking with Bobbi about her upcoming surgery. That, combined with what God's been showing me about being grateful in everything makes all of these things possible to navigate mentally. I have no idea why all of this is pouring in at one time - I have been only sharing the very tip of the iceberg of the various challenges that our family has been facing over the last two months or so. There are many heavy cords interwoven with fine threads ranging from our 19 year old cat dying to the birth of a baby (joyful, but sure adds another level of complexity in those early days when Mom's completely tied up) to a planned surgery to an unplanned PICU stay that it's awe-inspiring to have the image in my head of God pulling all of this together for a purpose to break what needs to be broken in me and to strengthen what needs to be strengthened in me (and not just me, but every single person who these different events touch).

With that, here's thing number two: I have a story for you, which fills in some of the details I was missing here.

So, Saturday night, about 7pm, Bobbi was discharged from the hospital and got to come home. That began a truly miserable night, culminating in a 4:30am 911 call when we'd exhausted our options for pain management, and her anxiety over the pain (not helped by the narcotics) causing the pain to escalate even further. Poor girl. Matt followed the ambulance down to the hospital in our little Jetta (easier to park!) and spent a few hours there not sleeping while they got things calmed down a bit, and swapped out one of her meds to give her something more effective at relaxing her muscles. Then they wanted to send her back home. (Yikes!!) So Matt had to drive back - so nice that we're so close! - and swap out for Big Blue because she doesn't fit in the Jetta with her casts. Honestly, we'd been thinking with the state she was in that she would be readmitted and he would not be bringing her back home that same morning, which is why he took the Jetta in the first place. He parked the Jetta way up on the driveway next to our trailer to give plenty of room to navigate Big Blue on the return trip, came in, got some breakfast, gathered a few things, and about 45 minutes later was back out the door to bring her back home.

I realized that we were going to need some extra hands during the day, because caring for her was a full-time-and-then-some job for both me and Matt during the night. We were both terribly fatigued, and knew we had a day full ahead of us. I made two unsuccessful phone calls while staring out the front window. Then I saw the Jetta heading down the driveway, and I mindlessly wondered where Matt was going...and then remembered...Matt had already gone!...the Jetta was leaving the premises of its own accord!!!! Phone in hand, I dialed 911 for the second time that morning (is that what you're supposed to do for runaway cars? I don't know.) Somehow, the car made it down our curving driveway, over the low garden wall at the bottom, across the street, through the ditch, across the west-bound highway lane, into the central ditch where it settled down and there it sat.

You have to zoom in, but it's there if you look.

Um. This is not good. The woman I spoke with from the highway patrol was delightfully kind, and said not to worry at all since it was out of both drive lanes. I called our neighbor and she took on the task of getting it towed out of the ditch. Then I emailed our pastor. "We need help..." And help came in the form of Faith and her mom (who is in our small group bible study).

It's kind of a scary thing to realize that you are so sleep deprived that you are (apparently) missing really important things like making sure your car is properly secured before leaving it, but the story became even more curious when we learned from the man who towed it out for us that it was in gear and the parking brake was engaged when he checked it out before towing it out. It started for him, too, amazingly, as he turned it a bit to get a better angle for the tow.

What in the world???

I'm only being slightly facetious when I say that the only option I can think of is that it was the hand of God that pushed that car down the driveway.

Because, apparently, we needed just exactly that much more stress layered onto that Sunday. I remember thinking at the moment as I was thanking God that my car was running away down the driveway that there must really be some truly marvelous shaping and forming that is going on. The precision with which my Surgeon is breaking and cutting and re-shaping is incredible.

I went out the next day to survey the damage done to my garden. I really, really enjoy my gardens (even to the point that I keep a crazy little blog that only I have the address for where I post photos of what's blooming, show me and the kids working in it, tell stories about plants that have come with special memories of friends and family, and talk about the progress, or lack thereof, of Matt's and my vision for the yard. It's fun having almost an acre to play with, and all of the raw material from his grandma's amazing perennial gardens). The garden at the bottom of the driveway is a newer one, and the limestone wall along our edge of it is still being constructed at the top edge. Just not this summer. Nothing at all happened in the gardens this summer, and only a little bit last year. When my parents' friend Carrie spent a week with us in June, one thing that really mattered to have her help with was mulching that garden around a few new plants our neighbor split off and shared with me so that I had one. nice. tidy. place that gives the impression that the home and yard is being cared for. It looked really nice all summer. To have that one bit of garden-sanity that we have this year get run over by my own car was not missed by me.

And yet, beautifully, when I went out the next day to inspect the damage as I checked the mail, (Oops. Columbus Day. No mail.) this is what I saw:

Since it's hard to see, here's a photo-shopped version to help you see the track that the tire made as it went through the garden.

It crushed one begonia (an annual - not a big deal in October), but ran right in between the others and my wild geraniums. It missed the daylilies, and one sedum was hit, but only lost a few branches. It will come back just fine in the spring.

The only real loss out of the whole thing was my favorite piece of limestone that I had placed carefully to work as a seat while we wait for buses at the bottom of the driveway.

Now that's the precision work of an extremely talented surgeon, if you ask me.

For some reason, the whole thing with the car has served to be a hugely tangible reminder that not a single thing that happens during this extremely strenuous time is happening by accident. It is all designed just as precisely as the way that car ran through my one decent looking garden.

Thank you to all of you who continue to cover our family in prayer through the weeks ahead.

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Matt just got off the phone with the nurse in the PICU. I'll have him type a brief update after he gets back downstairs from where he's helping Reuben through his second big seizure of the night.

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Mira is, as of last report, calming slightly, but is having a very tough evening/night. Her heart rate was in the 170's at times and her respiratory rate in the one-teens. That explains the high temperature...that is working extremely hard. After two doses of valium, a dose of ativan and another higher level sedative that I am not remembering currently, her heart rate is down into the one-teens. She is running between 50 and 60% oxygen (room air is 21%) and even with that, at some of the worst times her oxygen saturation was in the mid 80's. The nurse said her lungs still sound like they are moving air, but something is making it hard for her to get oxygen into her blood and is causing her to be very worked up.

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Next thread...Andrea will be leaving shortly to take Reuben down to the ER. We will have to explain more on that one later.