Further updates on Teena's health, or Upcoming Road Trip To See The Doctor Least Likely To Screw Up

The neurosurgeon in Little Rock called us back this evening about 5 o'clock. It turns out that when the hospital performed Kristina's last spinal tap, they did the procedure incorrectly, rendering the results useless. So we'll be making a second flying trip to Little Rock. We need to be down there Wednesday morning for a spinal tap, under the skillful hand of the neurosurgeon, who seems to be the only medical professional in the chain that actually knows what he's doing. If her opening pressure is still high, then he'll put a shunt in a couple days later.

Grandma Jeanne (Teena's mom) is making yet another last-minute flight to XNA from Charlotte, and will be staying at our house with Aylin. She's been a huge help to us, and an amazing emotional support for Kristina. The sacrifice she's made, flying back and forth, staying away from home for such long stretches, is huge, and we appreciate her a lot.

We'll keep you posted as much as we can.

Teena update (11/26/12)

Kristina's vision, while still measurably better than it was at its worst, has degraded noticeably in the last 24-48 hours. We had an appointment with the opthalmologist this morning, and he's bumped by 50% the dosage of the medication she's taking. The opthalmologist and I both have calls in to the neurosurgeon in Little Rock to see what next step he suggests, and we hope to hear from him today.

If we're not in Little Rock, she'll have yet another spinal tap Thursday morning.

Kristina Musings

There has been so much to process, so much to absorb. I think my only hope right now is that we can settle into some kind of normal. Which right now, I'm not too sure I see happening, at least not soon.

The lumbar punctures are exhausting. Emotionally, and physically. There is at least one more in my near future. The more I have them, the more I hate them. But its a necessary evil until everyone can feel certain my pressures are normalizing. Which doesn't appear to be happening.

The flip side is that my eye sight has improved some, we'll know by how much on Monday when we get another field of vision test done and see the ophthalmologist again. At the most recent follow up with the family doc she was sure to hammer home the fact that I may not be better yet, but I'm getting better. I have improved, just not how I may have liked - or as quickly.

This has been so difficult for me. I've had to lean on others more than what I'm normally comfortable with. I have to ask for help regularly, which is not easy for me. I get fatigued easier than I'd like to admit, and asking for help when I can't see well is so hard. It's been hard for me to even get used to the fact that I don't see well. Tripping over things, and if you're on my right side while in a parking lot or in a store its almost a guarantee I'll bump into you. I zig zag pretty bad if I'm not pushing a grocery cart, or holding someone's arm. Not to mention the fact that I obviously can't drive. Not being able to work and barely keeping up with my kiddo half the time is quite the contrast to the corporate working mom bit I was trying to keep up with. All of this change has been so overwhelming. All we can do is take it one day at a time and as best we can rest in the knowledge that He has a bigger plan that will come of this than any of us could ever imagine.

Thank you all, for your love and support.

…and now some not-so-good news.

Yesterday Kristina had a follow-up spinal tap to check fluid pressure and make sure the drugs are working. The results were somewhat disappointing. While we don't think there's an urgent need for action, rising fluid pressure means we can't drag our feet.

I'll be pinging the neurosurgeon in Little Rock first thing Monday morning to see what he thinks about her test results. We're also scheduled to follow up with our primary care physician Wednesday, but in all honesty, she seems to be learning about this condition alongside us. So she's primarily a referral engine, albeit a sweet and concerned one. I'm going to try to get Kristina in to see a second opthalmologist this week. I think we need another brain on this, and I have a great deal of confidence in the guy to whom I'll reach out. I have some gut-level question marks about the opthalmologist we've been seeing.

Physically, Kristina's pretty tender and sore from her third lumbar puncture in as many weeks. She's been run through the ringer. We're all emotionally exhausted, and the frayed edges are starting to show.

Keep on asking; keep on knocking.

Better news today…

Kristina had an opthalmology appointment this morning, and we got some news about which we're cautiously optimistic. Her vision, while still quite poor, has improved measurably. We're not out of the woods yet, but she is improving. The meds are working. Her doctor said there does appear to be some permanent nerve damage, but he was a little less gloom-and-doom today than the last time we saw him.

More follow-up appointments. More news to come. We'll keep you posted.

Going home tomorrow. Finally.

We cooled our heels in the Rock all day, waiting to hear from the neurosurgeon. He finally called us about 4:30 this afternoon. We're good to go home.

What's next? Lots of doctor appoinments. At least one more spinal tap. Maybe some more detailed imaging. Hopefully no more emergency room trips. Everyone is very concerned that we stay on top of this to make sure Kristina doesn't lose any more of her vision, and for a while, that means we'll all be nervous as junebugs in a henhouse.

We hope the drugs she's on will continue to do their job, and that Kristina won't ever need a shunt. Shunts seem to be troublesome little critters, with something like a 50% success rate, and about a 50% revision rate. That means there's a two in four chance that the shunt won't work at all. If it does work, there's a two in four chance she'll need surgery again somewhere down the road to have the durned thing worked on. So, for you math whizzes, that means there's only a one in four chance that it works and never needs worked on. That's not good. We'd like to pass on that, please.

All that means we're not out of the woods yet, but we'll be home, and as of Friday afternoon-ish, we'll have our kiddo home, too. That's worth a lot.

What will we need? Well, if I'm honest, I just want our life to go back to its quiet, little routine, but that ain't gonna happen. We're going to have to find a new routine. We love that there are folks in our lives who want to serve us by bringing food. But here's the thing: We don't really need that right now. There are folks who need food a lot worse than we do, and Lord knows it's about time I cooked something besides frozen pizza. Kristina's mom is back to help us for a bit longer, and that has been a huge blessing for us. We could not have managed this without her moral and practical support.

And if you absolutely must do something, if you're a giver like that, head over to purecharity.com and pick a project to send a few bucks to. We're big fans of 99 Balloons in our house, but there's a little something for everyone over there. Or you can pop over to Givington's and purchase a little something nice and fund a cool charity project. Or take some food to the Samaritan Community Center, or to 7 Hills Center. We're big fans of the work those folks are doing.

Come visit, either way. Or call. Or text. Email. Facebook. Good Lord, we've got plenty of ways to be in touch. Pick one and send Kristina a little love. She needs the tender heart and the warm hugs of the Body of Christ right now more than the cook's hands.

Now, if you'll allow me a moment to wax philosophical, read on. If you have no patience for that kind of stuff, we're done here. Go back to being mad about the presidential election. Thanks for checking in. But you're going to miss the best part…

By all means, do everything you can to take care of yourself. Just remember: Shit happens. This thing came up out of nowhere and no one seems to understand why. We can point to none of the known causes of this condition as triggers in Kristina's case.

Could things have turned out differently if…? Maybe. And we'll look into a few of those questions. If we find that some answers are in the affirmative, rest assured, we'll deal with that appropriately. But the simple fact is that lightning struck. Boom. And everything changed. Random? Yes. Redemptive? I have no doubt. That's just how God works. Mysterious, huh?

This is a broken world we live in, y'all, marred by sin until our King and Christ comes again to redeem it for what it was meant to be from the Beginning. The control we try so hard to exert over our lives results — at best — in our living a dangerous illusion. Remember the One who made us. Honor Him joyfully, for He has already effected the redemption of all things.

It is finished. Already, and not yet.

Some useful information about Kristina's condition

A doctor-friend of mine sent me this link. It's got some pretty good, quick info about the condition affecting Kristina, and it can help give you insight into our difficult decision process.

The shunt that we've been discussing is the lumboperitoneal. I'd been under the mistaken impression that they'd be shunting from near her brain. That is clearly not the case.

Teena update. Last one today, I think.

Dr. Reding doesn't think a shunt is strictly necessary, so we're going to forgo that for the time being. He may decide he wants to do another scan tomorrow before we leave Little Rock, so we'll hang around until we hear from him one way or the other. We're on the same page with him, and though there's no feeling good about what's happened, we're as happy as we can be with where we are right now.

At this very moment, Kristina's not feeling real hot. Emotionally and physically exhausted. She's been poked and prodded and dragged all over God's creation through this thing, and she may be seeing the beginnings of another spinal headache. The doctor did all he could to avoid it, and they kept her under observation for quite some time, but the ride back to the hotel, up the elevator, etc., well… We're just going to have to wait and see.

It's likely she'll have to have another spinal tap next week, just to check and make sure her fluid pressure is still under control. Kristina doesn't look forward to that, but it's preferable to major surgery. We can expect lots more visits to the offices of medical professionals in coming weeks and months. We feel like we're finally in capable hands, so that's an answer to prayer.

Aylin seems to be doing well at my dad's, and that's a huge relief for us, and is another answer to prayer.

Look for more tomorrow. Please continue to pray. We are not out of the woods yet.

More on Teena (11/06/2012)

Kristina's fluid pressure was on the high side of normal. Dr. Reding, the neurosurgeon, has yet to decide whether he thinks she needs to have a shunt put in. They're going to keep her for a few hours of observation, and he's going to talk to an ophthalmologist friend about whether surgery is called for.

By 6 pm we should know something. Either way, we'll be here another night.