Saturday, December 3, 2016


Friday, November 11, 2017

These kids are killing me. They haven’t slept past 5:30 since Danae left. I don’t know where they get this from. Danae and I could both happily sleep until noon every day if we didn’t have children or jobs. Ah, responsibilities. Booger.

I haven’t slept since Danae left. I text Danae late every night. I tend to sleep a little bit from midnight to 3am. Then I text Danae some more. And then usually a little bit in the early morning. This has been my routine since she left. I’m dying here.

This morning was no different.

My phone rang at two in the morning. About time I wake up anyway. It’s my mother-in-law. ‘Danae is trying to reach you to talk about Juniper.’ Ok. Thanks. No. No problem. I don’t mind. Yup. I’ll call her. Ok. Ok. Thanks. Bye.

It’s 8pm in Maryland.

Danae wants to talk about Juniper. They are switching her from IV quinidine to oral Coartem. Danae wants to know if I agree. Yeah, sure, that’s fine. I’m sure they’ll be observing her closely. Danae wants to know if two hours from the end of IV quinidine is too early to switch to Coartem. No, I think that’s fine. She’s still on the cardiac monitor, right? She’ll be off that soon enough and onto the regular pediatric floor, I presume.

We cover Juniper in about 90 seconds. Then I learn why she really called…

Danae’s doctor told Danae to skip across the street from the hospital to do another visual field test. Which she does. Which shows a questionable loss of vision now in the lateral field of the left eye, to go along with the near-complete loss of her medial field in her right eye. And kinda looks like more superior lateral than inferior lateral in her left eye, but it definitely respects the midline. Her medial field in her left eye is perfect. Her doctor thinks the loss in the left eye might just be artifact, not real results. Danae sends the same picture her doctor is looking at to some friends online. A couple of them agree it’s artifact. Five or six of them think it’s worth looking into, but might end up being artifact. The one we know and like and trust best thinks it might be real and needs to be looked into. So we start worrying.

The big deal is, if it’s real, that puts the lesion in her brain. Or, technically, darn tootin’ close to her brain, most likely someplace just posterior and right lateral and just inferior to her optic chiasm. This brings back up the possibility of aneurysm, tumor, cancer, multiple sclerosis. Not eyeball. Her doctor had wanted a complete blood count drawn from Danae for labs, but now we’re wondering what else should be done.

Neurology consult? Danae had initially declined since the MRI was normal.
Repeat MRI? Was the first one thin enough cuts to make sure we didn’t miss something?
MRA? Could there be a tiny aneurysm the MRI missed?
CT/CTA? Does she have some artery dissecting we’re missing? (Although that could just as easily be true for an eyeball problem too.)
Neuroradiology consult? Maybe a neuroradiologist with experience with hundreds of these would pick up something a typical radiologist might miss.
Lab tests, like ESR, CRP, folate, B12, B9, B6, B3, B1, Bee-gees, CBC, RPR, ANA/lupus/autoimmune labs, ACE lysozyme, urine and serum heavy metal screens, chest X-ray, quantiferon gold, lumbar puncture and cerebrospinal fluid studies…
B-scans of the nerves/OCT/ERG?
Optic disc drusen?
Heart echo?
We have no clue. We’re now reaching for anything that might give us the answer. An answer. Any answer. Half of these tests we’ve never ordered before. We are so far away from emergency medicine and obstetrics/gynecology.

Should I just treat Danae empirically for all manner of badness from parasites and vitamins? She IS a malnourished vegetarian missionary, after all:
B12 2grams/day x 2 days.
Praziquantel 2400mg tid x 5 doses.
Ivermectin 12mg/day x 2 days.
Mebendazole 600mg x 1.
Albendazole 400mg bid x 3 doses.

We decide it’s best not to treat on our own and actually let the real doctors have a fair crack at it.

We felt so good Wednesday and Thursday after having the normal MRI and the good visit with the specialist. Now all signs point to this being in the brain and being significantly more serious. We feel pretty positive about this. Something that will require surgery. Something that will be life-threatening. Something that will be permanently life-altering. Maybe get an aneurysm clipped or coiled. Maybe a surgery through the nose. Or cut off the top of her head to get to her brain. I’ve seen that once in medical school. Chemo? Radiation? I always thought Danae would be pretty good-looking bald. Better-looking with hair. But still pretty decent bald. I guess I should shave my head in support. Will we still be able to move to New Zealand for a few years? Will we still be able to move to France for a few years? Will we still be able to hike the Appalachian Trail, Pacific Coast Trail, Continental Divide Train, North Country Trail, and other trail? Will we still be able to travel the US by motorhome? Or travel the world by boat? So many plans we had. No, so many plans we have. We still have them. We don’t know anything.

And now Danae is freaking out a little bit. She never does that. So now I’m freaking out a bit. I was seriously just joking yesterday about being disappointed to not have a differently-abled wife. I want a whole wife. My wife. I want my wife to be whole. I want a stinking answer!

‘Don’t worry, babe. We got this. For better or worse. In sickness and in health.’ I mean it. Doesn’t mean I’m happy with the situation. I tell Danae to go to sleep.

I email Dr Hart at Loma Linda. He reassures me that if we arrive in Loma Linda, we can have anything we want done. That’s comforting. We’re going to stick it out in Maryland for the time being, but I always like to have a back up plan. Dr Landless emails. He’s been making certain everything goes smooth with us. My head is in a whirlwind. I’ve been up since two.

It’s 5:30. These dang kids are up. ‘Guys, close the door. Daddy wants to sleep a half hour.’ Graciously, the children oblige.

After worship, I fill in my father-in-law. He agrees this is serious. We stand at a 45 degree angle to each other, scientifically the best positioning for father-in-law/son-in-law relations. Close enough, same side, not invading personal space, aimed toward the same goals. We stand silently, staring off into space. I love my father-in-law. He gets me. He understands the importance and value of presence. He’s not intimidated by silence. I know he’s thinking the exact same thoughts about Danae that I am. I know he’s letting me process it while he does. My own father is better. But my father-in-law is a decent substitute in a pinch.

From the corner of my eye, it looks like his eyes might be welling up. But I can’t be sure, because my own vision is a hair blurry. It hadn’t really settled in for me this is his daughter too, not just my wife. We don’t really know what to do. But after the right amount of time spent staring off into space, we decide it’s time to work. So we do. He is like me. Work is our refuge.

Stop the rollercoaster already. I want off.

In the afternoon, it’s morning in America. Danae talks to the neuro-ophthalmologist. She has talked the case over with, according to multiple sources, the best and most experienced neuro-ophthalmologist in the world. They both feel this is retina, despite their lack of evidence.

Danae sees a second retinal specialist. She repeats her visual field exam. The retinal specialist doesn’t show her the test, but he tells her the left eye is normal today. Maybe yesterday’s panic really was all just because of artifact. This is a huge relief.

Then they do something like a retinal angiogram or some such.

The retinal specialist thinks it could be White Dot Syndrome. Except, he doesn’t actually see any White Dots. Nonetheless, I’ve never heard of White Dot Syndrome. I look it up. Well, it doesn’t look particularly lethal. That’s encouraging. It happens to about one person in 200,000. I find out an ex-girlfriend also had White Dot Syndrome. I’ve dated three girls in my life. The odds of two of them having the same 1 in 200,000 disease is roughly 1 in 20 billion. Cool.

Danae will get an MRA sometime next week, as well as see an infectious disease and tropical medicine doctor, as well as see an internist, as well as see another retinal superspecialist. Yeesh.

I’m so tired. Happy Sabbath.

No comments:

Post a Comment