Pooh

Pooh.

Pooh. It’s everywhere. It’s like a sewage treatment center decided to go Al Qaeda and blow itself up. In my house. There’s poop on the floor. There’s poop on the towels. There’s poop in the tub. In the tub. Poop. In my tub. Where I wash. There may be poop on the coats. I don’t know. Step in vomit on my way to the trashcan. I make a mental note and add that pile to the list of places to tiptoe around. I throw the towels into the laundry basket and make another mental note: It’s time to give the laundry lady a raise. She washes this excreta by hand. One thing when it’s the baby’s diapers. Another thing when…

Two hours prior…

I’m doing some AHI work in the bedroom and distracting myself, frequently playing with the two girls and Zane. Lyol was off playing outside. I come into the kitchen to start thinking about making some dinner. Addison comes to tell me Mommy’s vomiting.

I peek into the bathroom. Girl don’t lie. Mommy be retching. Need anything? No? Water? Juice? Crackers? Bananas, rice, applesauce, toast? Ok, cool. Let me know if you need anything.

We live in Tchad. We barf. It’s what we do.

Mommy goes into the bedroom. For a minute.

Mommy sprints back into the bathroom. Mommy tosses Mommy’s cookies.

Mommy comes out of the bathroom. Mommy goes to the kitchen. Mommy starts puking in the kitchen sink. Where our food comes from. Where we bleach our food. Mental note: Add extra bleach to the next sinkful of fresh fruits and veggies.

Her hair is already tied back, so no need for my assistance there. I reach around her head quickly and turn on the faucet to start the drainage. I narrowly miss the splash zone. Whew.

Mommy grabs a bucket and goes back into the bedroom. I inspect the sink and turn off the faucet.

I hear Mommy upchucking into the bucket in the bedroom. Crossing fingers it isn’t splashing onto the sheets.

Mommy has a pause in her ralphing. She runs to the bathroom. No love. Lyol is already on the toilet.

Mommy starts hurling into the tub. So not cool.

Mommy needs to defecate.

Lyol is still on the toilet.

Mommy decides to make a break for the other toilet. The one we never use. Because it’s nasty.

Mommy makes it. Barely. Mommy takes a dump.

But then Mommy starts dry heaving. I grab her a fresh bucket. Mommy decides to make a break for the original toilet once Lyol is done.

Mommy. Doesn’t. Quite. Make. It.

Mommy has pooped extra-toiletally. Extra-toiletal poop is not poop we find funny in this household. It’s not funny poop.

Mommy just lays down. In it. And it doesn’t stop. This has officially developed into a literal poopstorm.

Mommy would be going caca in her pants. But she’s not wearing any anymore. And a thong is not very… protective… of my towels.

Mommy is still spewing out her mouth too. But she’s no longer sitting up to do that. She just turns her head to the side and lets it dribble out. Mommy has given up. There is no more sentiment of personal pride. There is no more caring about appearances. Until Daddy starts writing a blog about it. But for now…

Mommy needs an IV.

I call Ndilbe while I run up to the hospital to grab the necessary medications and supplies. Ndilbe comes and gets her IV. Before he gets there, she grabs a few more towels to cover herself up. Mommy has now relieved herself on the towels. I would say she’s having a BM, but there doesn’t seem to be much ‘movement’ going on. Just an open tube, leaking. My mental notes are getting numerous. But those towels just became guest towels. Sorry if you come to visit. I. Just. Can’t. Ever. Again.

I give Danae a bottle of IV fluids with Phenergan for her nausea. Along with a couple ampoules of Vitamin B and max dose cimetidine. Then max dose IV Flagyl. Then max dose IV Cipro. Then more IV fluids. She wants a bath. Would you like that in bleach or alcohol? She doesn’t find me humorous.

I run a warm bath. She crawls in.

I go out and feed the kids dinner, checking in on her frequently.

Ummm… Sweetheart… did you just evacuate your bowels in the tub? Yeah? Ok. Cool. Mental note: Outdoor showers are coming back into vogue. Build one tonight.

Darling… there seems to be more fecal matter in the tub than there was last time. Did you just turd in the tub… again? What do you mean you’re not sure? How many times can you go number two?

Dear… can I drain the water and refill the tub for you? Why? Because there are so many chunks floating about I could practically walk on water. Look right there. See that? It’s like an entire tomato peel. I can tell you exactly what you’ve eaten in the past 24 hours. And what you haven’t chewed thoroughly, which appears to be everything. This bath is about equal parts water and liquid stool.

Poor girl. The Phenergan has completely knocked her out. It does that to me too. She barely knows what’s going on. Or what’s going out, for that matter.

Ummm… ummm… ummm… Honey, would you like me to help you shower the tub poop off of you before you get into bed? No? Ok. So you’re just getting out of the poop tub and going to lay straight down in our bed with tub poop on you? Ok. Cool. Ummm… yeah… cool… ok.

I put the kids in bed.

And now here I am, trying to makes sense of the gruesome war scene before me. A little shellshocked. A little PTSD. I’d make a horrible soldier. If this were real war, some sniper on the ridge could totally cherry pick me. I’m standing in the middle of the living room. I look up at the ceiling fan spinning mockingly over my head. Is it possible some of the poo hit that fan too? This is carnage.

Can one human really create so much feces? This just ain’t right, man. ‘For better or worse’ might not have considered this… I mean, how could you imagine this? This was covered neither in pre-marital counseling nor high school Marriage and Family class. All I had to do in high school was carry around a sack of flour all day. Not a sack of doo-doo.

I double check the kitchen sink. I rinse out the tub. For the second time. I consider the sterilizing effects of gasoline and a match, but I decide to take less extreme measures. I put the towels in the dirty laundry. I wipe the vomit up off the floor. I collect the barf buckets.

And I keep giving Mommy fluids throughout the whole thing.

We have cholera beds in the hospital. They’re regular beds, but with holes cut in the middle, where the butt goes. Because these patients can’t even get out of bed. They just poop where they lay.

I set up my bed on the couch.

I’m pretty sure if I get into our California King bed with her… I’d be pooped upon.

All night long, I keep replacing fluids.

I don’t know if this is cholera, but cholera patients can poop 20 liters a day of fluids, and 10% of their body weight in poop in 2-4 hours. By morning, Mommy has received 10.8 liters of fluids. That’s 24 pounds of fluids I put into my 112-pound wife overnight. Over 20% of her body weight.

Mommy is puffy. Like, Michelin-Woman Puffy. Mommy won’t let me take pictures of her. When she’s awake.

But it’s safe to say Victoria has no more secrets. The proof is in the stains.

Anyway, Mommy will be fine. Physically.

But let’s face it. The emotional scars one can’t see… they don’t heal as quickly.

63,405

63,405

63,405.

Care to guess what that number represents? Oh, play along. Try. Guess. Don’t read on until you guess.

That’s the number of pictures that are currently on one of my computers. And that’s not all of them. Oh no. There are more.

You see, when you marry a Bland, you get pictures. The Blands take pictures. In fact, the Blands take entire vacations just to take pictures.

I married a Bland.

When Danae and I were dating, Danae stopped me from proposing to her more than once. She told me, ‘We can’t get engaged yet. We still don’t have enough pictures together.’

Has a man ever been told that before? I wager not.

So less than a month later, I bought her a camera for Christmas. Her family thought that a camera was a pretty serious Christmas gift. They had no idea. Danae knew. She understood. And we started taking pictures.

And she hasn’t stopped.

I told her we should elope. Sort of. Not really. I said, ‘You know, we should mail airline tickets to all four of our parents for some destination in the Caribbean. Then get married there. The family we still be a part of it. It will be less stress. It will be cheaper. And it will be awesome.’

‘No. I want wedding pictures.’

I wanted to get married right away. Like March. She wanted to get married seven months later, in October. So we compromised. We got married in October. ‘I want fall leaves in my wedding pictures.’

And on and on it goes. There are so many more examples I could give.

We go nowhere without cameras. Pleural.

We base cell phone decisions on cameras.

We have memory cards of varying capacity, cameras bags of varying sizes and colors and ages, lenses of varying length and quality, straps and cords and covers and filters and lions and tigers and bears and partridges in pear trees. If not, we at least have pictures of them.

Vacations are based on what the pictures will look like. Family pictures. Pictures of children. Pictures of animals. Pictures of scenery. If there was no picture, it never happened.

Oh, how I wish I still lived in the day of film. Then at least we could be on a budget. But no, we have digital. It never needs to end. Just buy another hard drive. You can take all you want. They’re free. You can take 300 of the same picture. They’re free. Don’t worry, we can just delete them later. That never happens.

I gave Danae so much grief over this.

‘Why are you taking that picture? Is that really anything we are ever going to frame? Is that really anything we will ever want to look at again? Is that really a picture nobody has ever taken before?’ ‘Are you so busy taking pictures you can’t look up and enjoy and remember the moment?’ ‘Just take it already! The kids will never all look at the same time!’

Our entire life is documented in film. Nothing has gone uncaptured.

Then Danae got sick and went to America with a diagnosis of something not being right in her head.

While she was gone, the kids and I looked at pictures. All of them. Almost. Hundreds each day.

We relived our last several family vacations. They learned about what Mommy and Daddy were like before kids. They saw the world. They saw Young Mommy and Young Daddy. They saw themselves. They remembered some old things. They learned some new things. They smiled. They laughed. They never looked away.

I don’t know the future. I don’t know which one of the six of us will leave the family first. And I don’t want to know yet, either. I secretly hope it’s me and I hope it’s a long, long time from now. But I know there will be no forgetting. There will be no struggling to conjure a memory. And I know there will be lots of laughing and smiling and reminiscing.

I will try my best to never give Danae grief again about her compulsion to take inordinate numbers of pictures.

We already have a lot of pictures.

But it is not nearly enough. We need a lifetime more.

Hit Play

Wednesday, November 16, 2016

Weird. I dreamed Danae flew to Tibet with another dude. Make of that what you will.

So the super subspecialist still doesn’t know the diagnosis, cause, treatment or prognosis of Danae’s blindness and is sending this off to another super sub specialist for a second opinion. They are convinced it’s the retina, which I suppose is good, because that means it’s not the brain, and not ischemia, stroke, aneurysm, multiple sclerosis, cancer, tumor, etc level of badness. I suppose I should be happy for that. And I am. Don’t get me wrong. Just frustrated to not have a diagnosis.

Ok, so now the older super duper subspecialist has never seen this before. Apparently, the plan is if things don’t change or get worse, there’s nothing to do. And if things do change or get worse, there’s still probably nothing to do. Grrr. Well, at least she’s not dying. Better a blind wife than a dead one, I always say. Actually, no. I don’t think I’ve ever said that before in my life. Why would I? What’s going on that I would ever need to say that? Well, anyway, I do believe better to have her blind than dead. Something tells me this won’t win me husband of the year.

Well, I go and do more surgery with Rollin. It’s actually kinda fun. I enjoy it. I should have been doing this all along the last six years. I’m just so stinking busy to try to spend time learning a little bit of basic surgery too. But at least I find it interesting. Better than the menial labor I’m usually stuck doing. Now when Danae goes totally blind, there will still be me to operate at the hospital! God help us. No, seriously. God help us all.

Juniper got her yellow fever vaccine in preparation for her return to Tchad. That’s one step closer!

Danae got a last-second appointment with the infectious disease specialist today. And the appointment with the internist got bumped up to tomorrow. That’s actually very good news.

The infectious disease and tropical medicine specialist informed Danae today that malaria prophylaxis is perfect and scolded her for not being on it. Anybody who has spent any time in Bere has witnessed that double-dose doxycycline, malarone, mefloquine, primaquine and fansidar ALL fail EVERY single year we have been here. Then the doc told us that artemisinins don’t have any resistance in Africa. I’ve had patients with fever, aches, positive malaria tests, I put them on double-dose artemether for a week, they still have fever, aches, positive malaria tests. Then I put them on quinine and they get better. Why do no specialists every believe this?

This evening the kids and I look at pictures of Mommy on the computer, something we have done most nights while she’s been gone. We look at pictures of before we were married, before we had kids, when we just had Lyol, our trips around the world to Europe and Costa Rica and Turkey and Cayman Islands and Africa, our road trips with the kids through Colorado and Utah. It’s fun. The kids love it. And they ask sooo many questions. It’s actually really cute.

The kids go to bed. Danae is waiting to get her MRA. Then she will get her labs done.

And Danae and I are still able to joke. ‘Well, at least we can now get rid of the blindfold in the bedroom, since it’ll just be redundant.’ This woman was made perfect just for me.

(Full disclosure: There never really was a blindfold in the bedroom, not that it’s any of your business.)




Thursday, November 17, 2016

I dreamed we moved back next to our old house in Wilbraham, Massachusetts, getting in late and then going to friends’ house for dinner and games. When we got back, it was snowing and our house was broken into. Then we took the extended family to Winter Park, Colorado, which had developed into a big city with double decker busses and we got lost from each other and… weird.

Well, we’re still awaiting test results. Danae is still not authorized by the General Conference to return to Tchad, which is still annoying, but I still appreciate they want to protect us. All in all, the GC is a decent employer.

Danae sees the internal medicine doctor. A whole bunch of ophthalmologists and retinal specialists believe the problem is the retina. They just don’t know what. I’m not sure what we think the internist will find. But whatever. More blood work done.

Took the kids to the river again! It was really fun. Too stressful to watch three little kids by myself, so I make them all wear lifejackets, which they don’t like, but I tell them is an absolute non-negotiable prerequisite to going to the river. And it rained while we were there!!! With thunder and everything. Addison still has an irrational fear of thunder, so we packed up and drove back early, picking up some Tchadians on the way. They were happy to get out of the rain and have a chauffeur service drop them off at their door!

It’s bedtime now and still raining, super strange for November. And usually a romantic thing, but alas… I miss my wife.




Friday, November 18, 2016

Last night I was dead asleep by nine with the sound of rain on the tin roof. So peaceful.

Now I’m up by five every morning. Less peaceful.

The ‘choo choo’ of my phone tells me I have a text message. I’m already awake. I look at the clock. 4:59. Yup, by five every day.

The text message reads: ‘I might have an aneurysm. It sounds like I do.”

Exhale. Now inhale. Hold it. Now exhale. Now just keep on repeating that for the rest of your life. Inhale. Exhale. Crap. Inhale. Exhale. What is going on? Inhale. Exhale. How do you respond to THAT? Inhale Exhale.

5:00. I write back: ‘OK’.

I’m evidently wordy this morning.

OK? This is not OK. Maybe ‘OK’ wasn’t top on the list of best responses. Why did I just write that? Seriously? What is going on? I thought we ruled this out already.

MRA shows a 1.5mm aneurysm versus infundibulum. Infundibulum. If ever there was a radiology word… infundibulum. 1.5mm. That’s small. Like, really small. As in the size of a… thing that’s really small. Can neurosurgery even clip or coil that, or just observe? Can that even be observed in Tchad? What should I do now? Carry a hand-drill with me everywhere I go so I can drill a Burr hole into her skull in case her aneurysm explodes? Like on trips and hikes and things? 1.5mm. Those are too small to explode, right? Maybe just leak a little.

Danae goes on, radiology recommends getting a CT Angiogram. Her ophthalmologist doesn’t think the aneurysm is causing the blindness, but some other ophthalmologists we’re in touch with definitely do, as well as a neurosurgeon who’s willing to operate on it. We did the MRA specifically for the possibility of aneurysm, and now it looks like there is one, so…

Wait. What? We’re having brain surgery now? I seriously thought we were in the clear when I went to bed last night. The MRA was supposed to be normal, like the MRI, then we’d be done with this. The MRA may have underestimated the aneurysm? It may be more than 1.5mm?

Sheesh. Danae’s freaking out. Now I’m freaking out. I finally got a diagnosis, sort of, that leaves me a living wife, albeit one who risks losing the other ¾ of her vision, but living at least, and now she has an aneurysm. Oh calm down. Lots of people have aneurysms. 1.5mm is nothing.

Well, we still joke. I remind her syphilis is a major cause of aneurysms. She reminds me those are often not in the brain. We joke about how cheaply you can buy a second wife here in Tchad. I joke that I want a fifth kid now because we’ve been apart for so long, I’m missing out on seeing Juniper grow up. (It’s a joke. We’re done having kids.) Danae sends me a picture of her making a kissy-guppy face. I tell her the kissy-guppy face is going to look awful strange when her aneurysm blows and she has a facial droop. We joke about switching roles and how soon I’ll be the one in the operating room saving lives and she’ll be the one drooling on the couch at home.

We decide to go ahead and get the CTA radiology recommends.

The kids and I are still looking at our pictures. Juniper posing with bonsai juniper trees. Juniper eating her first birthday cake in America without us. It’s beginning to feel like two separate family leading separate lives, oceans apart. It’s not a good feeling.

I tell Danae about the information I’m finding on aneurysms. Up to 3.6% of Americans have aneurysms. An anterior communicating artery aneurysm could impinge on those optic nerves in the right spot to cause her symptoms. Risk factors include obesity, alcohol, cocaine, syphilis. Sounds like Danae is at high risk, then. I point out to Danae that ‘Aneurysms of the ACA cause psychopathology and frontal lobe pathology. So yeah, we should definitely get the CTA.’

I’m now obsessed with reading everything in the house about aneurysms, just as I read everything I could about White Dot Syndrome a few days ago. And just as I was reading everything I could about Multiple Sclerosis before that. Now every time she has a headache, I’ll be wondering…

‘So do you want me there for your surgery? Hopefully you can suck mashed potatoes post-op through a straw for Thanksgiving.’ I know how she loves mashed potatoes.

Her labs come back negative, everything normal. HIV, CMP, RPR (no syphilis after all, whew!), thyroid, auto-immune, CBC, ESR, etc. I still wish they had ordered CRP, folate, B1, B3, B6, B9, B12, ace lysozyme, quantiferon gold. I know it’s overkill, but it’s my wife!

The CTA is scheduled now for… NOW!!! She got a last-second slot and heads over. The rest of her schedule now comes through. Danae will see her neuro-ophthalmologist and her retinal specialist before the CTA.

At 4:26, I’m rummaging through the storage room looking for some surgical supplies and texting Danae. She’s texting back, trying to help me find them.

At 4:42, I get a text: ‘A little dizzy, feel a little flushed, I’m probably just freaking out.’

Whatever, Danae has ice in her veins. I’m the emotional one. She’s joking again. I write back to joke, but she’s not having it this time. Oh boy. Talk to me, Baby. Silence.

At 4:55: ‘I think I just had an anxiety attack.’

I run down a list of alternatives with her. Malaria, fever, sweating, chills, nausea, shortness of breath, ectopic pregnancy? Seems like anxiety attack. But she never had one before. There’s no EKG at the ophthalmologist’s, unsurprisingly, but her vital signs are normal. Wish we had a pregnancy test.

‘Is there a defibrillator in their office and somebody who knows how to use it? You know… in case… your heart… like… stops… and stuff… or whatever.’ How do you ask your doctor-wife that? How much more surreal can the last two weeks have been? In retrospect, asking that question might not have been good for her anxiety. She didn’t have a panic attack when we first met, or our first kiss, or when we started dating, or when we first said ‘I love you’, or when I proposed, or when we got married… Should I be offended that now she’s having a panic attack, but not then? Or maybe flattered that she was just so sure about me? Either way, she doesn’t respond for over an hour.

The CTA is now done. The preliminary read is no aneurysm. At least nothing big enough to need to be dealt with right away.

Danae’s neuro-ophthalmologist just left for vacation, but leaves Danae’s records for her, as well as a prescription for steroids. I presume not to just get her buff. She also leaves behind a diagnosis of AZOOR, or Acute Zonal Occult Outer Retinopathy. So I guess that’s her diagnosis for the moment. Some argue it’s one of the White Dot Syndromes. It kinda seems to be a leftover diagnosis of grab bag mishmash for people that don’t fit into other diagnoses. But it sounds accurate. This is Acute. It is Zonal. It is Occult, for all we can tell. It is Outer. And it is a Retinopathy, or so it seems.

So there it is. There are no more tests to do. Nobody left to consult.

AZOOR. Sometimes it gets better. Sometimes it progresses to cellular death of the retina. Sometimes it progresses to complete blindness. Not a whole lot is known about it. I certainly never learned anything about it in medical school.

We joke that Danae has Ocular Fibromyalgia. It seems similarly nebulous.

I guess we’ll just rebook tickets for Sunday and get Danae home by Monday night. I trust there will be no more roller-coaster for a long time. These last two weeks have been enough up and down as it is.




Sabbath, November 19, 2016

Happy Sabbath! Well, we’re still joking about going blind and having panic attacks. Well, I am. Danae is fine with the blindness jokes, and she has plenty of her own. But she’s not joking about the panic attacks. She really had a sense of doom there for an hour or two.

‘Just so you know, I got out my old eye patch this morning in anticipation of your return. I’ve always had a pirate fantasy.’ ‘I figure I can put in 10-20 years and then get a trade-in.’ ‘You know my next wife will be uglier.’

‘HA! Cause you’ll be old, Olen!’

‘I am old already. But she’s four years younger than I am, so don’t worry about me.’ ‘You don’t need to rush home anymore. I haven’t finished watching the sitcoms you don’t find funny.’ ‘Now’s your last chance to get knocked up before menopause. Pull your IUD.’

I don’t know if there’s another woman in the world who can play it so cool and unassuming. Or, let’s be honest, who can put up with me.

I take the kids to river again. This is getting to be routine, like walking the camel.

Today is good.




Sunday and Monday, November 20 and 21, 2016

I AM SO HAPPY!

Everywhere I look, I see Danae. Several times, somebody walks in, and I’m so sure it’s her, only to turn and see it’s somebody else. Any other day, I’d be mad or sad about it. But not today. She’s on her way home.

No diagnosis. No cause. No treatment. No prognosis. No problem. She’s alive and she’s coming home.

I drive up early to Kelo to meet her, all three kids in tow. I get gas. I refill the hemorrhaging brake fluid. I’m still early. Nothing can get me down.

The bus comes. She gets off.

My life was on pause for the last two weeks. She was gone. I didn’t live.

She’s back. Inhale. Exhale. My heart beats again. I smile again.

Hit play.

No News

Sabbath, November 12, 2017

Well, today was pretty much spent explaining to people what White Dot Syndrome is. Except I have no clue what it is. Oh, and as church was starting, they asked Rollin to preach and me to translate. Sure.

Spent the afternoon playing with the kids.

Juniper got discharged home!!! (With $700 worth of vaccines. Ouch. We have been spoiled utterly rotten by our pediatrician who is SOOOO kind and understanding, always helping us out with vaccines.)



Sunday, November 13, 2017

Still nothing of news.

Danae is off spending money buying stuff for her return trip. Still all on very good faith she will be able to return soon.



Monday, November 14, 2017

Well, today we got an appointment scheduled with an internal medicine doctor. Which is interesting. Danae has seen a neuro-ophthalmologist and three retinal specialists, in addition to the colleagues they consulted. All of them think the problem is the retina. So remind me again what an internist is going to find? Well, whatever. Nevermind. I suppose I should just be happy they are being so thorough.

Danae and I chat about what lab tests and imagining and whatever else should be done. We come up with an extensive list of labs.

I scrub in to surgery with Rollin with the goal that after a few months I might be capable of doing the simplest of surgeries. Hey, if Danae is going to go blind, somebody needs to be able to work.

And Danae and I continue joking. Really, truly, the most inappropriate jokes. Drool, adult diapers, future spouses… it’s all fair game. It’s how we process and deal. And it’s what makes her perfect for me. God, please let her remain perfect for me for a long, long time.



Tuesday, November 15, 2017

Today Danae saw the Super Duper Retinal Subspecialist. Danae was a little discouraged looking around their waiting room and seeing all the talking phones, talking watches, talking everything. All the gadgets she’ll need when she goes completely blind. They did some fancy tests that apparently can only by done in a couple of places in the area. In fact, it took the specialist and her technician all day long to complete the testing. It was an electroretinogram, kinda like the electroencephalogram things they do attaching all the electrodes to a person’s head to monitor for seizure activity. And while it sounds cool, it also sounds like torture to me. They prop your eye open by inserting a contact lens that holds it open and smear gel on your eye and, well, anyway, I don’t get it entirely, but ophthalmologists are smart folks and retinal specialists are even smarter, so I trust them.

They found the cells on her retina aren’t firing appropriately. The rods, which sense low light, seem to fire. But the cones, which see color in bright light, aren’t firing in the sick part of her retina. So that’s why she can’t see squat in bright light toward the nasal side of her right eye. So it’s just another confirmation that it’s not the scary stuff behind the retina, like the brain and the optic nerve, which could be damaged by multiple sclerosis or strokes or tumors or whatever else.

But there really is no solid diagnosis here. Dunno the cause. Dunno the treatment. Dunno the prognosis. It’s good to be an interesting person. But not an interesting patient. You never really want your doctor to say, ‘Cool! We have no clue what’s going on. Can I present you to all the other doctors at grand rounds?’

So Danae gets a provisional diagnosis of AZOOR. Well, which isn’t really a diagnosis. It’s kinda the leftover diagnosis mishmash grab bag for whatever they can’t figure out. Acute Zonal Occult Outer Retinopathy. There’s not much information on it. And sometimes the retinal cells end up dying permanently. Sometimes it spreads and the patient goes totally blind. And sometimes it gets better on its own. And some consider it to be part of the White Dot Syndromes that somebody diagnosed her with last week. Who knows…

The test goes late. The appointment with the internist will need to be rebooked for Friday. The MRA is scheduled for tomorrow, as is the appointment with the infectious disease and tropical medicine specialist. The GC won’t give us the clearance to rebook Danae’s ticket back to Tchad until everything is completed. They want to make sure she’s gotten the best care possible. As irritated as I am by this, I’m also very grateful my employer takes this seriously and wants the best for us. We’ve really been treated pretty well by everybody at the University of Maryland health system and the General Conference, specifically Dr Landless. But it’s clear now she won’t be coming home this week either.

And through it all, we keep on joking via text. ‘So you’re still not old enough to drive on your own?’ (Mom and Dad had been driving her to all these appointments, since her eyes get dilated.) ‘Can you read this text?’ ‘Still alive?’ ‘What did you want sung at your funeral again?’ And Danae makes fun of me for having giardia again.

And this evening I took the kids outside right before sunset and we scavenged five sticks and I found some red and white paints. We then painted the sticks white and their tips red. And then I put five kids in sunglasses and gave them the sticks and had them pose for pictures. I sent the pictures to Danae about the same time the blind cane I ordered showed up at the house. Like I said, inappropriate.

Mercy

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.

Ho Hum

Thursday, November 10, 2017

Today was Ho-Hum.

Here on the homefront, everything is fine. The three kids are actually being very well behaved, considering their mother is gone.

Juniper is still in the ICU getting IVs and having her blood phlebotomized every four hours. Her hemoglobin dropped from 12 to 6.8 and they say if it gets any lower they will transfuse her. I’ve seen kids do great here with malaria and hemoglobins of 4. I don’t know why kids anemic with malaria can do so great and with other diseases do so poorly or why adults with malaria at 4 do so poorly, but I’ve seen it thousands of times, so I’m not that worried. Anyway, the girl is a pincushion, but Danae is reporting to me that she’s starting to eat and play a bit and that the entire team taking care of her is awesome. So I’m comfortable knowing that Juniper will make a full recovery. They are still trying to parse out whether or not she also has the type of malaria that can hide out in your liver for weeks or months or years. Apparently they have sent out a whole bunch of labs which will come back… eventually.

For Danae, we’re just waiting until her exam tomorrow with another retinal specialist.

Ho-Hum.

Bad. Ish.

Wednesday, November 9, 2017

Bad. Ish.

If yesterday was Good. Ish. Today is Bad. Ish.

No, pretty much as bad as could be. Well, no, that’s not true.

‘Choo-choo!!!’

That’s the sound my phone makes when it gets a text message. Like you’re about to be run over by a train. Danae hates it, but it’s the only thing that stands a chance at getting my attention.

The three monsters in my house have been waking up every morning at 5:40 or earlier. This morning was no different. Right after that, the train barreled through my bedroom.

It’s about midnight in DC and Danae lets me know Juniper has a fever of 104 and is vomiting and lethargic. Great. Malaria. Seriously? And Danae had forgotten the quinine suppositories in Bere. She tried to get some in N’Djamena before getting on the plane but had no success. Oh, well. No problem. What are the odds Juniper would get malaria while they were away? Pretty good, apparently.

Danae has some oral medicine, but Juniper would just throw it up. Tylenol syrup stayed down. Danae thinks about giving oral medicine after the Tylenol takes effect.

Danae has an appointment with the neuro-ophthalmologist in the morning. If she takes Juniper to the ER, she will likely miss her appointment.

‘Just take her to the ER. You won’t ever regret it. Even if it all turns out to be fine. They will understand and reschedule your appointment. Nobody will blame you for canceling because you had to take your 12-month-old to the ER with a fever of 104 and malaria and vomiting and lethargy. It’s totally appropriate and what good parents do.’

And then the phone shuts down. Completely. No contact with Danae. No service whatsoever. Can’t iMessage. Can’t text. Can’t email. Can’t Whatsapp. Can’t Messenger. Can’t FaceTime. Oh yeah, can’t even go old school and call. My smoke signals blow away in the wind. My drumbeats don’t carry that far. Phone tower is apparently down. I may as well be in the middle of the Sahel. Oh wait, I am.

I try to put on my strong face and I go to the hospital for worship, but all the while I’m thinking about how Juniper celebrated her one-year birthday on an airplane without her daddy and her siblings, no matter how much the flight attendants spoiled her.

A nurse gets me during worship. He just got a really sick kid and wants to order things, but the computer system is down. I step out. Our server crashed. No, it died. The computer won’t turn on. The charger lights up, but nothing on the computer. I get another charger. Charger lights up. Computer has no lights, nobody home. I try the charger on another computer, no problem. So I grab a screwdriver and pull the hard drive from the server and swap it out with a hard drive from another computer. Now the other computer boots up as the server. Great (genuine). I take it over to the office and set it up as the server. Except now it won’t boot properly. Great (sarcastic). I take out the hard drive again and tear apart another computer. This computer has an old-school pin arrangement on the hard drive, so I can’t swap. I tear apart the original computer again to try and figure out why it’s not getting any juice. I can’t figure it out. I cannibalize a computer from the ER and put the server hard drive into that one. Success! I set it up in the office, turn it on, looks perfect. Except, it doesn’t register itself as the server. Zachri, my guru, is unreachable because the phones are down. Bother. You know what, we’re doing pen and paper today. I have other things to worry about.

The phones come back up. Zachri is a full time college student and has a test to go to. He tries to help me, but needs to run to his test.

I find out Trump won. I didn’t want him. Let’s not get into that. But needless to say I have a hard time explaining that one to my Tchadian colleagues.

I find out Danae is in the ER with Juniper. I am relieved. They are being admitted to the ICU. Juniper will have two IVs after a million pokes. (Not the nurses’ fault.) She will be on a cardiac monitor to make sure the IV quinidine doesn’t prolong her QTc and put her into Torsades (ie, stop her heart). We’d rather have IV quinine or IV Artesunate, but that’s controlled by the CDC in Atlanta and we’d rather not wait for it to be flown up. She is still vomiting and lethargic. But I feel better. Once admitted, she will be getting labs drawn every four hours because she is peeing blood and they want make sure her kidneys don’t shut down and to follow her parasite load to make sure it’s decreasing.

They did a rapid malaria test, which was positive for possible multiple strains of malaria. The lab didn’t believe she had malaria because it’s so rare in America, so they repeated it. Same thing. They are sending it out for a PCR. This is Juniper’s fifth bout of malaria since we got back in July.

I suspect they have her enrolled in some research study. They are at the University of Maryland, which has their own malaria department. We should be charging them to care for her, since it’s kinda hard to find too many pediatric malaria cases in Maryland!

One of my parents will stay with Juniper and one will accompany Danae. Danae sees the neuro-ophthalmologist. She gets her MRI report. Clean. No evidence of multiple sclerosis or optic neuritis or tumor or cancer or aneurysm or stroke. That’s good. As physicians, sometimes you know a little too much of what your diagnosis COULD be. We knew it could be bad. This MRI report is a huge relief. They test her ocular pressure. Normal. They test her visual acuity. Normal. They test her pupils’ reaction to light. Normal. They test her visual fields. Left eye normal. Right eye, well, she clearly can’t see squat to the left of midline. Nothing.

The doctor examines her retina. Normal. She calls in a retinal specialist to examine her retina. Normal. Nothing abnormal they can find in her lens, vitreous humor (which isn’t as funny as it sounds) or retina. No cataracts. No posterior vitreous detachment. No retinal detachment.

I breathe easier knowing I’m not the worst doctor. I was gonna feel bad if I had seen a normal retinal exam and then they found an abnormality.

Then my chest tightens again remembering I still don’t know what’s wrong with my wife.

No explanation for why she’s half blind in one eye. They have no evidence for it, but they still think it’s the retina, despite both of them finding it normal on exam. So they ask Danae to go see another retinal specialist for some fancier testing on Friday, two days away.

I guess the day ends a lot better than it started. No multiple sclerosis or stroke or cancer or any reason to have a surgery.

(And to top it off, Adrian helps me figure out how to set up the new computer to function as the server and our electronic medical record is back up by 9pm.)

But in the sickest of ways, I’m almost disappointed. Here I had spent the last three days researching all of Wikipedia and all my medical and emergency textbooks reading everything I could on ophthalmology and neurology. I had kinda made peace with the idea that Danae was gonna have some horrific incurable disease and I had resolved in my heart I was going to be the best, most loyal husband ever. I’d start working out so I could life her onto and off of the toilet. We’d start eating healthy. I’d clean house and cook. I’d go to work and make money. When she had good spells, we’d travel the world and go hiking and enjoy ourselves and our family. I was really gonna be awesome at this. And to think that Danae would go and be healthy and steal this opportunity from me. You know, sometimes that girl can be so dang selfish.

Then I remembered that much better spouses than I have gone down this road before and failed.

Yeah, maybe I’ll just thank God Danae seems to be marginally healthy at the moment.

Juniper is in the ICU. Danae has no evidence of life-threatening illness. I suppose today wasn’t horrible. It started out just about as bad as could be, but we finally caught the break we needed. I can still call it Bad. Ish.