Tuesday, January 3, 2017

Gangs

Motorcycle Gangs

Ever heard of Hell’s Angels? The group of motorcyclists who… well, anyway… Heard of them?

Well, we started a little motorcycle gang of our own… with your help… and here’s the story:

We’ve been here for over six years now. Some other missionaries here, mostly Jonathan and Melody Dietrich and Gary and Wendy Roberts and others still, started ‘Bush Churches’ or ‘Branch Sabbath Schools’. On any typical Sabbath morning, we would hop on a motorcycle and drive out to one of the surrounding villages and meet, sometimes under a tree, sometimes under and metal hangar, and tell Bible stories and sing and pray. And a couple of these places now have over 20 baptized members meeting each week and have built churches for their services. And one of these brand new churches is even going to their neighboring villages to have evangelistic meetings!

A few years ago, we were flush with volunteers eager to be involved in this work. We could cover all our bush churches, Delbian, Guissa, Dabgue, Bendele and Broum Toussou. So one Sabbath morning we loaded up our motorcycle and took off to have some church alone as a family. But on the way home, we stopped in the village of Nangere and threw a blanket under a mango tree next to the village foot-pump well. Kids came out in droves, as did a few adults. We told the story of the flood and taught them some songs and prayed together. They asked us to come back and tell more Bible stories the next week. And so we did. And then we started going to more villages.

On a typical Sabbath morning, we could load up the pickup and leave at 7am and go to Nangere (the village), where Olen or Danae would tell the story in French and have it translated into Nangere (the language). Then we would go to Tchible, where maybe Little John would tell the story. Then on to Kassere, where maybe Brya would tell the story. Then perhaps Regis would tell the story in Tchoua. In Guissa Goro it might be Papa’s turn. Then in Moungoulou it could be that Gomde would tell the story. Romuald and Tony and Allah and any number of other people could be along any given Sabbath to tell stories and sing and pray as well. And we could get home as late and 1 or 2pm. It wasn’t always a day of rest, but it was always fun. And the villages probably average 50-100 people each Sabbath, of which 75% are usually children.

In addition to this, these young adults accompanying us to translate and then tell the story in their own language… they ASKED if they could go out and visit with the villages three times during the week as well! Of course we said yes.

Obviously none of these kids could drive a truck, but they learned to drive motorcycles and they would take our two motorcycles out into the villages on Wednesday, Thursday and Friday, giving Bible stories each day. This is in addition to their regular school activities and going out with us every Sabbath. And any time one of the kids didn’t have time to go out into the villages during the week, the local villagers would chastise us the next Sabbath. For each kid to prepare and visit a couple villages and spend the time giving a quality Bible lesson, then get back in the dark and go to a home without electricity to study for school… it is hard, but a challenge and a responsibility they gladly welcome.

And now on Sabbath morning, so we could spend more time in each village, we have split up. Two on a motorcycle to Kassere and Tchoua. A couple to Guissa Goro and Moungoulou. And a couple to Nangere and Tchible. And sometimes we mix it up.

We have wanted to split up further and give more in-depth lessons or expand to more villages, but we are out of transport.

Or, should I say, we were…!!!

Until our amazing friends from the New Market campmeeting pitched in and helped us buy three new hogs! (Not pigs, motorcycles!!!)

They aren’t exactly Harleys, but they are great new Honda bikes, perfect for here. The day they were delivered, the young adults took them out for a joyride to test them out. Boy, were they excited!

So maybe we could call them Heaven’s Angels for the time being.

These kids are amazing. I know some worry about sending out people so young to witness, but if they don’t go, who will?!?!?!? To everybody who has questioned this, I ask them to propose another person to go in their place and tell the rudimentary stories in the Bible to entire villages who don’t know who Jesus is, let alone Adam and Eve and Noah and Abraham and Ishmael and Isaac and Jacob and Joseph and Moses and David and Daniel and and and… When they don’t have anybody as an alternative, I’m reminded of just how proud I am of these young men and women. What age do you have to be before you can read the stories from the Bible? What education or training do you need? Why should I stop these guys and girls from telling about their Jesus? Come and listen to them passionately tell the story of Salvation. Come and watch the people listening intently. Come and hear the young and old reciting dozens of memory verses despite their illiteracy.

We’ve also handed out literature, GodPods (Google them, they’re awesome!), Bibles, etc, and we will soon be buying bicycles for local evangelists also.

This is really exciting stuff and, at the end of the day, the reason we are here.

But we do need some help coming up with a new name for our motorcycle gang. What do you think? The Hardly Davidsons? Hogs and kisses? Veggie Hogs? What good ones can you come up with?

We hope you are also excited by this, and if you want to join in the effort, come on over and play! If that’s not an option, feel free to go to ahiglobal.org and look for the ‘Donate’ button. It’s tax-deductible and 100% comes to us. Just email them and let them know you are donating to ‘Bere’.

Please pray for the villages hearing the Word for the first time. And please keep these young people in your prayers. Pray they are safe on the roads, pray God gives them the wisdom and the words to speak, and pray for them as they continue their own upward growth toward the Kingdom.

Impossible

Impossible

I had the talk with Ropine’s husband a week or so ago.  I told him that I didn’t know if it was going to work this next time.  If there was someone else I could refer her to I would.  I know there is a fistula hospital in the capital, but I don’t know anyone there, and it is likely to only have visiting professionals.  As it is, all of the country hospitals have been on a strike for months now.

Ropine’s husband is such a hard worker.  They come from far away so I have given him day labor jobs to help provide money for them both to be able to stay here.  Ugh….Why am I HELPING people stay here to be a pain in my side???  It’s like I am paying to have my failures stare me right in my face!

I remember the first time I saw her this past April.  I helped her to the floor in the OR consulting area since she was so weak.  I took down her cloth that was wrapped around her bottom and tried not to gasp.  She was covered in feces and urine.  (Hey, not so different than me recently, ha ha.  Seriously it’s all about the bodily fluids here in Chad)!  When the bodily fluids don’t stay where they are supposed to be because of fistulas, then….it’s a bad, bad thing.  She is one of the worst cases I have ever seen.

I knew then and there that it would be very, very difficult to restore her health and control of her bodily fluids.

She was less than a month out from her delivery and unfortunately someone had already operated on her twice in Moundou.  But here she was.  Her vagina was like cement.  Cement with leaking urine and rectal incontinence.  I would later discover with a better exam that she had basically no urethra.  She had a sliver of urethra near the opening, but over 3-4 cm of space with nothing in between the sliver of urethral opening and the bladder.

Impossible.

I decided to do her first surgery in July, since it worked out well with our vacations and needing to wait a while after the initial damage.

July.  Ugh.  The start of my case collections for oral boards.

The start of my case collections…take 2!  (I’m an open book in case you haven’t read the last blog).  Ya, this isn’t really a good one to go on my case list.
Okay, Ropine.  Sorry, you’ll have to come back next year when I’m done with my perfect list.  One without mistakes.  One where the surgery will actually work!

This one.  This one is impossible.

I can do a simple fistula.  I can even do a hard one.  But this one.

Impossible.

I’m a pretty positive person.

But not this.

First surgery in July.  Difficult.  Bilateral huge episiotomies to even see inside.  Found the bladder edges.  Brought it forward to create a new urethra with extra vaginal and labial tissue.  Could this possibly work?

Nah, that was too much to hope for.  Leaked after a while.  Like I said.  Impossible.  

Second surgery in October.  Bilateral episiotomies again to even see inside.  Wow.  Can’t believe a lot of that new urethra tissue actually took!  Fixed some small places that didn’t quite stay together.  Maybe it’s going to take after all???

Nope.

I send them back home in November and pay for there trip to go.  I’m tired of seeing them around…every day.

They come back.  I have the talk with hubby.  I tell him it’s probably not going to work this time.  If he is willing to be patient with me, I will keep trying.  I tell him it’s impossible.  But with God all things are possible.

This is seriously impossible.  She had basically NO URETHRA!  All of that stuff we’ve done to repair her I’ve just read about in the books!  I am no expert!  There are many other people qualified in the world.  I even just read an article in the Green Journal about fistulas (finally something applicable to me!).  It talks about when to refer them out.  I think this one would definitely qualify as needing a reference!  I just don’t trust anyone else here!

Hubby decides to stay and wants me to keep trying.  (Of course he does!  He has a job—I’m paying him for my misery!)

Wednesday I actually had 2 vesico vaginal fistula repairs (which is odd because I only do about 10-15 per year).  I started with the ‘easy’ one.  Turns out it wasn’t so easy, but it wasn’t that complicated either.  Was so thankful!

Then Dad and I repaired a poor old lady’s foot that had been bitten almost in two by a donkey.  What can I say?  Hazards of Chad!

Next was Ropine.  Uggh….I was dreading her so much!  You know, you almost look forward to the surgery that you ‘know’ is going to work.  Where you can say with almost 100% certainty that it’s going to work God willing.  This was not that type of surgery.  This was more like, do I even dare try again?  I feel like a failure already.  Every day I walk into work I see her husband watering the flowers…Failure.

Today God made the impossible become possible.  The surgery went really well.  She had two small fistulas (½ cm) just under her urethral opening. It’s a very delicate place given that tissue is all grafted from her vagina and labia from before.

Please, please keep Ropine in your prayers.  Pray the recovery to this surgery works and that the tissue heals well and solid.  They are such a sweet couple.  And many other husbands would have left her by now here in Chad.

Update: She’s now postop day 2 and doing well.  Continued prayers coveted.  

Update-ier Update: She leaked again from two tiny holes, which have been closed again now (a big no no to do so soon after the last surgery), but I just couldn’t help myself.  So please keep praying for her.

Update-ierest Update 1/1/17: Well poo.  That lasted 3 days.  She’s leaking urine again.  Will have to wait another 6 weeks from now to do her again.  Do not know why the urine will not just all go out the foley.  The fistulas are so small but leak so much even with the foley!

On the bright side, the other fistula girl done on the same day is doing great and dry.  

Friday, December 9, 2016

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.

Thursday, December 8, 2016

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.

Sunday, December 4, 2016

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.

Saturday, December 3, 2016

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.

Friday, December 2, 2016

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.

Thursday, December 1, 2016

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.

Wednesday, November 30, 2016

Good. Ish.

Tuesday, November 8, 2016

Today was Good. Today was Peace. And Worry. And Serenity. And Acceptance. And Denial. And Panic. But mostly Peace. Peace that it’s out of my hands. To an extent. From now until diagnosis is out of my hand. And then after that, a tiny percent is in my hands.

Best case scenarios.

Worst case scenarios. What do they mean? What do they mean for us? What do they mean for our mission? What the heck is our mission? And where?

Worst case scenarios. Do we need to leave? Can we do the things we always wanted? Does it alter our plans? How? Is it time to make a bucket list? Is it time to change priorities? Is it time to ‘put things in perspective,’ whatever that means? Do we stay because that’s where we find the most ‘meaning’? Do we stay to set an example for our children? Do we leave for health? Do we leave to accomplish things in our lives? Does money matter? Do we make a list and schedule and agenda of things we want to do while we have good health?

Is this just a blessing in disguise to show us we need to live now as if tomorrow isn’t guaranteed?

So many question. All unanswered.

As I write, Danae’s head is in an MRI.

Tomorrow we will have answers. We hope.

But for tonight, we have done all we can. And for the moment, it is all out of our hands. They’re in His. And so I’m at peace.

Tonight is Good. Ish.

Tuesday, November 29, 2016

Transit

Monday, November 7, 2017

Overnight I realized I was letting go of the last thing I held dear.

I gave Zane up when he seized in my arms and went apneic, blue, despite my strongest medical efforts to treat him. Nothing. I promised You if You saved Zane, You could have him. And then Zane took a breath.

I gave Lyol up when he disappeared suddenly for ten minutes at the river. We turned our backs and he was gone. We ran the banks screaming his name at the tops of our lungs and dove as deep and as long as our lungs would allow, scouring the muddy waters for his body. Nothing. I promised You if Lyol was still alive, You could have him. And then Lyol was found hiding with Sheba, the dog.

I gave Addison up when she was completely lethargic and dehydrated for days, pooping copious amounts of blood and refusing to eat anything, even fruit and ice cream. She couldn’t do anything but moan that her tummy hurt and cry because she was pooping in her pants. She stopped peeing. She stopped drinking. She stopped moaning. She stopped crying. She stopped. Nothing. I promised You if Addison made it to Europe alive, You could have her. And then she stopped being sick.

I gave Juniper up when she had malaria at two months of age. So tiny. So fragile. So tired. Such a small arm to have an IV going into it. So tiring to watch the quinine drip into her veins every minute for days on end, waiting for a change. Nothing. I promised You if Juniper survived malaria, You could have her. And then she recovered.

I had nothing left to give. Or so I thought.

I had my wife. And it was killing me. I was so stressed thinking of all the things I needed to do to take care of her, realizing there was no way I could do it.

And then it hit me.

I don’t need to.

I don’t need to, because You will anyway. She was never mine. Nor were my kids, for that matter.

You made my wife. You created her. You formed her in her mother’s womb. You loved her before I ever met her.

But I have learned something. I have grown. I will make You a promise. She is Yours. This promise is contingent on nothing. She is Yours. I trust You.

And knowing this, today was a good day.

I was frustrated, sure, that today of all days the internet wasn’t working most of the day and I couldn’t talk to Danae. But it picked up and we chatted before her flight to Ethiopia. And then we chatted while she was in Ethiopia awaiting her flight to America.

We started joking again. Joking about the most inappropriate things as only we can. The potentially lethal diseases. The chronically debilitating diseases. Blindness. Dementia. Inability to care for one’s self. Taking bets on whether she goes nutso from MS or I go whackadoo with Alzheimer’s first. We joke about racing scooters and changing diapers and misfiring frontal lobes and drool.

The diseases that cause the most sorrow. We joke about them. Not because we aren’t worried. Terrified, even. Not because we are brave or courageous. Not because we are naive. Not because we are immune. Not because we think You will prevent anything bad from ever happening to us.

But because we know, come what may, we will always have each other. And we will always have You. You are our guarantee. Our only guarantee. And our only need.

Thanks. Danae is over the ocean right now, ready for an MRI tomorrow afternoon and a visit with the neuro-ophthalmologist the morning after. With neuro and multiple sclerosis specialists at the ready, should that be the case. And treatment to soon follow, if be.

Monday, November 28, 2016

Blind

Sunday, November 6, 2017

‘But what if Mommy’s bus leaves?’

Melanoma. Glioma. Schwannoma. Meningioma. Hemangioma. Craniopharyngioma. Horrenderomas all, so far as I know.

There’s a long pause. I already know what my answer will be. I’m just not certain my voice won’t betray me. I stare out the passenger window instead of straight ahead down the road where I’m driving. I hope for a glimpse. But she’s already on and the bus windows are so tinted. The worst ideas are playing out in my head.

‘That’s the idea, sweetheart. The bus is going to take Mommy to N’Djamena.”

‘And then to America?’

Stroke. Aneurysm. Carotid dissection. Internal carotid dissection. Ophthalmic artery dissection. Thrombotic event. Embolic event. Central retinal artery occlusion. Amaurosis fugax. Anterior ischemic optic neuropathy. Giant cell arteritis. Posterior ischemic optic neuropathy. Lupus.

My chest tightens.

‘That’s right, honey. Then Mommy is getting on the plane to America.’

‘And then she’s coming back next week?’

Retinal detachment. Posterior vitreous detachment. Macular ischemia. Cataract. Ocular migraine.

I swallow hard. The frigging lump in my throat just won’t go down.

‘Yes. Then she’s coming back next week.’

‘Daddy, Mommy is going to see the doctor. She’s sick.’

Optic neuritis. Multiple sclerosis. Pseudotumor cerebrii. Multiple sclerosis.

My histrionic and painfully imaginative and overly-educated mind flies through all the worst case scenarios. She will come back, right? I will see her again, right? No, no. That’s ridiculous to even question. Put that thought out of your foolish mind right now. It’s the right decision to stay here for the hospital while she travels alone with the baby, right? Right?

‘Mommy is just a little sick.’

Multiple sclerosis. That sticks in my mind.

Please let this be an ocular migraine. Please let my fundoscopic exam be off. Let it be her retina or vitreous. Or a partial cataract. I could maybe even be ok with stroke, aneurysm, dissection, even some of the ‘-omas’. Those things can be treated early and prevented from becoming life-threatening. Provided she makes it safely to America. And provided it’s not some of the other stuff.

I’m not an ophthalmologist. This differential diagnosis alone is way over my head. I’m so out of my league here. I’m sure there must be other possibilities I haven’t thought of. And I’m sure I should be able to rule out most of this stuff with what I know already.

What I know. What do I know?

Sabbath morning, Danae came back from the hospital and told me something was up with her eyes. She couldn’t see right. Cover your right eye. Follow my finger. Perfect. Cover you left eye. Follow my finger outside. Great. Follow my finger inside. Earth to Danae. Follow my finger. What do you mean you can’t? It’s right here in front of your face. You can’t see it? You aren’t serious. Promise? You really can’t see it? You’re not joking?

We established that Danae had lost the medial field of vision in her right eye for an undetermined length of time. Besides a recent cold, no other symptoms whatsoever. Being good missionaries, we went to church. In church, I wrote an email to our ophthalmologist friend until Danae caught me not paying attention to the service. I sent it and then put my phone down to continue being a good missionary.

After church, I took her up to the hospital. I ultrasounded her eyeball, but not with an ideal probe and not as I was taught in residency. I couldn’t find any retinal detachment. I did a fundoscopic exam. Looked normal to me. Rollin did a fundoscopic exam too. Normal.

So since her fundoscopic exam is normal and her vision in her left eye is normal, that means there’s a problem somewhere between the retina and the optic chiasm. Can’t really be posterior to the optic chiasm. And less likely to be a mass in the chiasm itself.

Optic neuritis continues to rise in my brain. And the most common cause of optic neuritis is multiple sclerosis. Multiple sclerosis. And the most common initial symptom in multiple sclerosis is optic neuritis. Multiple sclerosis. Demyelination of the nerves in the brain and the spinal cord. And the optic nerve is particularly susceptible. Multiple Fricking Sclerosis.

We decided it would be best for Danae to go back to America to see a specialist. We made the call to the medical evacuation insurance company. They agreed Danae needed to be seen. ASAP. In fact, they insisted it was urgent enough that she needed to go to Nairobi to get care.

We politely declined the insurance and bought tickets for Danae and Juniper to head back to America. Juniper. Our youngest. She’s turning one year old in two days. That means I will miss my last child’s first birthday. Suck. I will stay here with the other three kids. Rollin could handle the hospital by himself. But it would be hard. Tirmon is gone, so Rollin would be all alone. He’s done it before, but it’s no fun.

We bought tickets a hair too late to catch Saturday night’s bus for today’s flight out. So we could sleep and then drop her off at the bus today. She will fly out tomorrow.

Danae popped an aspirin and we decided against IV steroids, since we didn’t have good methylprednisolone and we didn’t have a diagnosis. We stayed up until 3am packing, hanging out, stressing, joking. I showed her all the presents I had gotten her in America and had been hiding all around the bedroom from her. Granola, granola bars, water enhancer, bridle for her camel, pesto packets, food coloring, lotion, razors so she doesn’t wound my legs in bed, stolen Taco Bell hot sauce packets, the Christmas presents I got for the kids, as well as their Paw Patrol Kleenex and fruit gummies and gummy vitamins.

We slept for a couple hours before waking up. We drug our feet. Sure, we will give everybody haircuts today. Any excuse to not leave.

The kids and I drive the two hours home from dropping Mommy off. The kids go inside. I go to the hospital. Work is a nice distraction. It always has been. We were apart when Danae had her first miscarriage. Sitting home alone, I was left to ruminate on the disappointment. The hospital has always been a bizarre and ironic refuge from personal illness in that way. Somehow dealing with people sicker than you are is cathartic. I round on pediatrics. I take a small break to look at the wall for a few seconds. I doubt anybody even noticed. Just a moment where I couldn’t look anybody in the eye. Work is finished. Nowhere to go but home. Empty home. Full of three kids. But empty.

I get home. I eat. I take the three kids, two dogs and a camel out for a walk. I come home, feed the kids, get them showered and into bed. I pray with them. We pray for Mommy. I cut the prayer short. My kids don’t need the stress of Mommy gone and Daddy breaking down. A quick ‘I love you’ and I’m out of the room. And then I’m left to myself. I’m used to being alone. Danae is often still in the hospital when the kids go to bed. But this time it’s different. She won’t be coming home tonight.

It’s not the being apart. It’s not the aloneness. I just spent three weeks in America. We were apart. We missed each other. But we were fine. I came home. I was home for four days. And then she got sick. Just a little sick. Just a tiny piece of her vision missing. But it could signify so much more. So I sent her back. And now we are apart. And now it’s different. Because one of us is sick. Just a little sick.

Oh, God. Please let her be just a little sick.

During the next several days, I will try to post a blog each day about Danae’s ordeal.

Thursday, November 24, 2016

Extreme Empathy

Extreme Empathy

Please do not scroll down if you do not do well with medical pictures….

(Story/photos posted with permission)

“Stop it kids!”  Stop it I say!”  The middle aged Fulani lady yelled to her teenagers who were fighting out in rural Chad.  Now this wasn’t just any fighting.  Apparently this was nomad extreme fighting, MMA-style.

This is no ordinary mother.  When they would not stop, she got all up into their business.  She ran over in the MIDDLE of their fighting to pull them apart.

Somehow in the midst of this, someone shot an arrow.  And she was the one who got shot.

Our doctor friends who were visiting Moundou texted and asked what they should do.  Since they were visiting, they preferred to send her to us since she was quite complicated.  The government hospital in Moundou was on strike too.

It happened about a month ago on Saturday.  A nurse came to my door at 2 am.  I couldn’t believe the patient had actually come!  She had gotten a taxi to come to our little mission hospital about 2-3 hours away.  I got dressed and went to see this amazing woman in person.

Yep, diagnosis given.  Arrow to the eye!  You don’t need to be an eye doctor to see that!  I looked hard, but couldn’t get a billable ICD-10 for this.

Someone had done an X-ray in Moundou, but they had forgotten it.  The visiting doctor in Moundou had told us it looked like there were hooks on the end of the arrow.  Great.  This is going to be really hard to get out.  To pull it back out would rip apart anything in its way that it did not damage on the way in! But to push it through, like you do with fish hooks, would damage vessels in the interior of the brain.  Not to mention, how would you get it through the skull on the other side?  And I’m pretty sure I recall a lecture in medical school where a professor informed us it’s considered poor care to push an arrow through somebody’s brain on purpose.

This arrow had already been in for a full day.  The thoughts of cerebral infection filled my mind.  How is this woman possibly going to live?

I counseled the family we needed to remove the arrow.  It would be difficult, and we weren’t even sure she would live.  She most certainly wouldn’t be able to see out of the eye.  And she had a high chance of losing her eyeball.  I made her NPO.

Before church, Dad and I went in to remove her arrow.  She was very courageous.  After a little while, we finally found our vice grip pliers.  After giving Ketamine for anesthesia, I removed the dressing that someone had put on, and we could see the eye to a fuller extent.  You could see pus already coming out from the side of the eye.

Well, it had to come out.  And there wasn’t anyone going to do it but us.  So we all braced in the operating room, while my Dad applied the vice grip pliers.  We held her head and Dad pulled.

Well, that came out easier than expected!  It came out in one pull.  I quickly applied pressure over the eye and surrounding skull.  After a couple of minutes I removed the compress to take a look.  She wasn’t hemorraging!  At least on the outside!



We praised God and hospitalized her!  Her family was overjoyed she was alive!  She was continued on IV antibiotics and given her tetanus vaccine.

Since she lived so far away in a very remote setting, she ended up staying for several weeks.  Her infection cleared up, but she was left with no vision in her right eye.

I would go see her and have her cover her left eye and joke I was testing her vision.  “Am I white or black?” I would say in French, and someone would translate into Arabic.  She would laugh and we became good friends.  I felt badly for her, but happy she survived.

Often patients are anxious to get back home.  It’s a normal thing to want.  One day I asked her if she was ready to go.  She replied she would stay a year if we told her to!  She just wanted to have her health!

It’s normal for doctors to have some empathy for their patients.  I remember learning about sympathy versus empathy in medical school.  I guess I hadn’t really given it much thought before.  Sympathy is the feeling of pity or sorry for someone else’s misfortune.  Empathy is the ability to understand and share the feelings of another.  It sort of sounds the same, right?

Well, there’s no better way to understand someone else’s feelings of sickness than by having the same sickness.

I have empathy for my patients because I have delivered babies of my own.  I have empathy for my Chadian mothers because my children also have malaria.  I haven’t developed much empathy for the huge hydroceles that I assist with when in a pinch… hmmm…

But wouldn’t you know it… two Saturday mornings ago while walking to the hospital, I developed a vision issue too!  I could tell that my vision was not quite right.  On the way home from the hospital things still seemed off.  I did a small visual test on myself and called Olen outside to recheck my vision.  We decided then and there… I needed to get back to America.

Sunday, November 13, 2016

Pay It Forward

I was freezing.  I was all wrapped up, but still I was just so cold! 

Back up.  We weren’t in Chad.  We were on our vacation in America this past year and had gone to see Zoo Lights.  Gamma, Olen and I and all 4 kids had trekked out among the huge throngs to see the amazing Christmas lights at the National Zoo.  

We had a nice baby snow outfit that Juniper was wrapped in.  She was warm, but still people felt the need to give condescending looks that we brought our baby out here in the cold.  Nevertheless, we enjoyed the time out watching the brightly colored lights.  

One problem.  Juniper was hungry and screaming.  I lagged back in the crowd and told Olen I’d call him after I was done feeding the little girl.  I found a spot on the rock wall and put the one blanket over the girl so she could breastfeed.  

One problem.  I didn’t have my phone.  And Olen didn’t see where I had sat down.  

It was cold.  I was cold (Juniper was NOT cold).  I was feeling lost from my family.  I waited a long time on that rock wall hoping Olen would come back and find where I was seated.  

I stopped a few people to borrow their phone, but I couldn’t remember Olen’s phone number.  

I must have looked pretty pathetic with a baby out in the cold because one lady I stopped insisted that I take her wool shawl.  (I may have been crying a little too because I was frustrated and hate being “lost.”).  I must say that that red and black wool shawl did make my shoulders feel a little less numb from the cold.  

…..she just said to pay it forward some day.  



This little baby was freezing.  She was all wrapped up, but still she was just so cold!  

She was born too early.  She was 1.2 Kg (about 2 pounds) when she was born.  Little babies born this early just don’t have enough fat and thermoregulations to keep them warm.  They simply die of cold.  Even when it’s hot outside sometimes, they die of being cold.  

….so I payed it forward.  

I took the same red and black wool shawl given to me by that sweet lady in the freezing cold in America and wrapped up this tiny bundle of joy.  

We were given a wonderful incubator this year from AMALF (an adventist french organization) that came on a container.  Thank you AMALF!  (along with many other good things!) But, like a lot of things in Chad, they lack maintenance, and I am incapable to get the thing working again!  It worked for a week and was great during that time.  

So for now, it’s back to our old method of keeping babies warm.  Kangaroo style baby and mommy time.  Warm water bottles.  Warm hats and blankets.

Our precious tiny baby girl was hospitalized for several weeks.  I kept her on prophylactic IV antibiotics given through the tiniest of veins.  

 We gave her mommy’s milk with a syringe in her mouth as she sucked on our finger.  

She eventually got strong enough to suck directly from her mommy.  

And everyday I would see her wrapped in that beautiful red and black wool blanket.  She was getting bigger and stronger.




Today I discharged her (actually it was last week that I wrote this blog).  She’s still so small and fragile, but was doing well enough with her mommy that we weren’t offering anything more by keeping her here.  

I will never forget that woman and her friend who were kind enough to let me use their phone on that cold night last year.  And then forced me to take their shawl too.  It was not just that it kept me warm.  It touched my heart too.

You don’t have to be a missionary across the world like us, you can help those in need in a crowded first world city too.  


Somehow though, it’s more fun to pay it forward here in Chad. 


Saturday, August 20, 2016

Dragons Slayed

I guess I kinda owe everybody an update on our situation and my dragon-slaying wife.

Thursday morning, the Prefet sent word via the district medical officer that he would be calling his brother, the prime minister, and asking him to call the American ambassador, requesting we be removed from Tchad.

When my wife heard this, she went back on her strike. But she felt bad for the ladies on the maternity ward, so she went and did rounds on her 16 patients. But she kinda then felt bad for the post-op patients, so she rounded on those 12 patients too. Well, and there were two elective surgeries that where waiting, so she did those too. Well, and she was presented four more patients needing elective surgery, so she lined them up for Friday.

Then today, she rounded on maternity and surgery again and then goes and performs five surgeries and consults a million more, getting home about 6pm on her strike day. (Her last patient came from Cameroon.)

Should you ever need a labor union leader... She is not the one you want.  Her compassion, in the face of the most torrid and unfounded accusations of racism, thievery, incompetence and deceit, awes and humbles me.

Thursday, after hearing the Prefet would have the ambassador throw us out, I went rapidly to the hospital to grab my computer. Trying to make a quick escape home, I was stopped by a young man running after me.

He came from twelve hours away, taking multiple busses over dirt roads. I had been so mad, I didn't go to the hospital the day before. He had been waiting for me at the hospital for three days. I asked him what he wanted. He said, "Nothing." I've been in Tchad six years, everybody always wants something.

He had come to see me a few weeks prior. I had written some medicines for him and sent him home. He went the twelve hours home. Then he decided to come back and see me again. His chest pain, his cough, his fatigue... It was all gone. He was gaining weight again. I asked him why he had come back. He said he simply wanted to say, "Thank you." He had tried all the other hospitals, but this was the one, I was the doctor, that had cured him.

I left him and headed home again. Once again, before I could reach the safety of my front gate (we live on the hospital compound), a nurse from the ER got me. He had a fist full of medical booklets. He had patients he wanted me to see.

The first was a Muslim lady with her head covered. She had a bellyache. Literally. I wrote for some medicines. She and her husband told me they had spent twelve hours on multiple busses to come see me. They too had waited a few days to see me. The lady uncovered her head so I could see her eyes. They were welling up. Her husband began to speak. They had heard about the Prefet's threats. They wanted to personally apologize for the words of another and beg me not to leave Tchad. Who would take care of them? They thanked me repeatedly.

The next patient was the same story. Another twelve hour trip on multiple busses. Sorry about the grief the authorities are giving you. Please don't leave.

When I finished in the ER, the nurse from medicine caught me and begged me to see her patients. I have never said no to a nurse asking me to see a patient, so I suppose I shouldn't start now.

I rounded on medicine. Patient after patient grabbed my hand and thanked me and asked me to stay.

By the time rounds were finished, all I could do was to nod my head and grunt, afraid anything more and my voice might betray my emotions.

Later last night, my church elder came to my door to beg me not to leave. While speaking with the church elder, Danae went up to check on a patient. (She's the world's worst striker.)

Danae came back and said a nurse took her in private and begged her to stay. That wasn't surprising. What's surprising is it was the nurse we thought didn't even like us!

So while we remain threatened by silly people for silly and unfounded things, we have been sent encouragers. We have been told that we matter. We have been told we make a difference. We have been told we help. We have been told we are wanted.

And while we don't work for human accolades... It helps.

So we don't know yet what will become of us... But it's Friday night here, which is our Sabbath, our day of rest. Our day to put all our troubles behind us.

Why worry about tomorrow, what I will eat or what I will drink? Sufficient were the troubles of today.

For those of you who are the praying type, feel free to keep us in your prayers as things play out this next week.