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.

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.

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.

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.

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.