Bad, bad blogger

Oops.  Is it May already?

In one way it feels like we've been home for only a couple of weeks and in other ways it feels like we never left.  (Except for the fact that Nate and the boys are thousands of miles away. That definitely feels weird.)

I haven't written lately because I really haven't known what to say.  It's just been day-in and day-out kinda stuff here in Canada.  From nursing visits, to visiting family and friends, doing laundry etc.

A week or so ago, Kylie, Teddy and I went north to Muskoka to pick up our truck.  We were absolutely astonished when friends up there pooled their money and did a bunch of work on it.  From new brakes and tires to a new exhaust system, our big Suburban got a new lease on life.  We are so very grateful!

We stayed with Nate's cousins, Tim and Karla and had a great time together.  The weather was amazing so we went to the park and played around outside.  Below is Kylie and her cousin, Pyper, four-wheeling on their property.  Isn't hard to believe she's our "sick" child??

We left on a Friday morning and drove home "the back way" - a beautiful (and long) trip through farm country and along the lake.  We stopped at a cute store and took a moment to stretch and sit in this massive Muskoka chair.  (Don't worry Nate, I didn't buy a thing!)

Kylie has been doing really well.  She's very active, riding bikes, climbing trees and getting into trouble.  The PICC line has gone pretty well too, considering how active she is.  Last week she got her IV tube caught in her bike chain and shredded it.  Whoops.  But she understands how it all works so she quickly shut off the pump in her little back pack so not to waste the meds.  Then she ran inside (thinking it was rather funny) to shock her Granny.  I was out at the drug store picking up meds and got a nice panicky call on my cell phone.  Oh, Kylie!

Time for a PICC line dressing change

Two weeks ago we met with the Infectious Disease doctor.  Oh, how I wish you all could meet this woman.  She's a tall Italian woman who commands respect.  And she deserves it.  She totally knows what she's talking about and doesn't candy coat a single thing.  We had been concerned about the cost of Kylie's meds and whether or not OHIP would continue to cover them.  I don't know if I mentioned this before but we calculated the cost of her antibiotics alone for a year and they came to the nice tidy sum of $82,000.  No, that is not a typo.  Eighty-two thousand dollars!  Oh my.  Our ID Doc assured us that these would be covered and if somebody tried to stop that coverage she "would write a letter and they would listen to her."  (I'm certain they would too!)

She explained to us (again) the seriousness of Kylie's condition but was pleased with her progress.  Perhaps we won't need a year of antibiotics after all.  There are three keys to Kylie's return to health.  She needs to have a good steady SED rate (blood test), she needs to have a repeat MRI to determine whether or not the bone is regenerating, and she needs to be looking/feeling good clinically (meaning her ankle is healing, no redness or swelling, drainage etc.).  They will do a round of these tests in August and let us know then how we're doing.  It would be amazing if we could be done with this PICC line in less than a year!

Then she turned to Teddy, and due to the fact that he lived in Africa and was diagnosed with malaria, the poor little guy had to be tested for malaria and for Dengue Fever.  He wasn't happy with being poked.

Finally, she turned to me.  And not because I'm unwell.  She had a few things to say to me about our life in Africa, particularly our stupid choices of putting children on motorcycles and generally living in Africa with small children and did I know the risks, and that we have 8000 percent greater chance of dying there than here and what was I even thinking when we allowed our children to receive medical care there?

I didn't know whether to laugh or cry.  I decided to smirk - it's kinda in between.  She finally stopped the interrogation, Purell-ed her hands for the 8th time and left.  I gathered my things, walked out with the kids and met my mom in the waiting room.  The first thing I said to her was: "I feel like I've just been spanked!"  It's true!!

All in all, I considered it a good visit.  Teddy does NOT have malaria or Dengue Fever (though it sounds like such fun to have - the name alone is freaky!).  The bad news is that she wants to see the WHOLE family when we get back, line us up like criminals, poke us with needles to see what souvenirs we brought back and then put us all over her knee for even thinking about an African adventure.  (I canNOT wait for Nate to meet her -- I might pull out the video camera for that one!!)

Truly, though, this doctor is amazing and I do love her.  She is super duper smart.  She is actually very compassionate and passionate about what she does.  And without her, we'd be up the creek.

In the past week or so, Kylie has gotten very weary of wearing her big air cast boot.  Especially when the weather was very warm and she was hot and sweaty and running around.  Here's what Kylie's line up of shoes looks like at the door:

Only left feet!

This morning we had an appointment with her surgeon, Dr. Cashin.  Here's Kylie patiently waiting in the treatment room.  The big question today was:  Will she be able to ditch the boot or NOT??

The big ugly beast.  The air cast, not her, silly!

And it was a good news kinda day!  Kylie is done with the air cast!!  She didn't bring a right shoe to wear home, so she wore the boot for the last time.  She and Dr. C both look quite pleased!

We celebrated with a sprinkle donut from Tim Hortons.  We're classy girls.

We skyped with Nate and the boys last night and it was bitter-sweet to see them.  I leave this Saturday to fly back with the work team going from our church.  We leave Saturday morning from Toronto and land in Togo on Sunday at noon.  Then we'll head to Tsiko to stay the night and leave for Mango early Monday morning.  So ONE WEEK TODAY I will see Nate and the boys!!  Yay!

Please pray for Kylie and Teddy while I'm gone.  It's going to be hard for them to know that I get to go back, say goodbye, be there with our own work team and see their daddy and brothers.  I sure hope the two weeks goes quickly for them.

We land back in Canada on June 1 and have rented a house for the time being until we decide/figure out/God shows us what and where and how and when.  This living in the "wait" period is not so much fun but we're still trusting.  And we're glad that Kylie is doing so well.  It will be so so great to have all seven of us in the same country, under one roof.  

And before I sign off, you need to see this beautiful picture that our team-mate took of Howard. Isn't he gorgeous now?? 

Our beautiful bird.

Thanks for your patience with us.  Thanks for your continued prayers.  I'll post from Togo and let you know how things go.

Ten Things

FIVE THINGS I MISS ABOUT AFRICA:

5.  Clothes that dry on the line in less than 15 minutes!

At least that was how it was when I left during the dry season, now that it's coming into rainy season it can two or three days depending on how wet and humid it is.

4. The Two-Handed Wave.

There's nothing like driving out the gate at the hospital or zipping through town and getting the Togolese-Two-Handed-Wave, even from perfect strangers.  It just makes you feel like everyone is just waiting to become friends with you and they are genuinely glad you drove past.

3. Life on the Compound

I really miss the craziness, the busyness and the never-a-dull-moment life on the hospital compound.  There's always something going on, someone popping by, or some crazy adventure (from discovering rotting meat in freezers to cracking open a safe...)

2.  My Friends

I miss my new friends -the missionaries on our team and the Togolese friends we made.  It stinks that they're there and I'm here!

1.  The Obvious One!

Nate and the boys!!  I miss my better half and the three boys with him.

FIVE THINGS I LOVE ABOUT CANADA:

5.  Grocery Stores.

I love them.  I love the options and variety. It's something I took for granted for sure!

4.  The Weather.

I know it's been fairly miserable weather since I've gotten home to Canada, but it's nice to experience seasons.  In Africa, it's either hot and wet OR it's hot and dry.  So things like snow and sleet, hail and rain, sunny days, cloudy days, warm, cold, freezing, fresh, or smokin' hot.  It's so nice to have the changes of season.

3. Water.

It is absolutely amazing to turn on a tap and drink the water.  It still catches me off guard even though I've been home for almost 2 months now.  Today I was making supper and it just amazed me that I could turn on the tap and use what came out.  This is a gift, plain and simple.

2. My Church

Oh how I appreciate my church family, now more than ever.  They have been helpful, encouraging, supportive, and down right kind. And there's nothing like standing in a Sunday morning service having the entire congregation belt out the Doxology in four part harmony! Amazing.

1.  The Obvious One.

Family and dear friends.  Man, I love these people.  I praise God for the people He has placed in my life as family and friends. I have NO idea what I would do without them.

Meanwhile, Back at the Ranch

Last night I was laying awake, thinking about how I haven't posted in a while and what on earth I had to say in a post.  There isn't a whole lot exciting going on here, but here's a quick update on what we're up to:

In Africa....

Ethan had his surgery a week and a bit ago.  They removed three of the four screws and all went well.  He was pretty happy that Dr. K gave him the screws to keep.  For the surgery, he had a spinal anesthetic, and unfortunately something went a little wrong and he was leaking out spinal fluid - which means really bad headaches.  The poor guy was only pain-free when he was flat on his back.  From what other people have said, it can be really painful -- kind of like your brain has dried out because all the fluid around it has leaked out.  I don't know if Ethan's was THAT bad, but I know it took a few days before he was feeling better.  (Remember that I'm getting most of my info from a 14 year old boy or his father either by text or crackly phone call...)
Thankfully, he is doing much better and as Nate puts it, "he's back in the saddle."

The hospital project continues to go forward.  Dale Davis is back now on site, running the project and in a few weeks the Project Manager, Ted Weinburg, will be back in Mango.  This is the man who really inspired Nate to consider coming to Togo way back in January of 2012.   Nate will only get to work with Ted for two weeks before we leave, which is kinda funny.  Ted and Diane left just before we arrived in August 2012, and now we'll be with him for 2 weeks before we leave.

The other boys are doing well too.  Jack is loving going to school with the Dekryger family and Nolan just loves livin' in Africa.  They do miss their momma though.  (And I miss them like crazy.)

And back in Canada...

Kylie is doing really well on her meds.  She carries her little backpack with her wherever she goes.  The meds run through her PICC line IV 24 hours a day.  She carries a little pump (which she aptly named Squirt), her bag of meds and a little cooler pack in her back pack.  The pump runs at a trickle most of the time, but then does three big doses of meds three times a day.  She continues to have a funny reaction to the antibiotics so she has to have Benadryl three times a day as well.  It's a lot of medication for her ~ just pray that there are no side effects from these long term drugs.

As for Teddy, he has done so well adjusting to life here.  Wherever he goes, he likes it.  Other than some deep need for McDonald's french fries, he's doing great.

And me.  I'm doing well.  I miss my husband and the other boys, but realize that we only have a few more weeks before we're all back together again.  And I kinda want to make it clear that it isn't that Nate doesn't want to come home.  He isn't choosing his job over me.  I've asked him to stay so that I can come back with the team (from our church that is heading over to work) and say goodbye to our friends there.  He's being very kind in waiting for me to come there, to help pack, to say goodbye, to have some "closure."  I am very grateful for his patience and his compassion for my need to do those things.  He's a keeper.

As for you.  Our friends, our family, those of you we don't know in person but read this blog.  You have been very kind.

Before we even left for Togo, I did a lot of reading on what they call "re-entry" - returning to your home culture after seeing a different one and how it can be a real struggle.  The books suggested that we might be angry at our North American consumerism and materialism, they suggested that we might find our friends and family disinterested in our life in Africa, and that we might not really get a chance to talk about it.

Nothing could be further from the truth.

We have such good friends and family.  You have been kind and generous.  You have asked questions, really good questions, and you have listened to the answers. You have laughed with me and cried with me.  You have not judged, you have not yawned (except when I kept you up too late), and you have been genuine in your interest, concern and love for us. You know who you are!  And I cannot thank you enough.

I think it would be much harder to process what we've been through if no one had been interested.  I think there would have been way more tears and emotion if you hadn't asked.  But by letting me talk about it, ponder your questions, and come up with an answer, it has helped process and deal with the craziness of the last eight months.

Thank you very very much.  Thank you for asking and listening, for praying and encouraging, for reading about our lives and being genuinely interested.  You are all very good friends.  I think we'll keep you!

And slowly, as we figure out what it is that we've learned, we'll post it.  Some things are already coming to light. We know that we have been very privileged to live what we have lived and to share it with you.

In Other News...

I told you all about what is happening in Canada, now for a quick update on what's happening in Africa.

Nate and Ethan went down to the Tsiko hospital today so that tomorrow Ethan could have a small surgery to remove the screws in his leg.  For now, they only want to take out the screws because three of them go right through the growth plate in his femur.  Friday he'll have that surgery and then he and Nate will head north again on Saturday.  Please pray for them as they travel and for the surgery as well.

Currently the docs don't believe that Ethan will ever have to have the rod removed so for now the plan is to leave it as is. 

Thank you, thank you, for continuing to pray for our family through all of this.  It truly is hard to be on opposite sides of the ocean with kids having crazy procedures and surgeries done while you're not there.  But God is good and you guys are praying because we are hanging in there...keep the prayers comin'.  We still need them!!

Here's a photo from Ethan and Nolan's safari trip to Benin.  You can tell that Ethan is really suffering as he jumps off the waterfall.

Thanks to Remigers and Drakes for taking our boys with them on this trip!

Freedom!!

We finally made it out of the hospital!!  Hip, hip, hooray for us. We went in on Friday, March 23rd for "day surgery" and then they told us she would have to spend one night in the hospital just to keep on top of her pain meds.  One night turned into twelve and we finally got discharged on Tuesday, April 2nd.

The reason we were incarcerated hospitalized for so long was because we had to wait for a PICC line.  This fun little medical procedure means that Kylie has an internal IV site.  That way the medicine can run up a tube inside her vein to her heart.  Her meds are really tough on veins and so she needs them to bypass the small veins and head right to the big one at the top of her heart that is way tougher.  At least that's what I understand.

Tuesday at noon they started to prep her for her procedure.  Once the nurses told the doc how tough Kylie was (she had still been counting IV sites, and this last PICC line site was number 25!), they decided she did not need to be sedated.  She was a little nervous about having to be fully awake for the procedure but she did great.

Here she is with a special cream on her arms (then wrapped in plastic wrap) that will numb her arms for the "poke."  Still our Smiley Kylie.

 

I got to go into the room with her until she was settled and on the table, but then they made me leave.  So here she is post-procedure.  Lookin' a little unimpressed with me.

 

We were able to go home that same afternoon and a home care nurse arrive that evening to help us get her set up at home.  Here's where the PICC bandage and line looks like:

Before the nurse arrived, we got a delivery of medical supplies to maintain her line, clean her site, clean the incision on her foot and a gazillion other things.  Here we are looking at our bag of loot and wondering how much training it will require to understand it all!

Confusion abounds!

And here she is -- sick and unwell girl.  Yes, that is her - riding her bike with her aircast and her little back pack that carries her meds, her IV line coming out, her little medical pump (which she named Squirty) and an ice pack to keep the meds nice and cool.  

She is a super trooper.

We are so very thankful to be out of the hospital and sleeping in real beds.  I stayed all twelve nights with Kylie in hospital on a little fold out chair thing and I was VERY happy when I got to crawl into a real bed on Tuesday night.  

One morning last week, I woke up and the nurse told me that though we had been in hospital for five days already, no one had placed the actual order for a PICC line for her. I became rather grumpy.  And so did Kylie.  We wondered how long we would have to stay there for! We decided to list things we were thankful for to try to counteract the grumpiness in our room when God gave us both a huge amount of perspective.  The night before, while we were sleeping, the nurses had admitted a little girl into the bed beside Kylie. We didn't find out why she was there until mid-morning in the middle of our grumpiness:   she had had her leg amputated. And that was just the kick in the pants Kylie and I needed to realize that no matter when we got outta there, we could wait because she would WALK out of the hospital with two feet.  

Thank You, Lord!

On another note, we'd like to share with you just ONE MORE MIRACLE!  Once we got home and settled, the pharmacy came to the door with all of Kylie's very very expensive medications.  Just before they came I had received a phone call that they would be arriving right to our door.  I asked the lady how I was supposed to pay for them when they showed up.  She replied that I didn't have to pay for them - THEY WERE COMPLETELY COVERED!!  Amazing, isn't it??  I don't know how long they are covered for, perhaps the entire year but either way, it is incredible.  Even the nurses were telling me how expensive vancomycin is and wondered how we would pay for it all.  God is indeed VERY good.

And a couple of final pictures.  Some people have continued to ask about our owl, Howard.  Here are few pics of him just before we returned to Canada.  He is so much cuter!

 Turns out that Howard has learned to use his wings and flew out of our carport one Sunday.  The good news is he still considers it home and comes home every day to sleep on the exposed rafters or sit on the roof.

 

Owl baby in a basket -- isn't he so adorable??

 

And finally, a little update on what the heck we're doing.  Nate and the boys are going to stay in Togo until June. Mid-May I am going to fly back to help pack and say goodbye/see ya later to our friends and teammates and then return with Nate and the boys.  And that's the plan -- for now.  We'll keep you posted on how things truly pan out.  

Thanks for praying!

What the Dickens?

Week 2 back home has been interesting one.  This is going to be a pretty long post because there is a lot to cover, so hang with me.

Last Friday was Kylie's surgery date.  On the morning of, we got a call from the doc's office saying that they were ahead of schedule (as if the snow wasn't enough of a clue, I knew for certain I was not in Togo when I heard the words "ahead of schedule"!).  They were waiting for US!  Imagine, docs waiting for patients??

We left right away for the hospital and when we got there, we registered and then were zoomed through the paper work, taking Kylie's vitals and getting ready for surgery. 

Here we are in the little surgical waiting room:

And here we are gowned and ready to rock and roll about 3 minutes later.  These guys waste no time.

Before we went off to the OR, two of our pastors and my mom and my sister came in with us to pray.  Above photo is our little group who stood to pray for Kylie.  So awesome.

The hospital has a program where parents can go right into the OR until the child is "out" so I walked with Kylie right into the OR.  The surgeon was a little concerned that since I was in all her procedures in Togo that I might want to stay for the whole thing.  I assured her that I was NOT interested in watching them operate on my child!!  Kylie was so brave.

Here we are, ready to roll!

 Another clue that told me that I was no longer in Africa was when they asked me to refrain from taking photos in the OR.  So, no nasty pics of them opening her foot up.  But I quickly snapped one in recovery when the nurse wasn't looking.  Here's our sleepy head.  Surgery - done and done!

 

While Kylie was getting operated on, we had a little group in the waiting room.  Here's Nate's mom and my mom and below is my sis and Nate's sis.  It was a family affair.  Thanks to Nate's dad, our 2 pastors, and Bill for hanging out with us while we waited.

 

 

The surgeon came out to talk with me after she was finished and said that everything went well.  They were able to get out some of the nastiness in Kylie's heel bone and were hoping to culture some of the bacteria so they could find out what we were dealing with.  We thought we'd be able to go home that night but the plan changed -- don't they so often do that on us?  We were moved to the children's ward so that Kylie could get IV antibiotics until we could see the infectious disease doctor.  

She slept well Friday night (I stayed with her in the hospital) and on Saturday morning, they removed the dressings.  Beware - nasty pic below - but not nearly so nasty as some of the others I've posted.

You can see the surgeon's initials on her foot here.  Just so they get the right one!

Her wound looked good and they had her up and walking with a little walker and an air cast by Saturday afternoon.  She was doing great! Walking around, watching some TV in her bed, eating hospital food that she deemed 'delicious'!

We found out that Kylie needed to see the Infectious Disease doc (herein known as ID Dr.) but that we couldn't/wouldn't see her til Monday.  So our hospital stay was dragging out.  The surgeon wanted the ID Dr. to see her so they could make decisions about what kind of meds, how long etc.  Most of the docs who came in the meantime thought we were looking at 3-6 weeks of meds and then we'd be back to Africa.

Monday afternoon, ID Dr. enters our lives.  And blows us away.

Disclaimer:  This next part is the very dumbed-down version of what I understand this brilliant woman said.  And believe me she said A LOT.   She even began her explanation going as far back as World War 2, so there was a lot of info coming into my rather non-medical brain.

ID Dr. went through all Kylie's medical history from December to now with us and then asked what we thought might happen.  I told her the 6 week scenario.  Her next words were, "Okay, then what I'm gonna say next is gonna blow your mind."

Lovely.

She explained that the original infection in Kylie's ankle was indeed a staph infection.  It was the nasty kind that tries to kill you.  It was treated and we thought we were totally on the path to recovery. We knew back in January that this particular kind of infection is what they call MRSA (I can't recall the true interpretation of this acronym but here's what it means to me:  Medically Resistant to Scads of Antibiotics).  Meaning that the only med that will fix it is the big guns. Vancomycin.

If you recall our Tsiko days, we used Vanco until we cleaned out the whole country.  Then we moved to a different med.  The ID Dr. told us that they cultured what came out of Kylie's foot last Friday and turns out it is a completely different strain of staph.  In fact it's two different strains that are entirely new to Kylie.  So somewhere along the lines of our last few months, a new kind of staph found it's way into her foot.  

This NEW staph is entirely different.  It doesn't want to kill you but it does not want to be killed.  It will look as though you've beaten it and then it will rear it's ugly head and you're back in the ring, fighting it again.

The answer then?  Kill it.  With (at least) one year of IV antibiotics.  And yes, vanco is the one. 

Basically after that, ID Dr. and I discussed the three very solid reasons why we can't do this in Africa:

1.  We might very well run out of Vanco again.

2.  When you're taking Vanco, you have to have continual blood work done in a specialized test so that you can make sure you have enough in your system to kill the bug, but not too much to fry your kidneys.

3. Vanco in a regular IV will kill your veins, so Kylie needs a pic line put in - which is an internal IV that runs from a little port on the outside of her arm, inside her veins to the big vein that leads to her heart.

And we have to do this for at least one year.  Possibly more.

This was overwhelming to say the least.

The last few things that ID Dr and I talked about were how fortunate we are that Kylie is alive, how this could have gone so very wrong and how fortunate we are that her foot is saved.  But we all know that those are miracles from the hand of God, so really, He gets the credit for all that.  (As do the docs, nurses and technicians in Tsiko that we know and LOVE who saved our daughter.)

I think we are just so naive.  So spared from the tragedy that could have been.  So covered in prayer and love and grace that this kind of news just sorta bounced off us as unbelievable.  

Our time in Togo is done?  It hasn't even sunk in.  It's disappointing.  It's heart-breaking.  It's so NOT what we had hoped for, dreamed about or imagined.

But it's our reality.  And in it all, we totally need your prayers.  There are a lot of things to figure out right now.  Decisions, discussions, changes-in-plans, and Nate and I are far, far, far apart.  

As of right now, Kylie and I are still hanging out in the hospital.  She's sorta bottom of the list of importance for a pic line because she isn't in a state of emergency.  It could be days til she gets that in.  Please pray that it's done soon so we can get home, organize home-care for her meds and begin to figure this out.

And know that we are pressed, but not crushed.  Knocked down but not destroyed. 

He is still good.

Week One!

It's been a crazy few days since we landed.  We've been to the hospital and seen the surgeon.  Kylie's had an MRI, some x-rays and blood work.  I've seen our family doc for a little amoeba friend I brought home with me.  We've been clothes shopping (thanks Nate!), grocery shopping and out for pizza.  Dinner party, birthday party, church, Bible study and the list goes on. It has been so sweet to be reunited with family and friends!

This morning we met with the surgeon.  I have to admit that last night I had a little trouble getting to sleep just thinking about what might be said to us.  Yesterday I had three different people (all in the medical profession) talk to me about the possibility of amputation and I was FLOORED!  It had never even occured to me that this was even a possibility.  And to hear it three different times was just astounding -- I thought I was going to throw up every time someone said it.  So this morning, I get up and do my little devo book and the first line is this:  Trust Me in all that will happen today.

We met with the surgeon, she showed us Kylie`s MRI images and thankfully, THANKFULLY, THANKFULLY, amputation is definitely not required. She will have surgery on Friday at noon to open the ankle, drill into the heel bone and remove all the infection that is sitting around in there causing trouble. From what our doc said, if all goes well Kylie can be out of the hospital that same day.  We just have to wait and hear about whether she`ll do IV meds after or oral meds -- at this point, that doesn`t seem like a big problem at all. 

Sigh of relief.  And now for some photos -- it`s been a while and you probably want to see some of the nonsense we`ve been up to.  For our dear beloved team mates back in Mango -- some of these are dedicated to YOU!

This is for Christine -- look at the size of these green peppers!!!

 

 

Guess what still exists in Canada...

And this is Kylie`s best I TOLD YOU SO face.  They truly exist!!

Juice CRYSTALS.  

 

I had to suffer eating this beautiful plate of grilled salmon. Sorry, Nate but I had to show you...

Dinner with great friends!