Thursday, July 31, 2014

Thursday Morning Update and Prayer Requests

Just a very quick update for all those who are praying along with us and following Maggie's story:

We have an MRI in about 2 hours (10:30a).  We are hoping that it shows the miraculous intervention of God and that the lesions on her brain have disappeared.  We'll certainly take shrinkage.  We are praying against further complications.  Afterwards, we anticipate transfer to the rehab floor.

She is moving her left side even better and appears to have some right-side vision recovery.  Ongoing recovery would be incredible.  Her personality is back too - and that makes us smile often.

So, bullet form for all my engineer friends:

1.  Good results on the MRI

2.  Ongoing recovery on left side and right-side vision

3.  We get to the rehab floor today and can begin the intensive therapy that will bring God's full recovery to her little body.

4.  No bad stuff.

Thanks for all who are praying and standing with us.

Tuesday, July 29, 2014

Tuesday Morning Update and Prayer Requests

I haven't had much to say in the last day or two, so rather than bore anyone with ramblings it seemed better just to keep quiet.  The Minion is pretty happily enduring hospital life.  We spend a lot of time on the mat on the floor hanging out, reading books, playing with toys, and so forth.  She's hitting some sort of schedule that is a good thing.

And I slept last night.  I mean, really slept.  It was my turn at the hospital and I still slept hard.  It's the first time in a month or more of good, hard sleep.  I have slept the same number of hours in the past month, but this was quality sleep.

It's the little things.

No seriously.  It's the little things.  I woke up this morning and simply said thanks for a good night's sleep to the One who didn't sleep while I did.  Gratitude.  Little things.  Amen.

Some prayer requests for the morning:

1.  Ongoing recovery of left-side and vision.

2.  No new problems.  No steps backward.

3.  We have an MRI scheduled for tomorrow that will involve her being sedated again.  Our experience has been about a 24-hour process of climbing out of that.  So, please pray that we get good news from the MRI and that the Minion is able to come out of the anesthesia and quickly come back to where we are now.

4.  We are ready to get to the rehab floor.  They are unable to do the monitoring she needs after the anesthesia so we had to wait until after the MRI.  You can pray for a smooth transition to there and great progress once we get there.

These are not roller coaster days, thankfully.  Thank you for standing with us still.  We are looking forward to the future.


Saturday, July 26, 2014

Saturday Evening Update: 4 Days in a Row

It's our fourth good day in a row.  The Bear and I landed four weeks ago yesterday after speaking at a camp when all this craziness started.  Since, we haven't had two good days strung together yet.  Now we have four.

Four days.

Four days of playing.  Four days of smiling.  Four days of snuggling.  Four days of therapy.  Four days of encouragement.  Four days of rhythm.  Four days of progress.  Four days of personality.  Four days of speaking.  Four days of cognition.  Four days of improvement.

Four days.

I don't remember being so happy about any particular four consecutive days in my forty years.

I know we're not entitled to a fifth.  The fear of all of that lurks like some specter in a Scooby-Doo episode, though without the neat little bow of unmasking the ghost or exclamations of "Zoikes!"  Having watched so much here, I know we're not entitled to a fifth day.

But man, I'm hoping for one.

Here are prayer requests for Saturday evening and Sunday:

1.  A fifth day.  Enough said.

2.  Bed space on the rehab floor for Monday.  Let the intense road to recovery begin.

3.  Lord willing, I will preach tomorrow morning.  I hope it's full of joy and gravity.

4.  We have the Wonder Twins back, while the Bear is still with Nana (formerly known as She Who Must Be Obeyed) and will be back early this week.  You can pray we all transition back to something that resembles our family before June 27th.

5.  We have had incredible care while here at TCH.  We also have had some great conversations about life, adoption, Maggie, faith, and so on.  For her sake and His, I pray her story goes far and wide - even wider than it's gone and with greater impact for the sake of His Kingdom than we will know this side of Kingdom Come.

Thanks for standing with us.



Friday, July 25, 2014

Friday Morning Update and Prayer Requests

If you haven't yet read my wife's reflections on yesterday, she has posted a redwood among saplings.  You can find it her:  Lenses.  Yes, it's that good.  Yes, you should read it right now.

Outside of two noisy nurses, it was a quiet evening with the Minion.  We had friends come by and visit.  I particularly love watching those who treat her as they would their own daughter.  She slept pretty well and all her numbers have stayed where they are supposed to be.  Yesterday was the second good day in a row, something we haven't had in this 4-week adventure.

Four weeks.

Four weeks ago, the Bear and I were flying home from a camp where I was preaching.  We were joking about delayed flights and delayed baggage and rejoicing in the cool things God had done at camp and the people we had seen.  Little did we know we'd have all of this out in front of us.

Picking up on my wife's post, my exhortation to one and all (ME most of all) is to take a moment and be grateful for what is because you never know what you're flying home to and what changes to life that might bring.  Whatever today holds, may God teach us to number our days so that we may gain a heart of wisdom (Ps. 90.10).

Prayer requests for the morning:

1.  A third good day.  Three in a row.  O, let it be.

2.  No bad news today.  We're back in the PCU and typically leave after a day or two in a rush to brain surgery or some other dark place.  We don't want any of that.

3.  If we can begin to hit stride with all of this hospital time and what remains of it, that would be great.  We're still slightly out of sorts and The Big Three are still not in our possession right now.  As part of good days and no bad news, it'd be great to hit stride as a couple and parents.

4.  This one is smaller and more personal, but I'm hoping to preach Sunday.  In doing so, I want to make sure what is said puts Christ front and center and not our family, certainly not me.  His Word is the one that matters here.  On that note, our staff (and a cadre of volunteers) has been awesome.  So grateful for them.

Thanks for standing with us.

Thursday, July 24, 2014

Thursday Morning Prayer Requests and Update

There is, gloriously, not much to report overnight.  The Minion is asleep beside me, peacefully doing her thing.  The Queen even got a visit from a friend of ours from Chicago who just so happened to be down here for a medical conference.  You can the Queen's latest report here.

As I type, we just got the report from an early morning CT scan that it appears the Heparin has had no negative effects on her.  No new bleeds, no increase in any of the other lesions.  Thank you for praying with us on that.

We had such a great day yesterday, I am hoping for another.  We haven't really had two in a row.  So that'd be a great milestone.

Prayer Requests:

1.  Ongoing effectiveness for dissolving the superficial clot without causing other issues.

2.  There is talk of getting back to the intermediate care of PCU.  There are medical steps necessary to make that happen.  You can pray for those to be taken because that means we're making the right kind of progress.

3.  No bad news.  Only good news.  Like a second day of good interaction and attitude.

4.  She's gotten some personality back, some of her soul seems to be returning.  She's even snuggly at times, which is something we haven't seen in a while.  You can pray that she would be in good health and it would go well with her soul (3 John 2).

Thank you for standing with us so faithfully.



Wednesday, July 23, 2014

Dwelling Place

If you haven't read the most recent medical update in words that actually make sense, you should.  It's posted on the Queen's blog here:  Up-Down-Up-Down.

I have slept some weird places in my life.  Some of the more interesting include a shack on the side of a mountain in Ecuador, under a mosquito net in a full-size bed while someone next to me is vomiting so hard it's horizontal, and a brief nap at a train station that was interrupted when a machete fight broke out a few feet away.

And that was all on the same trip with my boy, SAG.

A little comedic memory relaxes my brain a bit, letting off some steam.  What's not funny is the stories we see around us and the people who are writing them.  We have stayed at the hospital all night, multiple nights, and encountered ugliness and hope.  We have stayed at the Ronald McDonald House a few nights, seeing cancer, despair, joy, and perseverance.  Some are inspiring.  Some are like eating too many jalapeƱos and the burn stays with you.  Some are simply nuclear in their devastation.

I read this last night and found the faith (and it's harder than it sounds) to offer a prayer:  Lord, you have been our dwelling place in all generations.

"Father, I don't want to live in a hospital.  I want to live in You.  Whatever our circumstance are or become, please help You to be Home for us" (Psalm 90.1).

I couldn't shake the thought this morning after an early morning nap and even found the faith to pray it again.  Let it be.

Prayer Requests for the Morning:

1.  That the course of treatment with the Heparin would be just enough but not too much.  We want help in dissolving the clot but not too much so that we risk a new bleed.  It's quite the dance.

2.  Complete healing.  This morning, I'm still swinging for the fences on that one.  Thanks for joining us.

3.  That the Enemy would be chased away from this situation from every angle.

4.  For us to figure out which version of imaging is next.  MRI?  CT?  ABC?  XYZPDQ?  We have a good team following us and need to reach a clear next step for the next set of pictures.  Each has its advantages and disadvantages.

5.  The Big Three would continue to hang in there.  They are such great kids.


Thanks to all who are standing with us and staying with us.

Sunday, July 20, 2014

Five Love Languages

The Queen has posted a beautifully written piece about inspiring people who have been through awful circumstances with their kiddos.  Check it out here:  Those Who Have Gone Before Me.

I can be a pretty selfish guy, the kind that has the proclivity to think everything already revolves around me and if it doesn't than it should.

I say that to say this:  I have been inspired by the selflessness of our Framily.  If you're familiar with Gary Chapman's Five Love Languages, here are examples of each...

Words of Encouragement:

We got the sweetest note from a college friend who helped me the night we got engaged.  She and her family gather to pray for Maggie every night.  I'm not sure the last time we've seen her, it may have been her wedding.  But social media has allowed us to stay in touch and they are offering prayers from the East Cost.  Wow.

Acts of Service:

I haven't thought about (or had to think about) our house or food for our kids.  People have mowed the lawn, fed the dog, checked on this and that, and lined up meals for the kiddos and whoever is keeping them.  Multiple people have cared for The Big Three like they were their own.  Some of those people are blood-related, but not all.

Quality Time:

Some people drop by just to see the Minion and us and hang about for a bit.  Sometimes they have to wait for quite a while because of something going on in the room.  One friend came by yesterday with Torchy's Tacos for lunch and waited probably 90 minutes while we got some things settled.

Physical Touch:

While not exactly what Chapman meant, caring for our physical needs is a gift.  One Framily member said he can't cook brownies (that's his wife's doing), but he can exercise his nocturnal nature at the bedside while the Queen and I sleep.  Outside of a few nights where it was medically necessary for us to be here, he has taken shifts that have let us both get 5+ hours of sleep on any given night.

Gifts:

There have been gifts show up from the most incredible places.  Friends of friends bring by stuff because they have been following the story.  Old acquaintances send words of encouragement and other gifts.  It's all been amazing - so much so that when OT and PT come by, they don't bring anything to play with because the Minion has so much at her bedside.  A beautiful quilt showed up yesterday from ladies who have been praying and following along.  Incredible.


We are well-loved and do not walk alone.  Thank you one and all, those whose examples are mentioned and those who are not mentioned.  Most of all, thank you for your prayers and persistence in them.  The barrage heaven is receiving about Maggie's life is making a difference, "not overcoming [God's] reluctance but laying hold of His willingness" (Luther).

Speaking of prayer, here are some requests for the day:

1.  She may have a secondary infection elsewhere that is causing her some pain.  Please pray for a clear diagnosis and quick treatment.

2.  Left-side return, right-side vision restoration.

3.  I had the best 45 minutes with her yesterday while the Queen went to eat dinner with the Judge.  I'd love that 45 to turn into 120 or more.

4.  No new bad anythings.

5.  Her story to make a difference in people's lives, no matter how the chapters are written or the plot twists.

Thank you one and all.

Saturday, July 19, 2014

Saturday Update and Prayer Requests and the Power of Hope

The Queen has already posted about the incredible Friday we had.  Thank you, Jesus.  Hope has the amazing ability to steel our resolve and boost our energy for the task at hand.  We're grateful for an injection of hope when it was much needed.

Some quick prayer requests for the morning:

1.  Ongoing recovery in her left side and right field of vision.

2.  Another good, happy, moments-of-Maggie day.  There were spots when she looked like her, not the kid who's been hospitalized for almost three weeks.

3.  No new bad news.  Nothing.  Zip.  Zilch.  Nada.  

4.  For the Big Three to know they're loved and cared for just as much as the Minion.  

5.  We got some news yesterday that one of the things we'd been looking forward to as a family is not going to happen.  We're disappointed but understand completely.  A specific prayer request on that:  we'd find the right thing to do in order to replace it and make memories as a family.

6.  For all who prayed for our VBS at church, some 300 kids were involved and 22 of them trusted Christ.  Awesome.  Please continue to pray for our church.  We have a big meeting this weekend about bring a children's pastor - someone I'm ridiculously excited about having on board.  You can ask for God's leadership to be clear.

Lastly, before all the insanity, I used to chase the Minion around the house saying, "I'm gonna getcha.  I'm gonna getcha.  I'm gonna getcha!"  She would run and flail and then bust into laughter.  

Well...

video

Friday, July 18, 2014

I love to watch her sleep

It's whatever time it is in the morning, still dark as night outside, and I can't help but think how much I love to watch my baby girl sleep.  After quite a day of struggle and fight, some peace comes with deeper breaths and closed eyes and a super-soft animal blanket covering legs and arms.

Peace.

Some prayer requests for the day:

1.  They are able to remove the EVD, the tube which is implanted in her head and helps drain extra fluid.  Apparently, it won't be pretty when they do.  But we're all ready for them to do it.  And if we can get that out, we are probably freed from PICU (assuming no other complications) and can move to the Progressive Care Unit (PCU).

2.  Ongoing answers to the questions that are still out there.  Are we 100% confident we have a diagnosis?  What kinds of treatment options do we pursue to fight against this happening again?

3.  No more bad news - no bleeds, no reactions, no clots, no infections, no irritation, no fussiness.  No bad news.

4.  There have been at least two families here that have done The Parade.  That's my term for it but it's horrible, terrifying to watch. The Parade is the line of people who are allowed back bedside to say goodbye.  I see that, I watch...and my sympathy for them turns into prayers and I'm scared as @#%@#$ because of where my little girl is laying right now.  I don't know names or situations, but you can pray for them too.

5.  And I'm serious about this:  please ask God's blessing upon all those who have blessed us.  We have docs, nurses, therapists, Framily near, and Framily afar that have stayed with us, watched over our kiddo, come by to check just because they care, allowed the Queen and I to walk to the cafeteria together, sat up late so we could sleep a bit, sent the kindest words of encouragement, provided food, cut our lawn, entertained The Big Three, washed and folded our underwear, and a thousand other things.  And most of all, they have stayed with us and not grown weary.  May God bless them in return - they have taken Jesus seriously when He said that it's better to give than receive.  And now may they be blessed and receive His blessings in return.

Sprint has this commercial right now about Framily - friends and family and friends-who-are-family (I only wish I was creative enough to have coined the phrase).  We don't have to have a commercial about it.  We are living it.

Thursday, July 17, 2014

What a Day

There comes a point, it seems, when people in tough situations go numb.  I'm pretty sure that experience was mine today (or yesterday, depending on when you're reading this).

We started the day out with some discomfort from not being able to eat.  The Minion had a sedated MRI, TEE (an echo of her heart, but from the inside of her throat), and the installation of a PICC line scheduled.  That all got going around 9:30 and ended around 1:00.

I was sitting in the cafeteria eating Chick-Fil-A when the call came from Neurosurgery:  "Mr. Henderson, are you nearby?  We need to speak with you."

Never. Good. News.

The news, as the Queen detailed on Facebook yesterday, was that the site of hemorrhage on the right had grown.  For those following the details, that also points to an infectious process as the cause of all the drama here.  Brain surgery #2, here we come.

But we had to wait.  And wait.  And wait.

And it didn't even make me mad.  I sat there mostly numb.  I was grateful that they were pulling a tumor out a kid's skull.  I even managed a nap in there.  That helped with the numbness.  4:00 became 5:30 became 6:00 became 7:00 which became 8:00 which became 8:30.  About 8:40 or so, she was off to have a biopsy and fluid evacuation of the right side bleed.

The same dang neurosurgeon was there again.  Wow.

They brought her straight back to her room so she did most of her recovery here.  That was stressful enough because she was having trouble with swelling and mucus in her throat from the intubation tube being there for 12+ hours.  At one point, the Queen and I found ourselves bossing the doctors around and pointing to numbers on the screen that, looking back, I'm sure they were aware of.  None of the medical professionals in the room seemed stressed.  The only stressed people were the patient and her parents, one of those more than the other.

If my daughter has surgery ever again, I don't think they want us too close when she starts coming out from anesthesia.  Maybe there's a recovery room where parents aren't given immediate access for a reason.

After an hour or so and some pain meds, things stabilized.  It's 2:00am and she's soundly asleep, breathing great and looking beautiful.

I have no idea what tomorrow holds.  But here are some prayer requests for tonight.

1.  Some good sleep for my two girls up here.  By the time most of you see this, it'll be a retro-prayer.  I only ask that you pray it anyway, knowing that God can work out the whole space-time continuum bit.

2.  Good left-side and right vision recovery.  The neurosurgeons thought that evacuating that fluid would really help the left-side recovery.  May it be.

3.  Ongoing clarity on what it all means.  The diagnosis is beginning to come into focus.  We want it laser-sharp so that we can deal with it appropriately.  We'll have to trust God for the all the implications of it, but we won't borrow tomorrow's trouble.

4.  The last day of VBS at our church.  Again, I know life is continuing outside the 180 sq.ft. that we currently occupy.  I hope all the kids and the volunteers encounter the eternal.

Thanks for praying with us.

Tuesday, July 15, 2014

Tuesday Morning Prayer Requests and Update

It's been a pretty uneventful evening and night.  Outside of some general fussiness, the Minion has been doing okay.  Not much to report on that front.  As a dad, I wonder and worry about the state of her soul in moments like these.  Will she remember any of this?  Will she always hate nurses?  Will she be glad for or hate when daddy stroked her cheek while yet another amount of blood was drawn?

Or will it all be lost in the glorious forgetfulness of being two?

Quick Prayer Requests for the Morning:

1.  No new bad news:  clots, pressures, problems, complications, infections, etc.

2.  Ongoing recovery for her left side and right vision.

3.  From a dad's heart, I'm ready to hold my girl in my arms again.  That's not possible with some of the medically necessary stuff attached to her.  I'm ready to get past that medical necessity to holding her.

4.  Ongoing rest for us and the well-being of the other three kiddos.  I miss not being together.


There's a whole lot I don't understand about most of this.  A friend and fellow-minister called last night and asked about how we were doing and expressed his gratitude for us walking through this without bitterness and with faith.

I'm sure somewhere in the grief stages when we have some more emotional space to process and it's not all adrenaline and lab coats, we will wrestle with anger.  I won't speak for the Queen, but I haven't really wondered about the "Why" question.  I just know this is the path we're on.

My friend, Brad, has written a great piece about our experience this past Sunday morning.  The verse I shared with him that I thought best described our situation and the state of my heart was Psalm 77.19:
Your path led through the sea, Your way through the mighty waters, though Your footprints were not seen.
First, I'm so grateful for the psalms because they give me language that I don't have to say what needs to be said and describe what needs to be described.

Second, it's hard enough following God when His steps are easily seen.  These days when His footprints are obscured by what we cannot control leave our faith threadbare sometimes.  But I come back to what our Student Pastor preached the first Sunday after it all happened:  "Where else are we going to go?  You alone have the words of eternal life" (from John 6).  That doesn't always feel like robust faith.  In fact, sometimes it feels like, "I don't really have any other options, so I guess I'm sticking with You."  Thankfully, mustard seed, threadbare, no-other-options faith still qualifies.

Monday, July 14, 2014

Monday Morning Update and Prayer Requests

My wife has posted a quick update here:  The Queen's Blog.

Overnight has been a very full-throated, "Meh..." (to get the full effect, say it, shrug your shoulders, and raise one eyebrow, all at the same time - it'll give you the emotion I'm trying to communicate.  What's awesome is some of you just tried that and a few more reread it two times to make sure you were getting it all down at once).

The Minion has an IV in her right leg that is apparently hurting some when medicine comes through. Medicine comes through regularly.  You get the idea.  We are trying to move all medicinal fluids through her left leg but run the risk of it getting swollen again, reversing course on her slow recovery usage, and in general not going forward.

But she's sleeping right now.  She actually looks like herself right now.

But other times, her little face scrunches and a frown creases those precious lips and tears fall.  It is heart-breaking.

But her numbers are all pretty good.  I'm looking at the monitor right now, a skill I have regretfully developed, and the inter-cranial pressure is below 5, which is normal for you and me and good for those who have had "brain insults" (hello, least favorite term ever).

So..."Meh."

Prayer Requests:

1.  Pressure stays low.  Brain recovers.  No new "insults," bleeds, seizures, or anything else that's bad.

2.  Her blood chemistry would stay where it needs to be.  Sodium, in particular, needs to be close to or above 140.

3.  Our kids would have a great time at our church's VBS this week.  It's not lost on us that the world is continuing without us.  But I am praying for our kids and our church and this week.

4.  That her story would impact lives.  We've already heard of a few.  It would be like our Father and Defender of Orphans to redeem so much pain with so much transformation in others' lives.


I'm ready to do this again...


By the way, that's the Forge "Esse Quam Videri" shirt I mentioned yesterday.

Sunday, July 13, 2014

Esse Quam Videri

I was razzed (not inappropriately, I might add) by the Queen about the Mr. Rogers nature of my last post versus her last post.  Truthfully, I was thinking about the blissful and sleeping child before me and the good morning we had.  I hadn't toured the long-term inpatient rehab floor.  I hadn't known to be so dang worried about the PVC's with her heart.

Therefore, it was a pretty good day in my neighborhood.  But no, the Queen wasn't being Eeyore.  In fact, it was almost prophetic.

The Minion had more episodes that we later determined were seizures throughout the day Saturday.  It was evident that something was wrong and a CT scan quickly brought even my blissfully ignorant outlook into a collision with medical realities I wish I didn't understand.

There was more swelling.

Maggie was put back in the PICU, neurosurgery was brought in, and they relieved some of the pressure via an inserted tube.  I'm sure the Queen can do medical justice to this.  Look for her post later.  She's trying to catch a few zzz's right now.

It was scary.

So prayer requests as I see them:

1.  We need NO pressure, pressure-related problems, new clots, new bleeds, or anything else.  

2.  We want the body to work as God intended and heal like God designed it to heal.

3.  We desire full restoration of her left side and vision.

4.  We wish that God would bless the doctors and nurses who have been so kind and the friends and family who have been amazing.  Where people have poured out, we want them to receive.


A year or so ago, I went and spoke to the Forge at Pine Cove, the leadership development program.  They gave me a super-awesome t-shirt and on the back it says, "Esse Quam Videri" which means "To be, not to seem."  When I put that t-shirt on this morning, it was a prayer for Maggie and us.  That she would actually be better, not just look better.  And that we would be people who lived out what we said was true, even when it is hard and faith is as thin as sewing thread.  

May we all be, not just seem.

Friday, July 11, 2014

Overall a pretty darn good day

Thanks to all who have prayed, visited, brought food, cared, emailed, texted, called, and loved us.  All in all, yesterday was a pretty darn good day.  It was so good, in fact, that I haven't had a chance to give any updates.

The scoop:

  • Maggie was awake a good portion of the day, alert and doing pretty well.
  • She tolerated therapy (speech, physical, and occupational) over the course of a couple of hours.
  • She ate well.
  • Her left eye seemed to be tracking more consistently.  Still a little fuzzy on the right one, it seems.
  • She took a really good nap late yesterday afternoon.  That involved me asking the nurse for a Do Not Disturb sign on the door.  No.  Really.  True story.
  • Her sodium levels have remained steady via the oral sodium doses throughout yesterday.  This means no IV fluids.  Yay!
  • She can eat basically whatever she wants and drink whatever she wants.
  • Yesterday evening, she was using her left arm a little bit - specifically resisting me when I was working with her.  She also fired her left quad and, in addition, lifted her whole left leg off the couch.  Those are both new milestones.
  • She just seems more content.


Prayer Requests:

  • As usual, a clear diagnosis.  Hematology ruled out the blood-clotting factors.  That was good news today...and still leaves us without a diagnosis.
  • Continued healing for her left side and right field of vision.
  • No heart abnormalities.  These PVC things pop up that can scare some parents of a heart baby.
  • No more "incidents," "insults," or "events."  I'm pretty sure I now hate all those words that medical professionals use to describe the life-changing experience we are living.
  • Steady levels for all the stuff they need:  sodium, potassium, and the rest of the periodic table they keep tabs on.
  • And one that qualifies as "wouldn't it be awesome" - I have been scheduled for 18+ months to speak at Pine Cove's Family Camp in a few weeks.  I know that Maggie has some inpatient rehab ahead of her.  But the Queen and I were talking about how awesome it would be to be able to get out and have a week to recoup, ALL 6 OF US.  We love Pine Cove and giving back to them, and this week could be a ministry to us as well.


Hope has an amazing ability to bring resolve and a sense of capacity.  We have had a heaping teaspoon of hope over the past couple of days.  I think the Queen and I both have a sense of resolve that we're going to get through this and a sense of capacity that God will give us what we need.

May it be, or...Amen.

Thursday, July 10, 2014

Overnight Update: Like Breathing Air

Some great things seem to be happening in our little adventure.

Yesterday afternoon, we moved from the PICU to the intermediate care unit known as PCU (Progressive Care Unit).  That means our room looks more like a hospital room and less like a holding area.  We had some sweet friends come pray with us about the spiritual side of this, however it might be related.  With the Enemy's agenda to steal, kill, and destroy (John 10.10), the Queen asked them up in order to cover our girl completely.  It was a great time of intercession.

I think the Minion had the best day to date yesterday.  She was more alert.  Her eyes were wider open.  She seemed to track to the right past her midline.  She was more vocal.  And it looked like she fired her left arm and leg a few times.  She even recognized and sang (?) along to Let it Go with our friend.  (the fact that he sang along is a different story, but he's a dad-of-gals, so that explains a lot).

There is a lot of hope in all of that.

On our honeymoon, the Queen and I went to Mexico before it became CrazyLand.  One of the things we did while there was tour the cenotes, sink holes of fresh water.  One of them was about 25-30 feet deep and while snorkeling I thought I'd just swim down and look at this cool rock formation.

That was a great idea at the time.  The problem was, I ran out of air in my lungs and then remembered that I had about 25 feet of water to navigate above me before I could breathe again.  Scary moment for me, but it felt SO good when I broke the surface and gulped air.

Yesterday, with all the hope, was like that.  Air.  Breath.  Hope.

Prayer requests for the morning:

1.  No new medical "events" or stuff like that.  Protection for her.

2.  Ongoing recovery of sight and left-side usage.

3.  She has a blood draw this morning to track down some genetics-related questions.  Drawing blood has not been easy on anybody.

4.  The genetics-related studies they are now embarking on may or may not lead to an answer as to an underlying cause.  I don't pray we have a genetic issue.  But I do pray for an answer, a clear diagnosis.

Thank you all for standing in the gap, being beside us, rejoicing with us, crying with us, praying with us.

Wednesday, July 9, 2014

A few solid places but mostly holes

My friend asked me yesterday how I was holding in there.  I won’t speak for the Queen, because she does that so eloquently by herself, but I told him I felt like a sieve – a few solid places but mostly holes.  The roller-coaster life of PICU seems to beat more out of us than we knew we had.

Prayer Requests of the Morning:

1.  The docs gave us tough news yesterday regarding Maggie’s condition and recovery possibilities.  We want to be emotionally honest enough to accept those as reality while faith-filled enough to pray to the One who defines Reality.

2.  No more clots, “events,” or other medical issues. 

3.  That we get a definitive, no-doubts-left diagnosis.  This is, hands down, the most frustrating part right now.  If we don’t know what caused it, how can we prevent it in the future?

4.  That God would pour out His goodness, kindness, mercy, generosity, and love on those who have poured out their goodness, kindness, mercy, generosity, and love on us.  I type this as a dear friend-who-is-family drives home at 3am because he wanted to let us sleep a little.  One of a thousand examples.

5.  That Maggie’s story, no matter the plot of the future chapters, would be a testimony to...
God’s love
His concern for physical and spiritual orphans
His power
The true nature of His redeemed people, the church, among a culture and narrative that is fraught with skepticism, cynicism, and defensiveness

On that note, I want to get to the place where Psalm 69.6 is a prayer, pleading that we would live faithfully so as to bolster and not upset the faith of others.  “Let not those who hope in you be put to shame through me, O Lord GOD of hosts; let not those who seek you be brought to dishonor through me, O God of Israel.”


Honestly, those moments are few and far between.  Mostly I’m living in Psalm 71.12 – “O God, be not far from me; O my God, make haste to help me!” 

Monday, July 7, 2014

Monday Morning Update and Amazement #MountainsForMaggie #PrayForMaggie

So far, we have had a pretty quiet night.  The Minion is sleeping so soundly beside me and it's wonderful.  I'd sometimes sneak into her room at night when I was going to bed and see her sleeping peacefully.  This isn't quite that, but it's close enough.

Some prayer requests for the morning:

1.  Swelling to go down in the left leg.

2.  We have a big MRI and CT scan today.  I'm not really sure how to pray for the outcome, because if they find something or don't - both have their challenges.  She will be sedated for quite some time, which is scary in so many ways.  You can certainly pray for safety and clarity.

3.  Ongoing healing and restoration of her left side and vision.

4.  I'm a little tired of the 2 steps forward and 1.5 steps back rhythm.  If that's griping, then I'll own it. But I'd sure like to take a couple of steps forward and live in that zip code for a while.


Here's the amazement part.  As I stated in an earlier post, my father-in-law the Judge gave us some space at the Marriott across the street from TCH.  It's been a place of respite and a soft bed (without disrupting other people's lives, which we did for a few days to friends-who-are-family and who continually offer).

I checked in the other day and the gal behind the counter was professional:  "Can I help you with something, sir?"

"Ma'am, the problems I'm having right now - I don't think you can help me with those.  But I do have a reservation."

Name, credit card info, etc. were exchanged.

Right before she handed me the keys, she asked very kindly and sweetly if I was sure she couldn't help with anything else.  I, in a moment of social weakness, told her that my daughter was in the hospital and unless she had a miracle tucked under her black blazer, she had rendered to me exactly what I needed - some room keys.

I leave, come back to the hospital, and then go back to the Marriott that evening.  Sitting in our room is this along with a stuffed animal (you can click on it if you can't read it):


The kindness of strangers is an amazing gift.

I walked downstairs on the hunt for her and her manager.  When I saw her, I walked up and hugged her and told her how grateful I was and how I hoped she hugged strangers.  Her GM isn't in until today, so I have a conversation coming with him next.  

Color me grateful.

Sustenance

The hospital room isn't always the easiest place to find faith.  Desperation?  Yes.  Faith?  A solid maybe-possibly-potentially.

There's been a moment or two, though, where the Bible has come alive and fueled the prayers I'm praying and others have prayed.  So, I hope this encourages people.  I promise I'm not preaching and there's another post coming this morning as an update, but typing it out helps me to process it too.


Bless our God, O peoples; let the sound of his praise be heard, who has kept our soul among the living and has not let our feet slip. For you, O God, have tested us; you have tried us as silver is tried. You brought us into the net; you laid a crushing burden on our backs; you let men ride over our heads; we went through fire and through water; yet you have brought us out to a place of abundance. (Psalm 66:8-12 ESV)


** I'm ready to get to that "brought us out" bit. Though I promise you, we are currently living in "a place of abundance" when I think about what all God has done and how our family, friends, and friends who are family have been there. Hopefully a few people hear Maggie's story and join the chorus to "Bless our God, O peoples." I can get there in this moment of calm. Not sure I could get there in some of the other moments.



Father of the fatherless and protector of widows is God in his holy habitation. God settles the solitary in a home... (Psalm 68:5-6 ESV)


** He has done this for Maggie. Enough said.



Blessed be the Lord, who daily bears us up; God is our salvation. Selah Our God is a God of salvation, and to GOD, the Lord, belong deliverances from death. (Psalm 68:19-20 ESV)


** He has done this for us. Daily bearing for daily burdens. And deliverance and from death. Amen.


Peter describes Jesus as one who, when suffering, "continued entrusting Himself to Him who judges justly" (2.23). Our suffering is not abnormal, some sort of punishment, or a reflection of a shift in the disposition of God toward us. So we can follow Jesus in this too: entrusting ourselves to Him who judges justly.

Sunday, July 6, 2014

Giving out? Yes Giving up? No

With 24-hour bedside vigils the norm these days, time is both precious and powerful.  Precious because it puts us bedside and helps us know how to best help her and advocate for her in these days. Powerful because it reminds us how precious moments really are, helping us squeeze every ounce out of every moment.  Life tends to dull us.  Catastrophe and tragedy wake us up.

Time away from the bedside is also precious and powerful.  Precious because there's so little of it.  Powerful because even a moment or two of walking or brief conversation about non-hospital-life over cake from the wedding reception you didn't go to can be a refresher that gives you enough umph to get through whatever is next.

My father-in-law, who we'll just call Judge Davy Crockett, has wanted to be here and help but not be in the way.  He finally found a way to do both, as he was kind enough to buy a few nights at the Marriott across the street from the hospital.  In addition to the staff at the Marriott doing something ridiculously thoughtful (more on that in another post), it also is a place of respite and rest.  Others had offered to help with hotels (thank you - you know who you are) but the Judge insisted.

I went over about 6:30 last night and crashed.  I was awakened at 12:45am by the Queen.  She had apparently been trying to get a hold of me because the Minion was awake and even smiled some.  I hadn't heard a phone, text message, or anything else.  She had to come physically shake me to wake me up.  Even the timer I set to wake me up I had miscalculated on in the mental fog.  Couple that with a moment yesterday when our friend was asking a question and I completely zoned out, then had to confess:  "Can you ask me that question again?  I'm pretty sure I went to the Twilight Zone there for a minute."  I suppose my body was giving out.

I felt awful that I had overslept and even more awful that I had missed Maggie's most wakeful moments to date.  The body apparently really does have a limit.  As things settle down, we will get more sleep, I know.  And we are abundantly grateful for all the folks who have offered to sit with her.  I don't doubt there will be a day when we take some of you up on that.

Prayer requests to start the morning:

1.  The nurse just mentioned potentially getting to a "real" room instead of a PICU room.  Maggie apparently is doing so well that there's at least talk of that.  It's news to me, but also seems to be incredibly encouraging that she's doing that well.

2.  Ongoing recovery with her left side.

3.  No further injury.

4.  One more day until we get the full compliment of doctors back.  In particular, I think we're really interested to hear from Infectious Disease (confirming there's no infection hiding somewhere) and Hematology (with news on what their battery of blood tests have found about her clotting factors).

5.  Ongoing and recoverable physical strength for the Queen and me.

Thanks to all.  We are sustained by His power and your prayers.  We do not give up.  I'm ready to see this face again.


Saturday, July 5, 2014

Small victories and answered prayers

It's been a fairly uneventful night.  Thank you, Father, for that.

Brief Update:

Maggie is eating applesauce and things like it.  That sure makes her tummy feel better.  Though she is getting calories through her IV, it is not the same as when your tummy is full.  She also has, it seems to me, more mobility in her left leg.  I did not personally see the movement that the Queen videoed and posted to Facebook.  So I'm comparing what I saw before I left for a few winks of sleep with what I saw tonight during feeding.  Thank you, Father, for that.

We're also moving to a private room in CVICU.  There's talk of us transferring down to PICU because of her neuro stuff.  We'll wait and see.

Our little nurse-of-the-night Chelsea has been terrific.  I came around the corner from a quick restroom break to Chelsea holding the Minion's head, stroking her cheek, and doing things that her mom would do.  It was a physical demonstration of what so many of you are doing:  cradling her, holding her as if she were your own.  Thank you.

A couple of prayer requests to start out the morning:

1.  No more injury.  No permanent damage.

2.  Clear diagnosis.

3.  Continued left side recovery.

4.  Open eyes.  The fluid they're working to draw out of her is the stuff, we think, that's keeping her eyes closed from swelling, heaviness, and general discomfort.  I want to see her eyes again, and for those eyes to work.





Friday, July 4, 2014

May their tribe increase #MountainsForMaggie #PrayForMaggie

It's the afternoon of the 4th of July.  Previous plans put us on a lake with relatives watching fireworks.  CVICU isn't the lake.

First and foremost, current prayer requests:

1.  Decreased swelling in her precious little noggin.  Today is the day we're supposed to turn the corner on that.  I'm ready to turn that corner.

2.  Wakefulness that's not upset.  I don't need an hour.  But even a few minutes of quiet or small babble would be awesome.  If she's awake, she's lit up.  It's hard on her (on multiple levels) to have all that activity to the point of wearing out.

3.  A clear diagnosis.  We are still lacking one, though we've been seen by everybody but the guy who was running the cash register at the gift shop where I bought the Queen and I some drinks.

4.  No more injuries.  And no permanent damage.

The Queen sums it up this way:  God, please bring her back.  Amen to that.  The picture I posted recently of she and I walking while we saw grandparents in Texarkana - that's the image I associate with "bring her back."  I want that again.  And that's the spiritual, involuntary vomit that comes up out of my soul when I pray.

I've seen the church and the Church be awesome.

Last night, at some ungodly hour, God was still awake and so were three brothers.  It sounds like a bar joke, but a white guy with floppy hair, a large African-American brother, and a shorter guy from the Indian subcontinent walked into a hospital room.  Their intention, denied by a medical procedure, was to pray over the Minion.  One of the guys (all were employees of TCH) had been a client of the Queen's photography ministry, and they had heard via social media, and came to pray.  The lead guy said, "We can treat in this hospital, but we can't heal.  Only Jesus does that."  So off they went, on their lunch break, to hospital chapel to pray for our little girl.  May their tribe increase.

Some of our local church folks called a prayer meeting at 2pm today.  Pics started rolling in of dozens of people gathered to pray for our little girl.  Are you kidding me?  Who does that but family?  May their tribe increase.

Our students at Youth Camp this week have a delayed bus.  I got a pic of them stopping to pray at 2pm.  Delayed buses can lead to griping.  In our students, it led to prayer.  May their tribe increase.

One of the Queen's coworkers came by last night when everything was hitting the fan.  She stayed calm, rubbed the Queen's shoulders, and was so stinking encouraging it was fuel.  May her tribe increase.

So many of you have posted on FB and Twitter about her, sharing statuses and pics and so forth.  Thanks for spreading the word so heaven is barraged.  May your tribe increase.

To our friends who created the cool little Jesus Loves Maggie graphic, thank you.  May your tribe increase.

To my northern friends who are praying from DisneyLand, thank you.  To our other friends who aren't there but are praying still.  May your tribe increase.

To my friend who showed up with liquid goodness from Sonic, thank you.  May your tribe increase.

To my Metroplex friend who offered to tell inappropriate and irreverent jokes to take my mind off things, thank you.  I'm not so sure if the world could handle an increase in your tribe.  But I wish it would increase anyway.

Our dearest mentees-turned-friends came up when it was all breaking loose too.  They just stood and prayed and didn't mind that all they got was a fist bump and a goodbye.  May their tribe increase.

And my former-workout-partner (former only because vacations and emergencies seem to be interrupting us staving off midlife), not only volunteered but actually did come and sit from 10p-3a so I could sleep a little.  I told the nurse he was my brother - different moms but the same dad.  That's true in some ways, maybe the most important ways.  For breakfast this morning, I ate his wife's chicken and dumplings she had put in the fridge of the family area last night - they were here when everything hit the fan too.  May their tribe increase.

And to the many more who stopped at 2pm to pray, thank you.  You are Aaron and Hur.  May your tribe increase.

Thursday, July 3, 2014

For Aslan and for Narnia #MountainsForMaggie

Hospital rooms at 3:49 AM are basically inhospitable places.  I find that ironic in light of the shared etymology of those words.  I've been trying to gather my thoughts to put them in form of some sort.  The Queen is doing a fabulous job on the medical front and has basically provided an update in the afternoons on her blog (4 U Ruthie).

Some points - both low and high, all for prayer (please):

1.  Her fever has been better today but seems to still linger.  What is causing it depends on who you ask.  I'm tired of the asking and would love to get on to the answering but that takes time because cultures have to grow, etc.  You can pray for a clear diagnosis of what's happening.

2.  When PT came by yesterday, it seemed she had sensory abilities in her left side.  Her response to stimuli was more than reflex.  You can pray that sensory responsiveness becomes muscular control.

3.  Her right field of vision seems not to be online.  And I think she struggles to move her eyes to the right.  This opens up a completely different can of worms - why the right side?  That is possibly related to her previous brain bleed.  Possibly.  You can pray that her vision returns, in full, with no lingering problems.

4.  She's resting peacefully at the moment.  They might need to call security if someone else comes in and says how beautiful she is and then proceeds to mess with her.  Or drops a sample of blood so that they just have to get "a little bit more."  You can pray for ongoing rest, the kind that restores.

A good number of friends have been so kind to ask also as to how the Queen and I are doing.  Thank you.

We have a junk drawer in our house that is scary and dangerous and I don't open it unless I absolutely have to in order to find something that is crucial to the moment.  I won't speak for the Queen, but that's the state of my soul right now, with my emotional life being both scary and dangerous and best-served, at least for the moment, with only-open-upon-necessity sticker on the outside.

To all of you I say what I said to our Student Pastor at church and then to another dear friend:

There's this scene at the end of The Lion, the Witch, and the Wardrobe. Peter turns and looks at the army of the White Witch. Then he turns and looks at the centaur beside him. Peter asks, "Are you with me?" "To the death," the centaur replies. 

Then Peter bellows, "For Aslan and for Narnia!" and charges the field of battle into what looks like certain and sound defeat.  They are outmatched in number and weaponry and viciousness.  

But the only reason Peter had the courage to charge is because there was some idiot (editor's note, that's a 4am term with no filter - should've said crazy person) beside him who was willing to do the same. We are Peter.  The situation is the outmatched battlefield.  You and those like you are the centaur.  At 4AM, there is precious little courage or hope. But there are people beside us. 


So...

For Aslan and for Narnia.



Wednesday, July 2, 2014

#MountainsForMaggie

The past 24 hours has been pretty brutal.  I described it to my friend Dave like this:  we're the corks, the circumstances have been the hurricane.

Just a quick bit of backstory:

Over the weekend, the Minion ran a fever and in her cute 2-year old way complained of left arm pain.  She was checked out by the docs at Texas Children's Hospital on Sunday morning and sent home:  it's viral.  Monday morning, after being home with me a couple of hours, she didn't want to walk on her left leg.  A call to the cardiology team, and she was admitted for observation and fluids.

At 4am Tuesday morning, she woke up hungry and I went to feed her and she had a significant involuntary tremor in her left arm.  The nurse was with me and saw it.  She called the cardiology resident who saw it.  She called the cardiology fellow who saw it.  But it went away.

Questions abounded:  blood chemistry because of the high amount of fluids being IV'd into her?  Something else?

The Queen and I did the kid switch at about 9:30 Tuesday morning.  The Big Three, who don't catch cramps during big games and of whom I couldn't be prouder for hanging in there, got to see the Minion and then we headed home.  15 minutes into our 35 minute drive home, the dearest friend of the Queen called me to say Minion had a stroke and was left-side flaccid.

Cue the freaking hurricane.

Bottom line of the 4:02 AM moment:  we've ruled out some pretty bad stuff but have some big questions still on the table.

God has moved mountains once for her.  Indeed, we need another geological relocation project.

1.  For no further brain bleeds - she has apparently had two, separated by a period of weeks.

2.  For recovery on her left side.

3.  For questions to become answers.

4.  For The Big Three to have a great weekend with their extremely awesome aunt and uncle.

5.  For the Queen (typical vocabulary cannot describe her awesomeness) and me to remain afloat.  I believe it is your prayers that have made us corks in the hurricane instead of victims thereof.

Trent @ 4:07 AM, Wednesday
#MountainsForMaggie