Week 3 Update: still here but maybe (?) some light at the end of the tunnel

Two days ago, we rolled three weeks of very unexpected stay.  So far, my girl has been here longer than most anticipated, had a chest tube put in, pulled out, and put back in, and made friends with just about everyone she can.

Oh yes.  And her dad can take "See your child have a seizure" off his bucket list.  Check that box.

She makes nothing easy.

Overall, her spirits are good, she still smiles a lot, giggles hilariously at times, orders people around, demands people look at her when she's talking, and acts like she runs the joint.  She's a three-year old CEO.

On the medical front, there is a heart cath coming early this week which will hopefully reveal something that we can fix.  That is hands-down the best option.  Option A, as I've been telling my friends.

The condition that is causing her problems is that the pressure in her circulatory systems is higher than in the lymph system.  That's important because the lymph system typically dumps its excess and some other stuff (a highly technical medical term, I know) into the circulatory system.  So if the pressure is too high in the one, the lymph system will back up and put its extra elsewhere - like a little girl's lung.

Option A, then, is there is something anatomic causing her circulatory system to carry higher pressures, and a stint / suture / cardiovascular magic will fix it and she will stabilize quickly.

There are other options, but let's stick with praying for Option A right now.  The others get pretty dicey pretty quickly.  Patience is not in high supply but it is in high demand.

So here's how to pray for our little Minion CEO...

1.  Pray we can get into the heart cath procedure quickly this week.  The more quickly we get this looked at, the more quickly we have answers.

2.  Pray it shows an easily fixed Option A.  That would be catching a divinely orchestrated break, one which we would frankly LOVE to catch.

3.  Pray she comes through all of that fine and isn't too messed up by the anesthesia.

4.  Ongoing strength, positive outlook, and mental toughness for her.  Heck, you can pray that for all of us.

5.  We have been blessed by so many in so many ways.  Please pray that God will pour out His blessings on those who have blessed us.  They have given of themselves without thought or seeking something in return.  So I'm asking God to pour out in ways that they never would've anticipated but will thoroughly enjoy.

Thanks for staying with us.  We are still in the fight.

So, it's been two weeks...

We’ve been here two long weeks.  I don’t say that to gripe but to give it perspective, because two weeks has felt like a LOT for this unexpected, replan-the-holiday, keep-a-three-year-old-busy kind of stay.

I came up with another way of measuring this:  we have been in the hospital more than out since her surgery.  4 weeks in post-op, out 4 weeks, 2 weeks back in.  In case you’re keeping score at home, that’s 6 out of the past 10 weeks.

People ask how it is and my response typically is, “It’s a grind.”  And without the support of many and the prayers of many more, we would long ago have cratered.  So thanks.  Even yesterday morning, two friends dropped by during the brief time I had in the office and took time to pray.  I told them afterward how much I appreciated them and went to hug them, resulting in what was possibly the most awkward three-way-man-hug ever.  But hey, I was grateful.

Here is our current status:

She continues to drain from her chest tube.  We work hard throughout the day to keep it from kinking and twisting.  It appears to me that when we keep it untwisted and unkinked, the drainage is down a little more each day.  But then again I might be living in Half-Full Land.

Her spirits are good.  Outside of the tube and bubbling box, you wouldn’t know she’s sick.  On the outside, she looks great.  It’s what’s going on inside that is messy.  There’s a spiritual application there.

We’ve switched from IV to oral diuretics.  That’s one step closer to us getting home.  We have to keep the drainage going down while on the oral meds to stay on the right path. 

There’s been more talk about more surgical procedures but we’re trying to push them off as far away as possible on that stuff.  The Queen actually had that conversation yesterday.  Our favorite doc up here (who saved Maggie’s life two summers ago) told us to be sure and be patient.  We’re being patient.  Home is not better if there are more and painful surgical procedures that get us there.

By all accounts, we’re here through the Thanksgiving holiday.  That ought to be interesting.  And a good exercise for us, as a family, to find things to be thankful for while sitting where we’ll be sitting.

If you’re the praying type, here are ways you can hold us up…

She would continue to improve and we would have exactly zero steps backward.  All the medical stuff they’re trying needs to work.

She would continue to be able to find joy in the 250 sq.ft. that we are occupying.

The Big Three would hang in there.  Signs of strain are already present. 

Thank you.

One week in #MountainsForMaggie

We are officially in one week.  One week ago, I had just gotten Maggie settled into the room we were in then and hoping for a non-operative, medicine only, 2-3 day stay to get her pleural effusion squared away.

We received none of that.

Instead, she's had surgery, is on higher meds, is still connected to a vacuum box, has a chest tube, and is not going home anytime in the next couple of days.

Sometimes it goes exactly like we want it to.  And then there are times like these.

I honestly don't know why God hasn't answered the prayers we've prayed in the ways and timing that we've prayed them.  I have given him plenty of reason to do so.  So, it takes a little faith to sing, "You're perfect in all of Your ways to us" on Sunday mornings.  But it's still true.  And I still believe it.

As a quick update, she's doing well, sitting up, going on walks, seeing the fish, eating like a champ, and funny.  Her output is decreasing and changing to the right kind of color.  We have days ahead of us but hopefully not weeks (plural).

Some thoughts I've had since being here:

1.  We have our challenges, but there are others with much worse.  It's good to remember.  And humbling.

2.  I'm grateful we live locally.  I met a family from Mexico City whose little girl says hi to the Minion every time we're out and about.  They are close to discharge but get to stay in Houston for 2-3 more weeks at the Ronald McDonald house to ensure the health of their little one.  When we get out, I will sleep in my own bed and so will Maggie.

3.  We have great friends.  Thank you.  For everything.

4.  The medical staff here is top notch.  And smart.

5.  I have the briefest of sketches as to what happened in Paris today.  And a big earthquake in Japan. And other stuff here and there.  If Jesus rent the eastern sky tonight, I could not be happier.  In the word of the Apostle,
Maranatha!

#NT75 Day 60 - John 11-12 Miracles and Enemies

What a story today's reading unfolds for us.

But here's what sticks with me.  Lazarus has the miracle of a lifetime (quite literally) and STILL found himself in trouble.  He told his story over and over and many people put their trust in Jesus because of Him.  That's what a miracle is supposed to do - point to the Miracle Maker so that people believe and are saved.

For Lazarus, many did.

And then some others tried to kill him.

"So the chief priests made plans to put Lazarus to death as well, because on account of him many of the Jews were going away and believing in Jesus" (12.10-11).

His miracle was costing him.  Bigger than that, people saw the miracle and STILL chose to disbelieve instead of believing and surrendering their lives to Christ.

Even the receivers of miracles are targets for the enemies of God.

#NT75 Day 59 - John 7-10 and the importance of God's Word

Jesus said, in this verse, that our freedom is directly tied to the Truth.  When we know it, we have liberty.  When we don't, we live in bondage.

In the CIA building (pic above), it quotes the verse.  And there are others.

But what Truth is Jesus talking about?  He's talking about His Word.

"If you abide in My Word, you are truly my disciples, and you will know the Truth [by abiding in His Word] and the truth will set you free" (8.31-32)

So this is brief exhortation and encouragement:  be daily in the Bible.  Know what it says and it will lead you to liberty and love.  You will walk in freedom and with the Father.

Know the Truth.  You'll find it in the Bible.

#NT75 Day 58: John 4-6 and the importance of understanding Christianity

There are so many passages and teachings in today's reading that it is hard to pick just one to mull over and write something about, but here's my attempt.

In John 5, Jesus is in the middle of a diatribe about who He really is and then drops this little gem:

"Whoever does not honor the Son does not honor the Father who sent Him" (5.23, cf. 15.23)

In other words, you can talk about "god" all you want to.  But that's not what makes you a Christian.  Lots of people know, worship, follow, and evangelize for the sake of "god."  But that's not the way to honor God.

The way to honor God, the Father, is to honor His Son Jesus.

We, as believers in and followers of Jesus, are distinctly Christian, distinctly Christ-centered, distinctly Son-saved.  And so we honor the Father and the Son when we honor the Son.

Here's the translation to Tuesday:  in our culture, even still, it's pretty okay to talk about "god."  It's less okay to talk about One God.  And it's even less okay to give Him a name, to drop a name like Jesus.  But that's how we honor the One True God, we honor His Son Jesus with our words and lives and hopes and emotions and commitments and so on.

We honor the Creator by honoring Christ.  May it ever be.  Amen.

#NT75 Day 57: John 1-3 and maybe the shortest blog I've ever written

John the Baptist about Jesus in John 3.30:  He must increase and I must decrease.

More of Him,  less of me.

Him, not me.

What a prayer.  One I'm repeating constantly today.  Care to join me?