Sunday, December 20, 2015

Status Update for Day 44 (but hey, who's counting)

We have entered into our 7th week of time here at the fine institution of Texas Children's Hospital.  I really was told it was just going to be "a day or two" back in early November.  Those seem like far away words from a far away time.

Good stuff happening:

1.  Her chest drainage appears to be down along with a positive x-ray yesterday (Sunday morning).  Those are two markers we keep an eye on.

2.  She is her same bossy, demanding, center-of-attention self.

3.  We have on the radar a downgrade in her diuretic treatment (going from IV to oral).  All this assumes we keep going in the right direction - see below.

4.  Cousins came to see her yesterday and apparently had quite the Frozen karaoke moment.  That video may come back to haunt them on their wedding days...

5.  She got to see her older brother on Sunday and may get to see the Wonder Twins this week if they lift the visitation restrictions.

6.  They have eased her fluid restriction by 100ml.  That makes a girl happier because she can drink (even a little bit) more.

7.  Our friends adopting in Nicaragua have completed their journey.  A few forms at the US Embassy and they are homeward bound.  That has nothing to do with us but Maggie is a big part of their adoption story - and it's good to talk about events occurring outside the hospital room.  Especially happy ones.

Points to pray on:

1.  As of Sunday night, the Queen expressed some concern about her O2 saturation and some fear about Monday morning's x-ray.  You can pray both are fine.

2.  No steps backward.  Only forward progress, please.  The roll-out of IV-turned-oral-turned-reduced dosages is a long road.  And the longer we're on it, the harder it is on the rest of her systems.

3.  More Kingdom-related moments in the hospital.

4.  Everyone would get to be together at Christmas like we were at Thanksgiving (even for a few brief hours).

5.  The Big Three would continue to hang in there, know they are loved, and somehow feel secure in the midst of the world-rocking pattern we live right now.

I woke up Sunday morning trying to spark faith by reminding myself that Jesus reigns over everything and so it'll all be okay in the end.  I believe it to be so.  Sometimes more than others.

Thanks for staying with us.  We cannot say thanks enough.

This is the picture of her in the van on Gotcha Day.  From that point forward, I am forever smitten.  I'm her dad.  What can I say?

Wednesday, December 16, 2015

Wednesday morning update

I have to type this very quickly because there are people coming for my girl at any point.  Forgive whatever brevity and choppiness you encounter.

Yesterday was not awesome.  She had multiple complications from the re-accumulation of the fluid on her lungs.  It was the kind of not awesome that makes doctors furrow their brow.  When they get worried, I do too.

Yesterday was totally awesome.  My sweet niece and her friend came by and hung out for about 3-4 hours and the Minion had the absolute best time with them.  She laughed and giggled and took selfies and just enjoyed the interaction.

This morning is not awesome.  The x-ray looks like a blizzard broke in to her chest and had a party right over her left lung.  Our other three are feeling the strain of it all.  If they do a heart cath, the two structural things they're looking at are not easy fixes.  And I just resorted to asking a friend for some magic fairy dust to fix it all and then fly us to Hawaii.
Here is her medical status of the day:
They will reinsert the chest tube this morning.
They possibly will do some combination of the following:  MRA/V, heart cath, hokey pokey, the electric slide, or none of the above.
She feels better than yesterday but is diagnostically worse.
This morning is totally awesome.  I married *the* most incredible girl.  I have a great job with great people that has provided me fluidity, not just flexibility.  My oldest made an A in math without much help from his dad this go-around and after being sick last week.  Our friends don't seem to fade but actually grow in strength as this craziness extends into the 6-week realm (not to mention how endeared we are with them and indebted to them).  And, where we root our hope, Jesus still reigns over everything and has this under control and hasn't been impeached or abdicated. He sits enthroned today with a disposition that is for us.  I'm really buoyed by that this morning.  His attitude hasn't changed.  He, along with hundreds and hundreds of others, is praying for Maggie right now (Heb. 7.25).

Thanks for hanging with us.  I'll try to update more later today.

Picture of the blizzard in her left lung...

Thursday, December 10, 2015

5 weeks long and 10 Random Thoughts

We've been here 5 weeks now.  Here are some thoughts in no particular order.  Feel free to skip to the end to pray if you'd like...

1.  Hospital and hospitable have the same etymology but not the same experience.  I'm not complaining.  I'm merely observing.

2.  When she asks to go home, my heart doesn't break.  It crumbles.

3.  Hands down, we have some of the greatest friends in the world.

4.  Donald Trump is to American politics what Sponge Bob is to cartoons.  They both epitomize everything that is opportunistic and freaky.  If my 13-year old can diagnose a charlatan, it's bad.  At some point, we the people have to get serious enough about the problems and solutions and not be in love with our rage anymore.

5.  If they can come for Muslims in mosques, they can come for Christians in churches.  Either the First Amendment applies or it doesn't.

6.  The more complicated the world gets, the simpler and saner the call of Jesus sounds:  "Be faithful to the end, I've got the rest."

7.  I told a friend today our church is in the midst of a hard season but is doing great because the church has basically sucked it up and said, "Let's walk it together."  I stand by that 100%.  I'm not sure an outsider would see it because there's no griping or fussing.  It's a steely-eyed, gritty joy.  And I love them for it.  I draw inspiration from it.

8.  Texas Children's Hospital cares for a lot of sick kids and kids who are a lot of sick.  Every time someone punches the elevator to 9, I pray for their family.  Kids ought not have to see an oncologist.  Jesus, come quickly.

9.  There are tons of stories in the nursing core and doctor teams.  I like asking questions and getting answers about T's bracelet with the saints' portraits that he wears to remind him to pray or J's music selection that includes R&B slow jams and the gospel sounds of Fred Hammonds or E's allergies to basically the entire world yet a tenderheartedness that has prompted her to bring Maggie two hand-sewn blankets or ribbing a doc about his new baby's first Hanukkah and me reminding him that Jesus was Jewish too (he about busted a gut laughing, so don't get offended).

10.  Sometimes my prayer life feels more like John Candy in his movie The Great Outdoors.  In the scene I'm thinking about, the bear busts down the door Candy is holding back and bounces on top of it.  At one point, Candy just starts saying, "Uncle!  Uncle!  Uncle!"  That's about all I have some times.

Just a few quick prayer points:

- We need the strategies they're trying now to work.  No more guessing would be awesome.

- I think her soul is starting to feel the weight of this.  The Queen said she asked for home about 10+ times today.

- Endurance.  I have told multiple people:  what we're doing isn't hard, it's doing what we're doing over and over again that's hard.

- Security for the Big Three.  Their world is abnormal, and I don't want that to become normal.