Tuesday, September 30, 2014

Adrenaline Junkie

Remember that ridiculous 90s action movie in which a bus cannot go any slower than 55 mph or else a bomb will explode?

"pop quiz, hot shot"

At the end of the movie (spoiler alert?) our hero and the lovely lady, who have been stuck on the moving bus together for hours, finally land safely in the wreckage of the bus.  The music swells, and they share their first kiss ... and he romantically says ...

"I hear relationships based on intense situations never work"

she responds with something silly and they kiss again

snicker snicker ... i am ashamed to say i loved that movie when i was young ...

I thought about that idea this morning, though ... well ... actually the line just randomly popped into my head and it got me thinking ...

Is my relationship with God based solely on intense situations?

yup ... I just did that ... but now that we're here, let's be done with that analogy, shall we?

The past few months have been ... 'intense' seems like the wrong word ... it's been hell.  My family and I have been through the wringer this summer/fall with everything going on with Emma.

And God has been so faithful to sustain us!  He's carried us and strengthened us and answered our prayers and it's been amazing!

And now life is settling down.  Emma is slowly working on regaining her strength, and her skills are improving daily.  Josh and I have faith that we will catch up on sleep someday, and the number of snuggles Charlie needs on any given day is back to normal as well.  The biggest problem in my life right now is the fact that the city I live in is re-paving my street, so I can't park in my driveway ... which I think would be best characterized as a "first world problem"

So why are you downcast, o my soul? (ps 42)

It hit me hardest yesterday.  I couldn't figure out why, but I felt terrible.  I felt fat, ugly, useless, annoying ... I was in a "funk," I guess, and it was bad.

As a dear pants for water, so my soul thirsts for you, O God. (ps 42)

Life can get intense sometimes.  And during those times, it is crucial that I turn to the Lord.

But in the grassy meadows of life, where I am not in a valley or on a hilltop, I need Him just as much.

I've seen me without my Jesus.  It's not pretty.

And so in this season, and in whatever season comes next ...

The Lord is my shepherd, I have everything I need.  He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. (ps 23)  

I will yet praise Him, my Savior and my God (ps 42)

Thursday, September 18, 2014

I'm amazed!

A friend of mine put it well; God is good and amazing and loving and deserves honor and praise regardless of our circumstances.  But I sure do love it when He shows off a little bit :)

I am so thankful for how well things are going!

You would never know that it's only been two weeks since Emma's surgery.  She's totally got her spunk back.  With all that she's been through, her little spirit just amazes me.

AND she's basically regained all of her previous skills!

The only thing slowing her down right now is her stamina/confidence.  She used to be able to walk across our entire backyard without help.  Now she's hesitant to do so without a finger to hold.  I'm not sure if it's that she's not feeling confident or if it's just an issue of decreased muscle tone, but I'm not worried :)

She's a tough cookie.

And it's pretty fun to see the side benefits of this surgery that no one expected to be impacted.  Like, she's taller!  I'm not sure if it's that she's just standing up straighter or if it's actually that she's taller, but everyone who sees her often has noticed it.  And my favorite development is in her eyes.  Her eyes are brighter, open wider, and connecting with the world so much more than they have in a long time.  Her teachers say that, at school, she's so much more content and attentive and willing to wait her turn and participating beautifully.

(it's at this point that i'm choosing to stay away from a particularly nasty brand of 'mom guilt' ... apparently she's been in pain for awhile ... seeing how much better she feels now underscores for me how bad she felt before ... and 'mom guilt' says i should have figured it out sooner ... but like i said, i'm choosing, minute by minute, to let that go ... we found a problem and worked to fix it, end of story ... letting go of the guilt)

Praise God for His amazing work in my little girl!  His work in her life moves me to praise!

Friday, September 12, 2014

And ... exhale

It's a beautifully chilly day here in Minnesota.  Gray and cloudy.  


It's one of those rare cloudy days where you can actually see the rays of the sun stream down in lines like the pictures kids draw with crayons.



You don't get the see those sun rays without the clouds







I'm a bit late in announcing this because I was sick, but we're home :)  The moment Emma was settled in her own bed, I collapsed into mine with a fever and didn't rejoin the land of the living for two days.

This month has been really hard.  Really hard.  

But, oh, the blessings!

We've been so supported, and we're so thankful!

And now that she's home, Emma is standing taller than she ever has, and people are even saying her eyes are open wider.

She's doing so great.

Praise God from whom all blessings flow.  He daily bears our burdens.

And He carries us

Not that I like needing to be carried :)

But sometimes the Son's light shines brightest through the clouds

Sunday, September 7, 2014

Sunday afternoon update

It's been a long week.

Emma earned herself at least one more night in the hospital last night.  She is having trouble keeping her oxygen levels up when she sleeps.  She's responding to treatment, and everyone seems optimistic that it's just taking her system a little extra time to wake up after being sedated for that long.

I hate that she's been through all this, but she's taking it like a champ.  Her favorite person in the hospital is the guy who comes to do her "back massage" routine.  She gets very mellow after it's done :)

So, specific prayer requests:


  • That Josh and Charlie and I would keep our spirits up.  This is getting long.
  • That Emma's lungs would supply her body all the oxygen she needs tonight so that we can go home tomorrow.
  • That her gut would continue to not surprise us.  We're taking things very slowly there and things seem to be going well, although she does still need to produce "evidence" that everything is back in working order 
  • That we would not go home too early.
Huge praise and thanksgiving for awesome nurses and an amazing support system surrounding us this week!  Thank you thank you thank you!

Saturday, September 6, 2014

Better?

Emma appears to be on the mend. It appears the drugs are out of her system and now the jitters are gone. She doused herself and me in pee last night. That was fun! She needed oxygen all night but just took a nap without oxygen, so we're done with that for now. She slept in till 10 this morning and then had some chest PT. They basically vibrate on her chest and break up the crud in her lungs. She got some good stuff up after that and she actually liked the "massage". We're currently doing that again and she's in heaven. So the feedings have restarted slowly and we're back on track. Keep the prayers coming!

Friday, September 5, 2014

Don't do drugs!

Emma is giving a run for the money this evening.
Emma doesn't appreciate the cocktail we've been giving her. Last night she wasn't comfortable in her own skin. We think it was a bad reaction to Valium. She did finally fall asleep for a couple hours in the middle of the night. We're all a little fuzzy today!
So we got the boot from PICU (intensive care) and now we're on the neurosciences floor. We started slowly putting fluids her stomach and that went well all afternoon and we all got a nap.
This evening she's decided to throw up the white flag. Her oxygen started dropping, she started wretching and even passed out at one point. The conclusion is her little body is struggling with the drugs and the breathing tube removal and lack of sleep.......it's too much. So the feedings have stopped and she's getting supplemental oxygen and she's resting. We've had great support while we've been here, and we know that God is here with her tonight and we pray he continues to watch over our peanut.

Thursday, September 4, 2014

Speechless



In the words of our little bear, hahahahahahHA! We are blown away and amazed! Emma is awake and smiling and giving high fives and signing her desire to 'go go'. We we're prepared for today's wake up to be very difficult for Emma, and therefore us. And, once again, the diva has come through with flying colors! If it wasn't for the fact that she's on a lot of pain meds and is a drunken monkey, we'd say we have our bear back. She's 'feisty' and 'strong', in the words of her care team. Apparently prayers are working, so here's our next request: tomorrow we get to restart the gut. That's the thing that will determine the duration of our stay. Please pray that this awesome trend continues and she surprises us again!

Wednesday, September 3, 2014

So far, so good!



Surgery went well. As planned, she is still sedated in ICU. We'll probably start to wake her up as soon as tomorrow, but since she has to lie flat, we're glad she's asleep for now. The surgeon just came in and wanted to make sure all of her limbs we're moving properly, so they lifted the sedation just enough to see Emma get mad. And get mad she did! Everything is working great! Tomorrow's wake up may be rough. We're praying for a smooth transition. In the mean time, we've changed her button, we're working on a pedicure, we did her hair, and we'll see what other torturous items we can check off while she's out.

Tuesday, September 2, 2014

Wait ... so, WHAT'S happening?

A couple of people have asked, so here's the short version of how we ended up doing surgery:

End of June/beginning of July, Emma started having lots of trouble walking.  It took us awhile to take it seriously because it started around the same time as a couple of small bouts with various viruses, so we thought she was just cuddling because she didn't feel good.

Beginning of August, we finally started to believe that she really COULDN'T walk.

We did lots of tests.  Sedated MRI of her brain and ears, vision tests.  Finally ended up in neurology.

Neurologist ordered a spine MRI and an EMG, which checks nerves.

EMG was inconclusive, but results may indicate that she had Guillian Barre Syndrome, which is a nervous system reaction to a virus and goes away on it's own.

MRI showed a tethered spinal cord.

We will never know if she had Guillian Barre or if the spinal cord was causing the issue.  She's been doing a lot better in the last two weeks or so, so I suspect that an illness played a role in all this, but now that we've found the tethered cord, we can't ignore it.

Surgery to release the tethering will open up the dural sac which holds the fluid around the spinal cord.  Anytime that sac is opened, a patient has to lay flat for the first 48 hours of recovery.  Emma won't be able to do that willingly, so we are going to have to keep her sedated for a day or two.  Because of Emma's airway issues, mild sedation is not an option, so she'll go straight from the OR to ICU where she'll stay intubated and under full sedation.

After we wake her up, I'm guessing we won't take the IV out until we see evidence (poop) that her gut has "woken up"  ... this has been a problem for Emma even after she's been out for an hour or two ... so I have no idea what we'll be facing when she wakes up.

I don't know what an ICU stay looks like at this hospital, but I'll update here when I can.

I'm sad that we have to do this, but the grace of God is holding anxiety at bay.

Actually, right now, my primary emotion is "Game on!"

Thank you so much for praying!