An Era Ends

Today, about 2 p.m., my Grandma Kay passed away.  She's lived a full life, a sometimes hard, but good life.  I don't think you ever saw her, EVER without a smile on her face.  At least I didn't.

My "real" grandma, who was also an incredible woman and dearly loved, died when I was 14.  I don't think I'll ever forget that morning when my mom heard me get up from school and came downstairs to tell me.

Not even two years later, my grandpa remarried.  With all the self-absorption and selfishness of a teenager, I was angry.  How could he do that?  How could he "forget" grandma?  I shoved aside the memory of him in the months following her death, lost, lonely, aching.

Then I met Grandma Kay.  So different from my grandma, and yet, so very wonderful.  She would tease Grandpa out of a bad mood.  She'd laugh and hold his hand.  And I saw a spark of life come back to him.

Because of her, Grandpa lived 20 years more.  I don't think he would have lasted another year without her.  And my younger sisters knew him, and my children knew him.  She's the only Grandma Brown they really remember.

A gentle soul, always quick to see the good, even when things were hard.  I remember visiting one time on our way up from California, and one of my girls asked me, "Is she your real grandma?"  I don't know if they'd heard me mention that my grandma had died, or why they even wondered.  But they asked, with her sitting right there.

I looked at her and smiled, and asked my girls, "Is she married to my grandpa?"

"Yes."

"Well, I guess that makes her my grandma."  And yeah, she was, and she is. And I miss her.

I hope you're having a grand party in heaven, Grandma Kay.  Give Grandpa and Grandma Brown a hug from me.  I know you and Grandma are going to get along great.  Tell everyone else hi for me.  I love you.

The Ship

A ship sails and I stand watching till she fades on the horizon and someone at my side says She is gone.

And just at that moment, when someone at my side says she is gone, there are others who are watching her coming over their horizon and other voices take up a glad shout – There she comes!

That is what dying is. An horizon and just the limit of our sight.

Lift us up O Lord, that we may see further.

By Bishop Brent

Busy 36 Hours!

My little night owl thinks morning comes way
too soon.  "Someone turn the lights off!"

 I woke up about 3 a.m. on Monday morning (yeah, hospitals are really good places to catch up on your beauty rest), and couldn't go back to sleep.

I kept thinking of everything we needed/wanted to get done before school started on Wednesday, and had no idea how it was going to happen with me and Aaron in the hospital.

Then I got to thinking about exactly what we were doing to help him, and how I can do the very same things at home.

Yeah, it'd be more work with me doing the breathing treatments and assessments, more suctioning, etc, but we weren't on IVs, or even antibiotics.  We were just trying to work his oxygen down.

So when the doctor came in the next morning, we talked, and she agreed.  We had our walking papers by noon.  Yippee!!

All ready to bust out as
soon as our ride comes.

So I got home, got him situated, and took off for one of four "Back to School" events.  I actually only made it to three over the next two days, but since Aaron starts a week later than the rest, I'm going to try to drop in there on my own time.

But between Monday afternoon and this morning, we got Back to School visits, and two shopping trips (so far!), four haircuts, and some kids' rooms switched.

And TONS of stuff sorted to either give away or throw away.  And we found water in one of the basement bedrooms.  So that kid is currently sharing with another brother while we get it all figured out.  (In every life a little rain, or water, must fall and that kind of thing, I guess.)

So it's been a very busy 36 hours, but it's sooooo good to be home.

And Aaron must agree.  He's almost back to his baseline.  He's still got the morning junk, but otherwise, he's looking pretty good!  I think he'll be all ready when that big yellow school bus pulls up a week from today.  So fun!

It is better to wear out than to rust out. ~Richard Cumberland

Be Still, My Soul

We've made it to the floor!  They made the switch to his Trilogy vent about midnight last night, and he spent most of the night on seven to eight liters of oxygen.

Yeah, on our vent we measure in liters instead of percentages.  I know, confusing.  But anyway, we HAVE to be below five liters and really should be below four in order to come home.  We've spent some time at four today, actually quite a bit.  But when he's active, he's back to eight.  So probably not tomorrow, but maybe Tuesday we can get sprung.  Hoping...

Anyway, church services today were really good.  As always, it seems that it's the music that really touches me.  And the four numbers today really fit together to remind me of my Savior, of His strength and love and protection.

The opening hymn was "Jesus, Lover of My Soul."  We sang of His refuge, of His protection from the storm.  The image of Him covering and sheltering me, standing between me and troubles.  No, they're not gone, they won't be gone.  But He is there as a comfort, as a haven, as a buffer for them.

In "Jesus, Once of Humble Birth" I was reminded of all He has done to be my Savior.  He has been there, walked the path, suffered, bled, died and rose again to save me.  Now He is glorious beyond description.  He bore my sins, my mistakes, my sorrows, my griefs, and my joys, my triumphs.  Because of what He went through, He knows how to be my shelter from the storm.

"I am a Child of God."  Yes, I am.  I am His child, and He loves me.  He stands by me, knows my needs, knows what I need to become like Him.  And "Be Still, My Soul" reminded me that He does know all.  And His plan is infinitely better than any I can come up with.  He is by my side, and although many things, all other things, change, He does not.  He is faithful, always.  When I can't see, when I'm confused, He is not.

With so many unknowns, with so much uncertainty, I needed these messages today.  I have been anxious these past few days, chaffing that Aaron wasn't improving as fast as I needed him to.  Notice again where my focus is, on me, my plans, my thoughts.  School is starting soon, and I worry about how things are going at home.  I want to be there, need to be there, want to be here, need to be here.

But what I really need is to listen, to be still, to trust.  No, things aren't going to be perfect.  But that's okay.  If it was easy, we wouldn't grow.  Muscles don't grow without resistance.  And I can't become who He wants me to be without struggle.  He is my best, my heavenly Friend.  And I needed that reminder today.

Be still, my soul: Thy best, thy heav'nly Friend

Thru thorny ways leads to a joyful end.

Katharina von Schlegel

Maybe???

The past 36 hours were a bit rough for us, both him and me.

Yesterday morning, we turned his PEEP back to 10, our home settings.  And he said, "more oxygen, please, lots more!"  Not exactly what we were hoping for.

In fact, by last night, the question wasn't could we use our home ventilator, it was can he stay on a PEEP of 10, or did we need to increase it again.  The decision was made that if he had to go above 60% FiO2 (amount of oxygen bleed in) for more than 15-30 minutes, we would have to go up.

I got up this morning and was pleased to see he was still on 10, but only by the skin of his teeth.  He'd been on 60% all night.

By mid-day, he was on 80%, and still struggling to maintain 85% saturation rate.  For those who might not know, ideal is low FiO2 and high sat rates.  The sat rate is the amount of oxygen in his blood, while the FiO2 is the amount of oxygen needed to maintain good sats.

We did start some oral steroids this morning, but we also got him moving around.  He's been pretty stationary since we got here.  He hasn't wanted to move a whole lot, the bed is small, and it's just soft enough to make it hard to move around.  We turned him on his belly and patted his back until he fell asleep.

He slept for SIX hours!  And during that time, maintained sats in the mid to high 90's, even when we turned him down to 40% FiO2.  Once he woke up, and turned back over, they dipped a little bit, but only to the low 90's.

He's back to singing to us, and as soon as they get around to evening rounds, we'll try to make the jump to his ventilator.  NOW he seems ready.  Yesterday, there was no way.

But as often happens in a PICU or emergency department, there are other more pressing needs.  They've had quite a number of admits, and frankly, Aaron's probably the least sick of any kid in here right now.  In fact, if it wasn't for needing a vent that can only be used in an ICU, he wouldn't be in the unit.  So we'll have to see what happens when.  I suppose it's possible that we won't make it until tomorrow morning.  But at least it's because of other outside challenges, and not because he can't handle it.

And on that note, please keep the other families in here in your prayers, too.  There are a lot of kiddos in here, some very little ones.  And not all of them are going to have as good an outcome as we are.  It's going to be a really difficult time for some families.

So keep your fingers crossed and pray that we can make this jump.  We've got things to do, places to go, and people to see.  Which are all kinda hard to do from this little room we've been calling "home."

 I think in terms of the day's resolutions, not the years'. ~Henry Moore

Making Progress

I don't know if it's because he's never seemed that "sick" this time, or what, but this has felt like a very slooooooow process this go around.

I mean, on our bad days, we've pulled less "stuff" out than on our good days in previous stays.

So mostly, it's been watching and waiting while the vent has supported him, but nothing else really.

Yesterday evening, we decided to see if we could pull back a little bit.  And this morning, a little bit more.

He's actually down on his home vent settings right now!  He's sleeping, so we'll see what happens when he wakes up.  But it's progress, and quite a bit.

There are still a few more things that have to happen before we can break out of here.  He needs to make the jump to our home ventilator and we need to come down on his oxygen.  Where he is right now, if we can make that jump, is where we were ordered in.

So there's still some work to do.  But at least we can see progress.  And progress is good, right?

Little by little, one travels far.

J.R.R. Tolkien

Party Time!

Party time in PICU 22!

That 55, the first number, that's the lowest it's been,
and that was early this morning.  It's been 65-80
the rest of the day.  And that 4th circle, the 14, it needs
to make it's way back to 10.  Yep, sick.

Seriously, it's like someone forgot to tell him he's sick.  And he IS sick.  You only have to look at the amount of support he's requiring to know that.

He's probably going to hit the worst today or tomorrow. We've already had to increase his oxygen quite a bit today, and we've pulled tons of garbage out of him.

But he's been playing and smiling and holding concerts, too!  In fact, yesterday, he sang for about an hour right before one of his CPT and breathing treatments, and the RT mentioned this morning that it was probably the best treatment he could get.  Now if we could just order "singing therapy."  I mean, they have music therapy that comes around, but it's him that we need to sing.

Here's some fun pictures and a video.  I apologize for the blurriness, but you get the idea.  And apparently holding still for pictures was not on the agenda.

It appears that as long as he's got the support he needs, he can carry on pretty well.  And I guess that's probably true for all of us, isn't it?

You can do anything as long as you have the passion, 

the drive, the focus, and the support.

Sabrina Bryan

He's Sick, We're Back (I Think We've Sung this Song Before)

Sleepy little man...

Wellll....

We didn't skip it.  In fact, we found it, in a very big way.

Sunday, Aaron did "okay."  Okay as in, we didn't go anywhere and only bagged him three times, but not in quick succession.  He even made it through the night Sunday night, although I packed the bags and told the kids I gave us a 50% chance of being there in the morning.

Monday morning I managed to get a couple errands run, some files for the office done, and a letter written to Jonathan.

And Aaron decided he'd had enough.  We were maxed out on the oxygen, but we had been on Sunday, too.  I was hoping that if I bagged him and popped his lungs open a little bit (like I did the day before) we might be okay.  But just to make sure, I put in a call to our trach whisperer to check my thinking.

It's hard to be happy when you can't get enough oxygen.

She wasn't impressed.  She gave me an hour to get him down at least a little bit, and if not, we needed to be headed her way, in an ambulance.

Aaron must have heard us talking and decided to not make anyone wait.  I called her back 15 minutes later, as I was bagging again, and told her this was her courtesy call and we were headed up.

Yep, we're back.  And probably for a while.

He's got, wait for it . . . yep, it's Rhino.

Silly boy playing in the ER

One friend suggested that rhino was getting old and next time he should focus on catching an elephant instead.  Made me giggle.

Anyway, apparently we haven't even hit bottom yet.  We're on day three, and usually it's at its worst somewhere between day three and day five.  He's in the PICU, resting a LOT, and pretty miserable most of the time.

He's also on increased ventilator settings on the PICU vent.  For those who know what it means, we've increased his PEEP from 10 to 14.  For those who don't, let's just say, it's some pretty significant support.

But we'll make it through.  Tincture of Time and all that.  And he still does have some smiles in him.

And those vent trials?  Yeah, those things that are now on hold for a while?  They've done a lot of good anyway.

Here's a couple of x-rays.  The one on the left is from just over a year ago when he came in with a bad asthma attack, but after the attack is over.  The one on the left is yesterday.  In these pictures, black (other than the heart, ribs, etc) is good.  Cloudy white is not so good.  We're thinking that yesterday's x-ray is looking pretty darn good.  They also repeated one this morning because of the increased PEEP, and it looked almost identical to yesterday's.

So when we finally kick this thing to the curb and get back, we'll start over again.  Probably not at the very beginning, but we'll figure that out when the time comes.

So here's to sleeping, breathing, and working through things.  It won't be quick, but we'll get there.

Sleep is that golden chain that ties health and our bodies together.

Thomas Dekker 

It's the Little Things...

Practicing Breathing (who knew it was such hard work!)

We've had a pretty busy week around here.  Joseph has been in band camp, other olders working, and a soccer tournament.

Through it all, Aaron has been working hard too, on breathing.  This little man is doing about four hours off the vent in the morning, back on for afternoon, and another four hours each evening.  Mid-week, we also got some labs to tell us exactly how he's doing, if he really is doing well, or just compensating until he can get back on the ventilator.

He ROCKED them.  They were amazing!  They showed he was a bit tired, but this was also at the four hour mark.  So we keep moving, or we kept moving.  Yesterday, he didn't do quite as well.  We were gone all morning, so only did it during our two-hour stint at home early afternoon and then tried again in the evening.  He almost made it to three hours, but was needing too much suctioning, so I put him back on the vent early.

Hanging out on the soccer field, wearing
orange for his brothers' teams.

Last night, well, the nose started pouring forth.  This morning, he's gunky, tired, and we're back on snot watch with extra support in place.  It's been just over three months since he was last sick, and this would be the first time this year (2015) that he's caught a cold.  We're overdue, but it would still be okay if we skipped it.

Anyway, this week has also been a bit emotional for me.  See, when he gets sick, I get slapped upside the head with reality again.  This child is not "supposed" to live, he's "incompatible with life."  But along with sick comes a lot of things that need to be done for him.  So I stay busy.

This week's moments have been a bit more cerebral.  Make-A-Wish is a fabulous organization that grants wishes to kids with life-threatening conditions between the ages of 2 1/2 and 18 years old.  (Yeah, he fits in there.)  I finally got around to filling out a request form earlier and we got our approval letter this week.  

I'm so thrilled to be able to do this for him, but yes, it's another reminder, and that's kinda hard.  We're hoping that they can help us get a handicap vehicle for him.  As he's gotten bigger, it's gotten harder and harder to take him out.  And this little boy LOVES to get out.  He loves meeting people, seeing new things, but more and more, I'm finding I wait until someone else can watch him or run my errands for me.

Big brother plays the baritone in the band.

He's 45 pounds and doesn't support any of his weight.  Then there's all of his equipment.  And what's a slow process in good weather is simply dangerous in bad weather.  He and his equipment can be exposed to the elements for up to ten minutes for loading, and unloading.   (As a side note, because of the nature of his wish, Make-A-Wish policies won't let them fund it completely.  If you wish to help out, please contact me privately.)

So while this is a good thing, a wonderful thing, the emotions it stirs up are a tiny bit raw.

Alpine Days 2010

Yesterday, Alpine Days 2015

And then we had our hometown parade yesterday.  It's the good ol' fashioned kind.  Kids on bikes, local high school band, and lots of candy being tossed to spectators.

Aaron has been to every one so far, starting back as a tiny five pound infant, still not quite filling out his preemie clothes.  I love that he gets to go to these.

And I love it when I see our local fire department's eyes light up when they see him happy on the side of the road, instead of being loaded into one of their ambulances.

How come you're crying, Mom?

But what happened there was totally unexpected.  It was so small, so quick, I know I'm the only one who really saw what happened.

You know how it goes when you toss a bunch of taffy and tootsie rolls into a crowd with kids.  They run, scramble, try to grab it fast.  Smiles, laughter, and fun times.  But then, a kid, maybe eight years old? I don't know.  I really didn't get a good look at him.  He saw Aaron.

And he reached into the bag of candy he was passing out, came up onto the grass, and put three pieces in Aaron's lap.  I cried.  I cried again last night telling William about it.  And tears are filling my eyes as I write this now.  He saw him.  He noticed.  And he acted.

I have no idea who he was.  I don't know if he even remembers.  But I will.  I always will.  And I trust that God will note that act of compassion, of love for one of His little ones.  Such a little thing, a tiny deed, but such a tender mercy.

It has long been an axiom of mine that the 

little things are infinitely the most important.

Arthur Conan Doyle