Thursday, June 30, 2016

We Made it Home (a Couple Days Ago, Sorry)

Sorry for the delay in posting, but it's been a bit crazy around here.  No, nothing bad, just general, life goes on crazy.  You know, work (me and the kids), yard work, housework, soccer practice, play practice, etc.

But we did make it home from the hospital on Monday.  He continues to have spikes in his oxygen needs, but they're becoming more and more manageable.  I think it's just going to take time to get the old formula out of his body systems.

And speaking of eating, we're going to be trying to transition him over to a blended diet. You know, real food instead of formula.  Can you imagine having the same exact meal for every mean, for 4+ YEARS??  Yeah, sounds yucky to me, too.  I've been putting together information and we're working on getting equipment together.  To be able to create a blended diet, we need to get a high powered blender like a Blendtec or a Vitamix.  The others simply can't make it fluid enough to not clog his g-tube.

Field trip to dentistry
with my entourage.
And I've been gathering information and learning what I need to do to make sure he gets the nutrition he needs.  But it's also kinda funny.  No matter how well-balanced or unbalanced it will be, chances are it'll be much more nutritional than my other kids had at his age.  They kinda lived on mac and cheese, or bread, butter, cheese and raisins.  Yep, his will have more variety than that.  And they seemed to turn out okay, at least so far!

But I'm excited to try a new way to help him out.

Wearing his lead vest, and thinking,
"There's no way I'm putting that in
my mouth!"

Before we left on Monday, we went up to the dental clinic to get x-rays as a follow-up to his surgery in January.  It's kinda funny.  He was still inpatient because computers were having challenges, so we had to work with inpatient protocols.  That meant we had to have a respiratory therapist and a nurse, and the hospital vent, oxygen, suction, and pulse/ox machine. So it took three of us, two equipment poles, and his wheelchair.  When we left two hours later, it was me and him and his wheelchair, nothing more, and I drove home that way.  Yep, we figure out how to get things done.

And this kid, he HATES having anything put in his mouth, unless he does it and it's his idea.  It took a little bit to get good images because we had to put a probe in his mouth.  Nope, not too impressed, but he recovered well.

He won't be having his surgery that was scheduled for next week until the end of September.  And now, he's back in school, LOVING it, and doing soooo much better.  I just wish I'd figured out earlier that the formula was the issue.  At least we know now...

Knowledge is a sacred cow, and my problem will be how we can milk her while keeping clear of her horns.  
~Albert Szent-Györgyi

Sunday, June 26, 2016

Tests and Thunderbirds

Playing with his plane, wearing his
Thunderbird pin.
It's been a couple of days, and through process of elimination, we might have some answers.

See, if it's his gut, that's all well and good (actually very good), but if the correlation doesn't equal the causation, we might be missing some really big issues.  Thus the testing.

First off they did abdominal ultrasounds to look for tumors.  Yeah, cancer, the big C.  When I brought up in rounds on Thursday morning that kiddos with T18 are more prone than the general population to kidney and liver cancers, the attending's eyebrows went up.  He was supposed to say there was no connection  Um, nope.  He said there could be, and it could be missed on exam or x-rays if they were towards his back.  Not so reassuring.  However, when they imaged him, the didn't see anything.  BIG sigh of relief.

Then they scheduled him for a CT scan of the lungs, looking for scarring or other things that would cause his high oxygen needs.  It's kinda confusing to read the results, but it looks like the long and short of it is there isn't scarring but his stiff pulmonary arteries (tubes that carry the blood from the heart to the lungs) are bigger and stiffer and are squishing his lungs a bit.  (Squishing, nice medical term, huh?  I came up with that.)  On the right side, it's actually compressing the right main airway pretty significantly, the left side, not so much.  The biggest issue here is that with a more narrowed airway, it's easier to plug and block off.  Have I mentioned lately how much I hate pulmonary hypertension?

Having fun playing with sounds.  Doesn't look sick, does he?

But during all of this, Wednesday afternoon they switched his formula back to what we used to do.  And guess what we were seeing by mid-day Thursday?  Lower oxygen needs.  He was still kind high, but by Friday he was pretty much back into his normal range.  They moved him to the floor and we started working more on his feedings.  Up until Saturday morning, he had been on "continuous feeds."  Those are exactly what they sound like:  constant, very slow feedings.  But that's harder to maintain with a schedule, and it's actually good for the body to have bigger, more spread out feedings.  So mid-day yesterday we consolidated some of them.

Usually, he gets five "bolus" feedings each day over half an hour, and then a slower rate over five hours at night.  Right now, we're working on doing his bolus feeds over an hour and watching to see what he does.  See, they're also still pretty concerned about his heart and that dang pulmonary hypertension (PH).  There's been talk of getting another heart cath, where they insert catheters through his femoral artery and/or vein and measure pressures in his heart.  Obviously that's not without risk.

Soooo, if he can maintain good saturations on normal amounts of oxygen through today (and he did yesterday) then we should bust out of here tomorrow.  If he struggles at all, the heart cath goes back on the option board.  Can you guess what I'm hoping for?  I mean, we don't have many more tricks we can pull out of the bag anyway in regards to his PH.

We had also been invited to go to the Warriors Over the Wasatch Airshow with Make A Wish on Friday.  Um, yeah, Aaron wasn't approved for that field trip.  So William brought Mary, Andrew and Michael and picked me up on the way.  Each Make a Wish family was assigned an escort.  Ours was TSgt Derrick Tibbs and he was a wonderful guide!  He's been in aircraft maintenance so he talked airplanes with the boys and was careful to watch for anything that made our visit better.  I miss being on military bases, the courtesy, the attention to detail that seems missing in so many aspects of our lives.

It's been ages since I've watched the Thunderbirds, but I have great memories of watching them, especially at the Air Force Academy when I was in grade school.  They'd fly for graduation and they'd pass over the field between my school and my house.  I swear, it felt like I could reach up and grab a wing.  And I felt like a kid again on Friday watching them.

After they flew, the crew came over to the tent where we all were and spent time with the families and kids.  They wanted the Make A Wish kids all in a picture, but since Aaron wasn't there, Michael stood in for him and got his pin which made him an honorary Thunderbird.  When we got back to the hospital, they performed their own stunts and moved us up to the floor.  I put Aaron's pin on him and he had fun playing with his planes, including the F-16.  As much as he's tied to medical stuff and his life revolves around it, he's also a little boy, a kid, and he likes to play.

So very grateful for the many men and women, and their families, who sacrifice so much for our freedom.

From every mountain side
Let Freedom ring.
~Samuel F. Smith, "America"

Thursday, June 23, 2016

Tests and More Tests

We're still here, still scratching our heads.  Still using a lot of oxygen.

Yesterday we changed his formula back to what he had been on for just over four years and I really hope, I NEED that to be the answer, but it may take time if it is.  Whatever, we'll give it to him.

Not Aaron's airway, but similar.
They also had ENT come by and look in his ears (they're sooo hard to visualize 'cause they're so tiny) and scope his trachea.  Man, I wish I would have got pictures of the scope!  It was beyond cool to see!  But I was too busy geeking out to remember.  Sorry.  You'll have to make due with an internet photo, but really!  They put the little camera down through his trach and into his lungs.  I could see where it branched off into the left and right lung, and also the little bit of tissue they've found that sorta blocks the upper right lobe and everything.  Like I said, it was amazing!

The best part was that it was wide open, clear and clean, with no signs of growths or scarring or anything.  I mean, when you're sticking a vacuum down your kid's throat on a fairly regular basis, you do sometimes wonder if you could be causing issues.

Today pulmonolgy is supposed to stop by and there is talk of a CT scan of the lungs.  It's something we've discussed before, but it's becoming more of a reality.  Has his lung disease progressed?  Is it something that needs to be addressed?  Can we?

And tonight he'll also get a couple of abdominal ultrasounds just to rule out problems with his liver or kidneys.  Yeah, we're trying to cover all the bases.

And we're still hoping it's that he just didn't like his dinner.

The only courage that matters is the kind that 
gets you from one moment to the next. 
~Mignon McLaughlin

Tuesday, June 21, 2016

Same Tune, Different Words

I'm going to try to make this coherent, but a serious lack of sleep and not a lot of concrete information may make it a challenge.

We're back, yep, up at Primary's.  Yes, again.  I mean, they're great and everything, but this is getting kinda old.  But here's how it all went down.

On Sunday I wrote that he was having digestive issues.  We'd stopped his food and were giving all kinds of medications, etc, to get things going again.  He was also incredibly high on his oxygen.  Prior to stopping his food, we were back to bagging him multiple times a day, always in conjunction with a meal.  Sunday evening, things finally started "moving" and we helped them along with an enema.  Monday morning, I did some more research into his formula, both the one he'd been on for about four years up until March and his new one.  They're very similar.  The new one is simply a reduced calorie version of the old, and we'd been diluting the old so much that the water to calorie ratio was the same.  Except as I did some digging, the nutrition is actually different in several areas.  I think that may be the cause of so many, many issues we've been dealing with for the last few months:  the asthma, the increased plugs, the increased oxygen needs, and now the mess with his gut.

I spoke with a developmental ped, Dr. M., at Primary's on Monday.  She wanted to add in yet a couple more things to help keep things going, and told me that since it sounded like he was well cleaned out, to go ahead and start his formula again, using half Pedialyte and half formula for 8-12 hours and then just formula. He was still on a lot of oxygen and she was concerned, but said that as long as we didn't end up bagging him too much and he looked and sounded good, we could stay home.  Sounded like a good plan to me.

Except, it wasn't.  We started with his 5 o'clock feeding and I almost threw in the towel with that one.  Once again, totally maxed out on what I could give him for oxygen and needing to be bagged.  At 8 o'clock, he was asleep and so he did pretty well with that meal.  We were even able to wean his oxygen a little bit.

Well, it turned out to be a late night with kids getting home from work and everything.  (Oh, and I'd had no nurse on Sunday night, so that was about four hours of interrupted sleep.)  By the time I got to bed it was just after midnight.  Aaron's nighttime feeding starts at midnight.  At 12:45 my phone rang.  The crazy ringtone that is only assigned to my nurses.  He wasn't doing well.  We'd also given him albuterol and he was still in the mid-80's.  So we bagged him, got him up to where he belonged, and I tried to go back to bed.  And the phone rang again at 1:19.  Now he was in the low 80's.  Not real great.

I came out again, we bagged again, and he took a little longer to respond.  I decided it wasn't going to work and started to throw together the things we needed.  He decided to fill his pants, a lot.  I thought maybe we were okay, and we settled in to watch for a little while.  But at 2:00, he started to slide again.  So we put in the call.

Our friends at Lone Peak Fire showed up to help us and we got up here about 3:00.   The guys on the floor decided they weren't comfortable with bagging him whenever he was eating, so we landed in the PICU just before 6:00 and I had a 9 o'clock meeting.  By the time we got report done and all settled, I decided that a shower was going to have to substitute for sleep and got going.  I made it through the training meeting and a committee meeting at lunchtime and came back and crashed, hard.  

Aaron slept quite a bit today as well and was looking really good for a while.  They stopped all his  feedings while gathering information and studies.  Everything looks good, sounds good, except he needs a ton of oxygen.  About noon, they started feeding him again, 30 ml per hour.  That's two tablespoons per hour, not much.  And they go up by 5 ml (one teaspoon) every four of hours.  At this rate, it's going to take a while before he gets to where he doesn't need his IV.  He usually gets about 1450 ml/24 hours.  And now that he's awake, he's back to ten to 12 liters of the good stuff.

So I guess the moral of the story is, eat your dinner and don't complain, or you might end up in an ICU with almost nothing to eat at all.

Anyway, I know this is a bit disjointed, but the brain is still a bit rusty.  We don't know how long this is going to take, what is going to be the end result.  He's never had this trouble before so it's not like rhino, which I hate but know the timeline well.  But he's happy, very happy, and pulling on all his wires and tubes.  He's tucked into his tent bed that keeps him safe.  And there are a lot of people trying to figure things out. 

One of my friends said to tell my silly boy that there are better ways to see an ambulance, they give free tours in the daytime. Yeah, we might have to try that sometime. Maybe when he's breathing better. 

“Healing in a matter of time, 
but it is sometimes also a matter of opportunity.” 

Sunday, June 19, 2016

Keepin' It Real

Not sure where this is going.  (I know, you've heard that before.)  But from things I've been told, I get the impression that some people think this medically fragile life is easy, and others feel we're some kind of super family.  Nope, neither one.

I think it's called "extreme parenting."  Is that a "thing?"  I kinda think it's the parents who are required to go to extreme measures to keep a child alive and also enjoying life.  People look at the number of kids we've got, the outings we get Aaron to, and the fact that he's still here and happy when so many, many kids like him have passed on, and wonder how the heck we do it. Yeah, sometimes we wonder, too.

It's not always easy.  In fact, sometimes it's hard.  It certainly requires a ton of planning, but most of the time, we make it work pretty well.  And we need it.  I need it, Aaron needs it, and the rest of the family does, too.  Staying home all the time isn't healthy for anyone.

This past month has been interesting, to say the least.  I'd gotten comfortable with the routine, the meds, the vitals, the alarms (oh, the alarms...).  And then things got changed up.  What is is they say about complacency and change?  Oh, yeah...

We added in vest treatments, 30 minutes of shaking twice a day, not to be done with a full stomach.  It's been the "on" month with inhaled antibiotics, which means about 20 minutes of hands-on medication administration every morning and night in addition to the rest of his cares.

Then there was the whole lovely experience in the hospital where we found out he has decided not to poop.  And that saga continues.  Yep, we thought we had a good routine in place, but not so much.  This past week, unless he's had a suppository, he's quit going again.  I'm throwing so many interventions at this kid, I can't believe he's not swimming in the stuff.  And you know he doesn't like to breathe when that's happening.

So yep, it's real around here.  Last night found me at Wal-Mart, (with half of everyone else in the world!  Good grief! Loooooong lines!) trying to get some pedialite and prune juice to keep this kid home.  Yeah, everyone else is buying chips and hotdogs for barbecues, and I've got a cart with clear liquids and some of the nastiest juice ever made.  I'm telling ya, it's a party.   But hey, I'm getting a little tired of bagging this kid multiple times a day.  Between his digestive issues and his asthma, breathing doesn't seem to be too high on his priority list.  But it is on mine.  You know, kinda like the teenager and the clean room thing.  And yeah, it feels like a similar battle.

So last night we stopped all his food and put him on the prune juice/pedialite.  I pulled out (almost) all the stops on his albuterol.  He's now getting breathing treatments every three hours and he's actually looking pretty good again.  He still hasn't had a dirty diaper and breathing always changes when he wakes up, but I'm back to having a little wiggle room on the oxygen.  So hey, we keep on going.

Best Boy Band Reunion Tour
But just like any other parent, sometimes I want to throw in the towel, and I was there last night.  You get tired of that toddler who won't eat dinner and thinks the living room wall is the canvas for his latest masterpiece, exasperated with the sixth grader who hates practicing the piano, and totally fed up with the teen who can't seem to put anything away.  I think everyone does.

And then we go online with social media and see either the picture perfect vacation or people bashing another parent for an accident or an honest mistake that they're going to feel the repercussions of forever, while the rest of the world forgets them 30 minutes later.

But if we really stop and examine our lives, we see that toddler gives the most amazing, sticky armed hugs with "I love you the mostest, Mommy!" just when we need it.  The sixth grader will make you belly laugh with the silliest pun.  And that teen? Well, he asks what he can do to get dinner going, and then puts it all together.  And you realize that maybe you're actually doing okay with the whole parenting gig.

And you know what?  Real life isn't like we see on social media.  It's messy, it's hard, but it's also really, really good.  That's why we do what we do, we fight for life, for love, for the chance to make our mark on the world.  We figure out how to make things happen. And hopefully, along the way, we have fun and laugh.

And PS:  This isn't a "oh woe is me, life is hard post".  No interventions necessary.  Like I said, just keepin' it real.  You know, therapy.

"Real life isn't just about pain, it isn't just about joy.  
It's a harmony and melody of both."
Jonathan Peterson

Tuesday, June 14, 2016

Happy Birthday! Six Years!!

AAAAAnd he's done it!

Six years on this earth, living, loving, enjoying his life.

When we first got the results back confirming Trisomy 18, I told my doctor that I didn't have any concrete reasons to know this, but I felt that his life would be longer than many others.  It might be measured in weeks or months, but I felt it would be more than the minutes or hours that some have.  She replied that somehow, she also felt that.

And here we are, six years, 72 months,  312 weeks later.  There have certainly been ups and downs.  And we've pushed the envelope on more than one occasion.  But he's here, with us, playing right now in the next room while he watches a video on a tablet.  And I'm so, so grateful.

Yesterday was pretty low key.  That's okay, it's still good.  A few friends came over including one we haven't seen in over 20 years.  Talk about catch-up time.

Sweetaly Gelato made him an incredible cake.  I'm not sure I've ever had a moister cake.  Almost melt in your mouth moist.  Seriously yummy.

And of course, we sent balloons off to his angel friends.  He sent his last, and watched until it disappeared.  I hope they find them.

Happy birthday, big boy.  Thank you for blessing our lives.

This is the day the Lord hath made.  
Let us rejoice and be glad in it.
Psalm 118:24

Friday, June 10, 2016

My Posse

Last night a group graciously made dinner in the Ronald McDonald Room.  It seems like such a small thing to many of these people who do this, but it is a welcome respite, a much needed break, for families in the hospital. (If you'd like to do this, click here and look for "adopt a meal."  It's simple and there is so much need.)

It gives us a chance to leave our small, one-room torture chamber where our child lies ill, injured, needy, and collect ourselves.  It gives nourishment and strength as we return to bedsides.  It lets friends gather.

Last night at dinner I sat with three other friends, and I'm so glad to call them my friends.  We commiserated, we hurt for each other.  Every one of the four of us are also part of the hospital's Rainbow Kids team, the palliative care team.  Each of us has had "the talk" several times with the doctors.  You know what I'm talking about:  the "we've done everything there is to do, here's the reality of what's coming."  It hurts, plain and simple, deep down in the soul.

BUT, we also laughed, teased, exchanged ideas, shared tips.  Joked about how if you got to ride in a helicopter to the hospital, you should get to ride in one back home, too.  Compared nurses, we've all had most of the same ones. We got pretty loud.  We ate toooo much (or at least I did).  Finally we decided that we probably ought to get back to our rooms.  One mama peeled off to head down the stairs to the PICU and the rest of us continued to our unit.  Except we're all on the same unit.  We were laughing as we came around the corner, the three of us together, and right at shift change, and kinda startled the nurses.

"Wait, you three all know each other?"  Oh, yeah, and we go way back.  Back to long nights, scary procedures, rough days.  They said we looked like a posse coming around the corner.  And maybe we kinda are.  We search out the best ways to protect our kiddos, we stand shoulder to shoulder.  And we support each other.

See, while those who work here know the hospital from a professional standpoint, we know it differently.  They go home at the end of a shift, and work a few shifts a week. We move in here, stay here, day in and day out with our child.  They went to medical school, we go through the refining fire of parenting a medically fragile child, a child for whom we are their only voice.  Those things bond you.  Are we all the same?  Not a chance!  But we are definitely connected.

On the Aaron front, we get to go home today! YEA!!  And his birthday is just around the corner on Monday.  Because of this recent "vacation" it's going to be very casual.  But we'd love to have friends stop by for some cake and to wish him happy birthday sometime between 7-8:30 on the 13th.  We are so, so grateful to still have our little bug with us after six years.

Posse:  The faithful band of friends whom you call during times
of merriment, crisis, boredom or adventure.

Wednesday, June 8, 2016

Still Waiting...

Someone decided Superman
needed to be taking precautions.
I don't know if that means he's 
sick or he's taking care of 
someone sick.  
But it made me laugh.
Last night they gave Aaron a mild stool softener.  Today they gave him a stronger, faster acting one, plus a laxative.  They're supposed to work in 30 minutes to three hours.  That was mid-morning.  Guess what?

Yep, still waiting.  No poop, lots of oxygen.

BUT it also explains the heart rate fluctuations as well.  And him sleeping more.  And it's a whole lot better than it being his heart.

See, when you're told your child is "incompatible with life" you cling to hope, but there's also the realistic side.  When you can see on studies that his heart resembles a piece of swiss cheese (okay, not quite that bad, but still not good) you worry about that.  And when his tattered lungs sound good, you look for the next most likely thing:  that big (yeah, it's bigger than it should be) ol' organ right next to it.

And the doubts and fears creep in again.  You do what you can to push them away, but part of the trouble that comes with this life is you also know when you're running out of options.  With his heart, we're pretty darn close there.

So we're watching and waiting and hoping here, but really not too worried.  It will "move."  Eventually.  If not by tomorrow, they'll use stronger meds.  There are lots of options for this one which makes me feel much easier about things.  He just likes to take his own sweet time to do things.  I guess he doesn't realize it would be much easier for me if we could just do them from home.  That's okay.  We'll get there.

And Superman?  He's got nothin' on this kid.

"Sometimes real superheroes live in the hearts 
of small children fighting big battles." 
Author Unknown

Tuesday, June 7, 2016

Not Yet...

He's still partying up here, still pulling off his leads, and laughing and playing.  And still using lots and lots of oxygen.

BUT we've ruled out heart issues, which makes my own heart beat more easily.  See, there aren't many more options for his poor tattered heart.  However, his labs look good and his echo was even (a little bit) better than his last one.

Now we're looking at his digestive system.  Many, MANY kiddos with trisomy struggle with one aspect or another there.  Other than the "breathe, suck, swallow" sequence he never quite figured out (maybe because it was so hard to just breathe, period!) Aaron hasn't had issues there.  Except maybe now he does.  They just did an abdominal x-ray and yep, he's got a lot of "stuff" in there, "down there" and it ain't moving so well on it's own.  Not yet.  Which could very well explain what's happening.

They're also going to order some more bloodwork to make sure he's got enough red blood cells to carry that oxygen around, and maybe even a lung CT to check for scarring and progression of his lung disease. And I'll even get to visit with the dietician.  I called in on Monday and made an appointment for two weeks out.  We'll just take care of that while we're already here.

So no real answers, yet.  But definitely some reassurance about what it's not.  We won't be going home today or even tomorrow.  We're not there, not yet.  But it will happen.

It is not the strength of the body that counts, but the strength of the spirit.
J.R.R. Tolkien 

Monday, June 6, 2016

My Crazy Rainbow Zebra Kid

In the medical world, they tell you that when you hear hoofbeats, think horse not zebra.  Except my child is a zebra.  And not just any ol' zebra, he's a rainbow colored kind of zebra.  Yep, he's that rare.

See, Trisomy 18 occurs in about 1 out of every 6000 to 8000 live births.  And of those, only 5-10% turn one.  He turns six next Monday, one week from today.  Like I said, rainbow colored zebra.

Apparently EKG stickers tickle.
And today he's really putting us through the paces.  He's needing a lot of oxygen, still.  And while we don't know exactly the whys behind it, when he's digesting food, he needs even more!  I can't remember if we bagged him once, twice or three times yesterday.  Today it was twice by noon.  Each time seems to have been in conjunction with a meal.  Otherwise he's looked good, in fact, fantastic.  He came in laughing, but on eight liters of oxygen.  He was all sorts of "helping" as they tried to hook him up to monitors.  He wanted to watch as they did an EKG and was fascinated by the printout.

Watching his printout.
They pulled a viral panel sample, a blood gas and chest x-rays as well.  All were perfect.  And yet, his oxygen needs climbed some more.  At one time he was on 12 liters although he's settled back down to ten.

Catching a quick power nap.
So for now, we wait.  The prevailing thought right now is that his heart is acting up.  I'm grateful that at least we know he's got normal heart rhythms, but his pulmonary hypertension may be out of control.  Yes, again.  And worse.  The crazy part is that his heart rate is low, quite low for him.  As in, sometimes, occasionally when sound asleep we see it this low, but he's awake.  That bothers me.

Anyway, if we can rule out cardiac issues, or at least any new cardiac issues, we'll probably look at his digestive system.  He's never had any trouble there beyond the inability to get that "suck, swallow, breathe" sequence down.  But things may be changing.

One way or another, he's teaching us new things, still, again, always.  And here I thought school was out for the summer...

Rare is the union of beauty and purity.

Sunday, June 5, 2016

Serving Others

It's been a busy week, but a good week.

Jonathan came home from Argentina on Wednesday.  I did just fine until the screen said the plane had landed.  Then the tears started pricking my eyes.  By the time he came down the escalator, they started in earnest.  I held him for so long...  It's the first time in over 3 1/2 years all our children have been together.

Then there was the usual of work schedules, soccer try-outs and various parties, play practice, marching band practice, and just "life" things.  Friday night we were able to go to Dream Nights at the Zoo.  It was so wonderful to see many friends OUTSIDE of the hospital having fun.

On the Aaron front, he's doing "okay."  We're maintaining outside of the hospital, but in large part that's due to the many "tools" I now have in the toolbox.  I was thinking this morning that it has even been a couple of days since we've had to "bag" him, or help him breathe.  Yeah, never should have let that thought come together.  About ten minutes later I had to do just that.  And he's been dicey since. Fun times.

But the past week some thoughts have been weighing heavy on my mind.  It's taken a while to percolate.

Last Sunday in the early morning hours when everyone else was asleep I was going through emails and texts and found one that came in several hours before.  It asked for prayers for a young man named Beau Richey who had been in a ATV accident.  He wasn't doing well.  The name was vaguely familiar, but I couldn't quite place him.  I started doing some looking around, and his face was also familiar.  It was when I searched my own computer that it came together.

In April, a scout group our family is heavily involved in put together an Eagle Scout Banquet honoring the young men who had achieved Eagle in 2015.  Part of the program involved an eagle, Freedom, and then pictures for each boy with the bird.  One of my jobs was photographer.

A young man came through the line fairly early.  He was wearing his scout shirt, but also a jacket over it.  I probably should have asked then if he wanted to take it off, but it was a busy night and I didn't.  Towards the end, his mom poked her head back in.  "Could we possibly do another picture, maybe without his jacket on?  And if it's a problem, no big deal."

I hesitated, at least in my mind, for a second.  I was beyond tired, exhausted, and ready to be done with the evening.  Freedom was hot, panting a little bit, and I'm sure his trainer was tired of holding him.  But what came out of my mouth was, "sure, why not."  I mean, it was only going to take another minute or two.

That young man was Beau Richey.  And he didn't survive his accident.  Shortly after I saw the text (and I still don't know who it came from), messages started coming out saying he hadn't made it.  I'm so, so glad I said, "sure, why not."  I'm grateful I could give that gift to his parents.

But here's the thing.  It was such a small thing, and I almost said no.  It shouldn't take someone dying or another tragedy, to make you glad you did something for someone else.  Even if it's a little thing, maybe especially if it's a little thing, we need to take every opportunity to brighten someone's life.  I almost didn't.  I'm glad I did.

May you soar with the eagles, Beau.  I'm glad our paths crossed.

How wonderful it is that nobody need wait a single moment 
before starting to improve the world. 
~Anne Frank