Aaaand, We’re Back

Sign outside Aaron’s room here.

Well, it was a good run while it lasted.

We were six weeks, six weeks! from the one year anniversary of our last admit.  (July’s CT doesn’t count in my book, less than 24 hours.)

I thought we might make it, but nope.  He’s here.

It started last week, about Halloween.  He was tired, so tired.  And his diapers were loose.  And his heart rate was higher, about 20-30 beats per minute higher than normal.  No fevers, not yet.

But he pretty much slept almost round the clock. He’d wake up for a little bit, and go back to sleep.

By Saturday, I told William that if it continued, I was calling his doctor on Monday.  But then Sunday came.

Sunday was awesome!  He woke up laughing.  He played, he talked, he teased people.  He didn’t sleep much at all, just a really short nap before dinner.  I figured everything was good again.

Monday morning though was a different story.  I woke up and found his bedding and clothes in a plastic bag.  What?  When I opened it, I realized why, and was grateful his nurse had bagged them.  He’d had a massive blowout during the night, and then another smaller runny diaper before morning. His heart rate was up again. Not good.

His nurse texted me about 9:30 and he was running a fever, very sleepy.  He used his computer to say he was tired and sad and cold and happy.  (Yeah, I think this kid is always a bit happy.). Obviously, things weren’t going well.  I picked them up from school and tried to feel his belly when I got them home.  He was guarding, tensing against pressure, so we made an appointment with his ped.

And they sent us up here for a work-up.

The reassuring part is that with his ultrasounds and x-rays, it didn’t look like we needed surgery, which was my biggest worry.  Appendicitis is kinda a long shot as are some other intestinal issues like malrotation and that kind of thing.  But the consequences of just assuming it’s not that can be catastrophic.

There is something going on, and we’re still trying to figure it out.  It might just be an intestinal virus.   He’s still so very tired, although he did finally wake up about two this afternoon and start playing.  We put him on gut rest with only slow running Pedialyte for until mid-day and then gave him half Pedialyte and half food.  We’ll continue that for the rest of today and try to restart his normal food tomorrow.

It’s looking like this will be a shorter stay. I hope so.  And I’d really like my happy, interactive, silly bug back.

“Sometimes superheros reside in the hearts of small children fighting big battles.”

Uncle Aaron!

I'm sitting here writing with my arms full (almost) of baby girl.

It's "almost" because she's a very tiny, not quite six pound bundle of precious.  Miss Linnaea Mae joined her parents a few days before her mom's birthday in October and is the cutest little thing you ever saw.

And Aaron?  What does he think?  Well, we introduced the two of them when she was about ten days old, and he didn't seem too into her.  But the next day at school?

Teacher asked how his weekend went, and instead of using the page he was supposed to for answering, he navigated away from there, through two other pages and started talking about meeting a baby, and it was a baby girl!

Today at church, he continued talking about the baby, asking about the baby, where is the baby girl.  Yeah, I think he's impressed.

He's using his computer more and more.

Last weekend, he had all of us cracking up.  He was, too!  He was telling us,
"tomorrow at this time it will be Monday,  Terrible!"

And then he started calling out countries, "Puerto Rico, Cuba."  What?  Andrew mentioned that he wanted to go to China and someone else suggested that with the tariffs and all, they might not be so fond of us right now.  And Andrew replied, "Yeah, but pandas."  Aaron chimes in with "I love China!"   And he would laugh hysterically after each comment he made.

You know how you can laugh so hard you cry and can't breathe?  Yep, that was Aaron.  And so, yeah, we had to use albuterol because he literally couldn't breathe.  Silly kid gave himself an asthma attack, and acted like that was funny, too!  Sigh...

I've said it before:  He's a nut.

“A baby is God’s opinion that the world should go on.” 

—Carl Sandburg

Processing the Lone Peak Lockdown

This blog is mostly about Aaron, but it's also about me.  It's my therapy.  It's how I process things.  And today, it's not "Aaron" I'm processing.  It's me, it's the rest of the family, it's our community.  This is long.  You've been warned.  But I need to get it organized and out of my brain.

Yesterday was a pretty typical day, mostly.  Dad and Andrew went off to the high school. Joseph went to work.  The school nurse arrived, I gave report, and Michael and I went to the middle school where I was teaching 7th and 8th grade history to classes that had a reputation for "high energy."  Yeah, they do, but they're also good kids.  I just have to stay on my toes.

We had a potluck lunch, lots of fun, and for the next few hours, something one of the teachers said was on replay over and over in my brain, in the background of everything that was in the front of my brain.  "I'm just so happy.  This is a good day.  This is a good day."  And I agreed with her, although I was a little bit on alert because I knew I had to really stay on top of things for the last two classes if we were going to get anything done.

And so I went back to class.  It was 12:05.

The bell rang (sorta, it's having issues) and I called the class to attention.  "Put away the phones, listen up."  And called roll.  We talked a little bit, some jokes and kids were a little goofy.  It's right after lunch.  They're in 7th grade.  And it's Friday.  Whatever.  Passed out the maps they were working on and explained the next steps after they were done.  Reiterated the instructions a few more times for the ones who weren't still quite "with us."  Typical start of class.

As I got things rolling, I went back to put in the attendance and glance at my phone. I do it many times a day, very briefly, just to make sure there's no questions about Aaron's day, especially since he'd been a bit "on edge" himself this week.

And there are texts, multiple texts, to me from Andrew who's a junior.  And one group text to his siblings from him.  I read them.

We're in lockdown

Might be a drill though

Nevermind the student council said its real 

 There is a person in the hall with either an ax or a gun

 I quickly click over to the family one, and he's saying the same things.  It's hard to breathe. My husband and son are over there!  I'm here, with 30+ students of my own, many of whom have siblings there, too.  And they can't use their cell phones.  My initial thought was, at least William and Andrew are together because Andrew has his dad's class last, and if Andrew is texting, they're both okay.  I tell him I love him and to be safe.

I call the middle school office to find out if they know anything, knowing that they'll be one of the first called to help staff any reunification centers if they're needed.  They only know what I know.

I field a call from a frantic child of mine, wanting to know if she should go over there, she can, she's on her way.  I tell her, "no, there's nothing you can do.  You can't get to him, Dad's there too, there's literally nothing you can do until we know much, much more.  Stay at work."  I know other siblings are freaking out, too, but there's nothing, nothing any of us can do except wait.

Then I look at the clock and realize, it's lunchtime over there.  The bell rings at 12:09, four minutes after I started my class.  They're not in 4th period yet.  I frantically text back asking Andrew WHERE he is, and if he's safe.  He's still in Chemistry, the call came in just before the bell rang.  Okay, I know exactly where he is, but where's my husband?  Is he okay?  I can't call or text him because his cell phone is dead.  Because, of course.

He actually called me a little later because he wanted me to try to check in with Andrew.  I was able to tell him we'd texted and he was okay.  By then, there was a huge police presence on campus, and no sounds of disturbance.

In the meantime, I've got a room full of kids who are picking up that something's going on.  When they ask me what's happening, if I'm okay, I tell them I think I am.  There are some rumors going around, but they don't involve Timberline.  It's elsewhere.  If they turn out to have a basis in reality, I'll let them know.  Right now, all I have are rumors. When staff comes in to check on me, and make sure I'm doing okay, I tell the kids what was happening.  Told them they could text Mom and Dad and tell them nothing was happening at our school, and one text to a sibling if they were at the high school.  And we tried to keep working, mostly.

I was taken back almost 20 years ago to a March morning when I was driving home on the freeway.  The radio was on, and the program was interrupted by breaking news. "We've got word that shots have been fired at Santana High School."  "We don't have details yet, but we're hearing that shots have been heard at Santana High School."  I didn't have kids there.  It wasn't our high school and my oldest was still in grade school.  But I knew Mrs. 2nd Grade Teacher at our school did.  Her kids were there.  I rushed to our school and went into the office.  They hadn't heard yet, and while it was horrible, weren't sure how it affected our little school.  I explained, and eyes widened as they started moving to put things in place to let Mrs. Teacher know and cover her class.  Her son was okay, physically.  But he was in the classroom across from the bathroom where students were killed.  He was so close. And frankly, neither of them were "okay" for a long time.

And while I'm trying to teach, maintain my classes, quickly checking Twitter and social media for updates, this keeps going through my mind, along with the "I'm just so happy.  This is a good day.  This is a good day." playing on loop behind everything.

And my students?  My high energy students?  They're awesome.  I relax the cell phone rule, but tighten my perimeter.  I told them, we're safe, we're not in lockdown, lockout, or anything else.  But I can't do a thing about what's going on at the high school, so they're going to have to put up with my paranoid mama mode and understand, they're staying where I can see them.  It actually made class work a whole lot smoother without constant requests for bathroom and drinks.  And they worked, and they checked in with me, and they really, really tried to be so good.

It all turned out to be a false alarm.  There was confusion about the call that came in that said "a Highland High School."  I wonder if the caller was nervous and said, "uh, Highland High School."  We're the only school in Highland, but Highland High is in Salt Lake, and from news reports, someone saw a person walking into that school with what looked like a weapon.  It turned out to be the vending machine service man.  Sigh...

But really, so very grateful for all the response, for the efficient manner (yes, it took over 2 hours, but we've got 2500 kids!) of clearing things, for all the notifications that went out through district notifications and a district spokesman's social media.  It was a nerve wracking, horrible two hours, and then another before we were all home again together.  But we did all come home.  We were all here.  And everyone else got to go home, too.

And I told my students, every time, Every. Single. Time I go into a classroom, I look around and figure out what I'm going to do if the "what if" happens.  I hate that I do that.  But I do, and I will, and hopefully I never have to actually implement it. Because while they're in my classroom, they're my kids.  And I will do everything I can to keep my kids safe.

Lord, I ask you to protect my kids:

Physically, Spiritually, 

Emotionally, Mentally,

And in every way.

Psalm 46:1

P.S.  Aaron is doing pretty well.  There have been some mixup in medications this week, and he's decided he doesn't like the food I was giving him, and the weather is changing.  But he's doing okay. We're moving forward, and maybe tomorrow or so I'll post about him meeting his new little niece.  Had to get this processed through my brain, first.

A Win!! (Finally!)

Lately it seems like everything is a fight.  Fight for coverage, fight to oxygenate.  Fight to get students to focus, or at least not cause problems.  Fight to figure out dinner, homework, schedules.  Fight just to get moving and out of bed.  No, I’m not depressed.  It’s just sometimes overwhelming.  Being a special needs mom is a full-time job in and of itself, and then I work full-time on top of that. Plus just all the day to day aspects of volunteering, helping other kids, and life.  It’s hard!

Our most recent “fight” has involved Aaron’s eye glasses. His appointment was last April.  Yeah, six months ago. But it took me a month to then get him in for measurements and I found that his coverage only allows for new glasses every two years unless there’s been a drastic change in prescriptions.  His two years were up in June so why fight? Made sense. I called in June and got the ball rolling, I thought.  

Called back the beginning of August, hoping they’d be ready by the time school started mid-August.  Um, nothing. NOTHING! Haven’t even submitted to insurance because “they won’t cover them anyway, not the specialized ones he needs.”  Really?  Let’s try anyway.  Call back a month later (I got busy, wedding, school starting, you know...). ”Nope, my supervisor won’t let me even ask because it’s a waste of time, they never cover them.”. 

So I start making calls, trying to find a glasses distributor that is a provider for his insurance.  There really isn’t one that will submit what we need without us paying for them ourselves because again, “they never cover them.”  I call the doctor’s office to see if they will submit the forms since the glasses company (GC) won’t.  They agree to write the letter and send it in.  But when I call insurance, they won’t do anything until they get the form from the GC.  I finally go all the way up the line and tell the GC that I really need them to cooperate!  I don’t care if it “won’t work” they’re the only ones with the codes and prices and I need the one-page form filled out!  Fine, if you really want it, we will, but we (GC, not the insurance) need all the doctor’s notes and letters before we even start.  

Game on.  Here’s the thing: we are asking for a lot for a typical 9 year old, but Aaron isn’t typical.  He doesn’t care that glasses break, so his lenses need to be unbreakable.  He can’t “take care” of his frames, so again, they need to be flexible and unbreakable. His whole issue with “breathing is optional?”  Well, it’s even more interesting in the sun because he’s so light sensitive.  So we need transition lenses, or he wears non-prescription glasses when outside.  Not optimal. 

So I figured if I was still fighting five months after our appointment, I was going to hit them with everything I had right from the start. Not only did I arrange for a letter of medical necessity from the eye doctor, I got one from his developmental pediatrician regarding his development and one from his pulmonologist about his poor lung function.  I think I may have overwhelmed everyone.

But guess what?  It worked! And fast!!  Paperwork was submitted Ten Days Ago and I got a call yesterday!

Believe me, when I heard the message on the machine that the GC had an “update” I was discouraged.  It was way too fast for good news.  Frankly, initially I thought about postponing the return call. It was already almost 5 pm, but I figured I could do it then or it would get lost in the shuffle, so I did, and yeah, they were closed.  This morning I had a first period prep so I tried again.  

And THEY APPROVED ALMOST EVERYTHING!!!!  The only thing they didn’t, and flat out won’t, approve is the scratch-resistant coating.  $30.  I couldn’t believe it!!  

It’s still another 4-6 weeks before he’ll have his new glasses, but it’s just waiting for insurance to process the payment (since they’ve already approved it) and then the manufacturing. 

We get flexible frames, poly-carbonate lenses, transition lenses, and glasses that will help him see again.  

And the fight, at least this fight, has been suspended.  

Which is good, because you can only fight for so long before you just give up on things, and I was almost there.  

And I'm no quitter, but I'm tired of fighting. 

Blake Shelton

I Struggle When He Does Well

I’ve struggled recently. I finally was able to put into words what I think is going on. 

Wait for it....

Aaron is doing well!  

Yeah, that’s what I’m struggling with.  Sounds crazy, huh?

But I found myself the first few weeks of school anxious, cranky, not sleeping, on edge.  You know, classic PTSD symptoms.  Except it’s anything but “post”.  It’s very much “current,” which I’d like to keep that way, thank you very much. 

But he was doing great!  Except that he’s not pooping well (different story, TMI?) he looks better than I’ve seen him a LOOOONG time.  But there I was.  Me.  Not doing well.  

I finally was able to articulate it one day when William asked me how I was doing.  Not how my day went, not how something else was going, how I was.  And I realized.  I wasn’t doing well at all.  And as I talked through things, I realized what it was.  

I’m not used to him doing well for so long.  I’m waiting for the “other shoe to drop.”  I’m waiting for the emergency, the sudden illness. He hasn’t been hospitalized since that awful pneumonia last December. I don’t know how to cope anymore with “normal life.”  Crazy, huh?  

Like I said, he’s doing well.  He’s all sorts of “helpful” with his trach and g-tube cares.  He continues to try to take his diaper off.  Don’t blame him, but nope, not happening.  He may be relegated to pants and onesies all the time.  

He’s using his computer to talk more and more.  The other day he said, “I have a plane.  I have a boat.  I have a bus.  I have a taxi.  I do NOT have a wheelchair.”  Um, really kid?  Wishful thinking.  The next day he told us that something was wrong with his wheelchair.  He seems to believe he needs something with more oomph.  Sorry, not yet.  He’s got two more years before he gets an upgrade.  

He got a haircut and bath last week in preparation for school pictures today and actually tolerated both well.  He really enjoyed his bath, trying to grab the shower head and point it at me.  Um, your bath, not mine, kiddo.  

We’ve also had some “fun” with his van.  Two weeks ago the battery light popped on while I was driving, but then went off again after about two minutes.  It made me nervous, but I couldn’t find anything.  Internet suggested that if it went on and then off it might be corrosion on the battery or a loose cable, so we checked those out.  Yeah, not those. 

The next day we were on our way to see Matthew in Joseph and the Amazing Technicolor Dreamcoat and it came on again. No bueno!!  And we had Aaron with us. I was more than a bit nervous. One of my big fears is getting caught on the side of a road with Aaron in his wheelchair. When the radio died, I killed the AC and prayed, hard!  It died just as we pulled into a spot at the theater.  Couldn’t have been better timing for our location.  But still, we were 20 miles from home with a kiddo who needed specialized transportation, and I had no interest in “looking on the positive side of things.”  I was worried, and ticked, and anxious, and...  Well, you know.  Fill in the blank with some kind of negative emotion.  It works. 

Plus this was the fourth time in about six months that his van has gone down.  Frustrating!!  

Really, it could have been so much worse. We called Deborah and Bronson who got his carseat out of my closet and brought the big van down for us.  We got him home. We got the minivan in. It was the alternator and a friend did the work for us as soon as we got the part. And it’s running again.  But still, remember that PTSD?  

I was really struggling to work through things.  I’ve recently been asked to lead the music at church, and the sacrament hymn that week was “Thy Will, Oh Lord, Be Done.”  I did NOT want His will, I wanted mine. I didn’t want to deal with this, I wanted things to all work perfectly.  (yeah, in an imperfect world, my life should be perfect, right?) But as I went through the hymn, the final line, “And pray for strength that we may say, as He, Thy will, Oh Lord, be done,” it touched me.  And I began to pray for the guidance to begin to accept, to “be still” and “let God.”  Or at least to want that. 

Last week, another one kinda finished the reminder.  “When dark clouds of trouble hang o’er us, and threaten our peace to destroy...”. Yeah, that described what I was (still) feeling.  A reminder that there are rough times, and I’m not expected to be happy about them.  I can feel, I can hurt, I can struggle and it’s okay.  But “we doubt not the Lord, nor His goodness, we’ve proved Him in days that are past...”.  A friend told me years ago that “our God has big shoulders, and we shouldn’t be afraid to use them.”  It’s okay to not be okay, and it’s also okay to hope for better times and better things and I know where to find my strength.

It was almost like I needed permission to struggle, and a 2x4 to the head to help me remember.  

For now, I think I’ve rediscovered my equilibrium, at least for a moment or two.  Aaron continues to do well, although we don’t take him off the vent at all.  He laughs, he plays, he cracks us up with his quirky ways and comments.  

And I’m sleeping again, mostly.  

“Some people's lives seem to flow in a narrative; mine [has] many stops and starts. 

That's what trauma does. It interrupts the plot. 

You can't process it because it doesn't fit with what came before or what comes afterwards.”

― Jessica Stern

Youngest Sibling Tricks

The youngest sibling...

Sigh...

Actually, I have no personal experience with this.  I'm the oldest.  So is my husband.  But we certainly have a youngest, and he's a nut.

The way our family has worked, the younger kids get hauled around to all the other activities.  Too young to be left on their own, so they come along, and along, and along, and just get fit in wherever.  And they make sure no one forgets about them.

So this summer wasn't quite "relaxing."  Oh, it was filled with some awesome things.  But a couple times lately I told my husband that school needs to start so I can go back to full time work so things can settle down.  Sounds weird, I know.  But still...

We had a missionary homecoming, a bridal shower, a temple sealing, a wedding dinner, wedding, reception, and of course, the requisite scout camps, doctor appointments, soccer tournaments, and everything else!  Whew!  See what I mean about needing school to start??

So then there's Aaron.  Yep, the youngest.  Gotta make sure we don't forget him, right?  Gotta pull out that bag of tricks.

His latest?  Undoing his diaper and taking his g-tube button out (twice in three days!).

Yeah....

So. Much. Fun.

Stinker.

But school HAS started.  We're going with the "first week of school" pictures 'cause Mom forgot to get one of the kids yesterday.  There's only three this year.  You'd think she could get it right.  Oh well.

Here's to a new school year.

And learning new (good!) tricks.

He's a nut.

"I'm the youngest.  The rules don't apply to me."

New Plan: Making it Work

A week ago Aaron went into the hospital for a lung CT scan.  Prior to his pneumonia in December, he was often off the vent up to eight or nine hours a day.

Since then?  Um, not so much.  Like most days, not at all.

I was hoping that with the new trach, all our problems would be solved.  (See how I work?  New equipment fixes everything, right?)

It DID fix a lot of issues, but not that one.  Some days we could do an hour or two, most days we had to throw in the towel after ten minutes.

Is it disease progression?  (Somehow that seems to be a common phrase.)  Or something else. 

Well boys and girls, it might be disease progression but there's definitely something rotten playing into it as well.  Something sticky and nasty and gross, and it's stuck in his lungs.

CT scan

Junk.  Mucus.  Snot.  Whatever.  And there's a decent chance it's been there since his pneumonia.  And not only is it blocking up individual alveoli, it's also blocking off sections of his lungs, trapping air, which means no gas exchange.  No oxygen in, no CO2 out.  Yuck.

So how to get it out?  Well, that's the rough part.  We've increased his vest treatments to three times a day and also added in something called hypertonic saline.

Normal saline is 0.9%, about what our blood is.  Our bodies are 0.4%.  Oceans are about 3.5%.  And the hypertonic saline we're nebulizing into his lungs?  7%!

Yeah, breathing in salty humidified air that is twice as salty as the ocean.  Doesn't that sound fun?

Um, not really.  And he doesn't like it either.  So three times a day (his nurses do one of them for me) he gets to do this.  He hates it.  I hate it.  He's fine with the vest and the albuterol pre-treatment.  But then the saline starts.  And within seconds, he starts coughing and gagging and retching.  We vent his tummy and he throws up whatever fluids and acids are in there (we do the treatment as long after a feeding as we can).  And we suction and suction and suction as he brings up the garbage that's been hanging out inside of him.

X-ray at Shriners

Did I say I hate this?!?  My poor baby.

But here's the thing.  He does it!  And he doesn't fight it.  He doesn't like it, but he doesn't disconnect, doesn't pull away.  He takes it.  We started this a week ago yesterday.  For the first several days, three times a day, he'd cry when I started the saline, but not before and not after.  Even though he knows it follows on the heels of the albuterol, he laughs and plays through it.  (And yes, he knows it's coming.)  The last few days, he's grimaced, but not cried through the treatments.  And as soon as the saline is done, he's back to being happy.  I mean, As. Soon. As. It's. Done.

How many of us can do that?  How many of us whine and gripe and complain about things we know will happen, have to happen, and then continue the grouse-fest once it's done?

And we're seeing results as well.  We do pull a LOT of garbage out of his lungs each time.  It takes about ten minutes or so to nebulize and we're suctioning pretty much all the time, giving breaks so he can catch his breath.  For the first several days, I didn't see any difference, except in the volume of secretions.  But the last two or three days, we're seeing lower oxygen needs, less sleeping, more vocalizations.  It is working.

We get to continue this until at least the end of August when we see pulmonology again.  It's still not fun.  But we're both settling in, him probably better than me.

In other news, we did his ear CT scan at the same time, but that looked good.  He also had his yearly scoliosis screening this week at Shriners.  The good news there is he's stable.  There's an error margin of about 4% and last year he measured at 44% and this year at 42%.  Now, you don't get to go backwards, but at least it isn't worse, which is amazing because once someone reaches at 28% curve, it's like a stack of dominos that just fall over.  So yay for a good report.

And now to see if I can match my attitude to his.

Attitude is a little thing that makes a big difference.

-Winston Churchill