Thursday, December 27, 2018

Merry Christmas!

Okay, so I'm a couple days late.  Forgive me.

But it was a good Christmas, very good.  Ever since we moved here 14 years ago, our kids have had a slumber party in the basement on Christmas Eve.  You know, all in one spot, easier for the big guy to sneak in and deliver presents, easier for the early birds to roust the night owls.  But this year was going to be different.  We don't "have a basement" anymore since the newlyweds moved in.  But Deborah and Bronson decided they wanted to continue the tradition and invited their youngers to join them anyway. 

The upshot of that is we could still hear the party in full swing when we finally made it to bed.  No worries, Santa still came through even though I think some didn't sleep until almost dawn. 

Aaron had a very good night, and a wonderful day.  He was one of our sleepyheads, awake in the beginning but sleeping through a lot of the present opening.  Santa hit it out of the ballpark with him.  He opened a package of light-up maracas and has been making "music" ever since!  Between that and a little handheld "computer" that Gramma and Grampa gave him, he's been making sure we know when he's awake!

Speaking of computers, we've been working with his school and speech therapist for over a year to try to get him a communication device.  It's an eye gaze computer that will let him talk with us.  And it's coming today!!  Now Mama and Daddy need to figure out how to work it, too.  But this will be such an incredibly important tool for him.  He's been using one at school and apparently had a lot of success. 

Except, he's my kid.  You know, the kid that it really doesn't matter where the teacher puts them?  They still find someone to talk to?  Well, the report is that when they need him to pay attention, they have to remove the computer because that's all he wants to do, use it to express himself.  I guess if I had to go eight-plus years without talking to someone, I wouldn't want to be silenced either! 

All in all, a very good week.  He's home, he's doing well.  Sunday morning was rough, but since then he's done great.  Smiles are even back, most of the time.  (FYI: he becomes kinda sad when on steroids.) 

He is back on the vent 24/7, and will be for quite some time if not from now on.  We'll have to see how his lungs do in a couple months.  Yeah, it will take that long for them to fully heal.  We see cardiology today, trach/vent clinic (ENT, pulmo, special needs, nutrition, respiratory) early January, and neurology mid-January.  Wonder what he'll have to say to all of them... 

"Communication is something we all take for granted."
Miriam Margolyes

Thursday, December 20, 2018

We’re Here! (Home!)

We did it, HE did it!  We made it home yesterday, even in time to surprise Michael and pick him up from school.

So much to do, food, meds, laundry (okay, haven’t actually done that yet).  I can’t find my room, but I did find my bed. Woke up this morning in my very own bed.  Glorious!!

He’s not “all better” yet.  He’s still struggling.  We’re playing with vent settings because sometimes one works better, and other times, another.  One lets him generally oxygenate better, but the other allows him to move the “junk” that’s still in his lungs and get it out.  So we alternate.

He’s still on a lot of breathing treatments and is half-way through a course of steriods.  Ah, yes, steroids.  They do amazing things for his breathing.  But they also make him sad.  Sigh...

But still, home!!

It’s good.

“What is Christmas? 
It is tenderness for the past, courage for the present, hope for the future.“
Agnes M. Pahro

Tuesday, December 18, 2018

Groundhog Day

I didn’t realize it had been so long since I’d updated on our little Superman.

We’re still here, still hanging out, still on way too much oxygen.

Every day seems to go the same way.  We’ve weaned the oxygen down to a manageable amount overnight, and the plan is to watch, try to keep him there, and go home in the morning.

But then the day happens, I guess you could say, “life happens.”  He wakes up, plays, needs more and more (and sometimes more) oxygen.  And we’re quickly back to where we’re maxed out on what the home vent can deliver, much more than we can deliver for any significant amount of time at home.

He’s finished his antibiotics.  He’s pretty much “hanging out.”  We’ve tried increasing his PEEP (the pressure that’s always in your lungs) to see if that helps.  It really hasn’t done much at all.

Albuterol has helped, kinda, but last night we decided to up it to see if maybe it could do more than it was.  He started getting it every three hours instead of every six, with the plan that if it did seem to improve, we’d consider steroids as well.  If he’s not oxygenating because his lungs are reactive (asthma), steroids can also help.  But the downside is that steroids decrease the body’s immune system, making it harder to fight off infection, and easier to get one.  And that goes for both bacterial and viral infections.  (Can I just put him in a bubble?)

Albuterol did seem to help, quite a bit overnight, so now we have orders for a five day course of steroids.  IF he reacts the way he has in the past, we really might come home tomorrow.  Pretty big “if.”

But as William keeps reminding me, we’ll just do what is best for him.  We’ll give him the time he needs, be grateful for the time we have with him.

Last night I climbed in bed with him to sing him a bedtime song.  Big mistake if I thought it would help him go to sleep.  Instead, he took it as a sign that the party was just getting going!  Funny kid.  So we sang for about an hour.  But as I sang the last line of “Edelwiess” I choked up.  I have no doubt that this little boy will bless our home life forever.  I hope we have many more days with him here on this side before he goes “home.”  But I do know he’s ours, forever and ever and ever.  And the lessons he teaches us will be with us just as long.

Edelweiss Edelweiss
Every morning you greet me
Small and white
Clean and bright
You look happy to meet me
Blossom of snow may you bloom and grow
Bloom and grow forever
Edelweiss Edelweiss
Bless my homeland forever
The Sound of Music

Saturday, December 15, 2018

Slow and Steady

He’s making progress.

We’re still here, he’s still not the way he’s “supposed” to be.

But he’s getting there.

Yesterday he had come down far enough on his oxygen to try his home support settings.  They worked, but he promptly went back up on his oxygen.  We also started pulling all sorts of nasty stuff from his lungs.  The thought is that with the higher settings, we weren’t able to mobilize it because his lungs were hyper-expanded.  They didn’t have enough room to really collapse enough to be able to move that junk.  But on the other hand, without the hyper-expansion, he wasn’t able to get good gas exchange.  You know, good air (oxygen) in, bad air (CO2) out.

We didn’t make much progress on his oxygen yesterday, but today has been a bit better.  He’s down to 65% right now, awake and playing.  That’s a really good sign.  Once he can be stable on 60%, we can try the home vent.  Then it’s working our way down to what we can do at home.

I’m a little nervous that we haven’t had any setbacks at all, but I’m also hopeful.  He’s now at day 6 of this whatever it is.  Just because the viral panel was negative doesn’t mean there’s not a viral component.  It means that it wasn’t one of the ones they can test for.  But he’s also switched from IV antibiotics to a g-tube one.  In fact, it’s the yummy pink stuff we used to take for ear infections and such. Too bad he doesn’t get to taste it.

So we’re still waiting.  He’s playing, watching TV, being silly with the nurses.  I don’t think we’ll be home this weekend, but I’m optimistically hoping for Monday.  Maybe not.  We’ll see.  But we’re still 10 days out from Christmas.  I’m confident we’ll be home before then.  Until then, we’ll make the most of our time here.

You usually have to wait for that which is worth waiting for. 
Criag Bruce

Thursday, December 13, 2018

His “Spark” is Back

He’s happy again!  He still needs a TON of support.  We haven’t been able to reduce his oxygen or the additional supports on the vent.  He’s still a pretty sick little guy based on numbers.

But his demeanor, yeah, our monkey is back.  And it’s wonderful.  He’s back to “helping” with diaper changes, suctioning, refusing to stay upright where it’s easier to breathe.  He played pretty much all day, as opposed to yesterday where he just slept.

And I can’t say what a relief this is.  On Thanksgiving I asked William if I was weird because every Thanksgiving I wonder if we get to have Christmas with him.  They’re only a few weeks apart.  But his first Thanksgiving I remember standing over his cradle and sobbing that I just wanted one Christmas.  And we almost didn’t get it.  He was crashing and Lifeflighted from the house the next morning in the very early hours.

Those thoughts ran rampant through my mind on Tuesday night.  It was hard, scary.  I wondered even into yesterday how things were going to play out.  Were we going to get Christmas, only two weeks away?

But today, today is so different.  He’s not better.  He’s got a long ways to go.  How long that takes is anybody’s guess.  We’re almost 48 hours into antibiotics, and they may just “fix” everything quickly. It may take longer.  His pulmonary hypertension could still kick higher.

But Aaron is back.  And we’ll make it back home.  And I have no words to express my gratitude for all the prayers and love and support that have been offered up on his and our family’s behalf.

“A mighty flame followeth a tiny spark.”
Dante Alighieri

Wednesday, December 12, 2018

”Big” Sick

Not even quite sure where to begin this.  It’s all still processing, percolating, or maybe even just trying to avoid reality.  But here goes:

Aaron was a little “off” Saturday afternoon and Sunday.  Almost seemed more like tummy issues than anything.  In fact, by Sunday afternoon, he was doing better.  Totally fit into a “24 hour bug” kind of thing.  Okay, whatever.  He’s a kid, right?

Then Sunday during the night, he started struggling with his sats, and his heart rate went up, too.  He had a low-grade, barely even there, fever.  Asthma?  Probably.  The air quality is pretty nasty, although better in Alpine than down lower in the valley.  But he stayed home from school on Monday, and I figured maybe Tuesday, too.

Monday night was worse, but still, not crazy.  The nurse called me at 1 am because he was struggling so much, but we bagged him while also giving Albuterol and again, low grade fever.  Most important, even though his vitals weren’t awesome, his demeaner was.  I mean, this kid was a nut!  It’s 1 am, the nurse and I are bagging, suctioning, giving albuterol, and he’s laughing at us, grabbing cords, and being oh so “helpful!”

Here’s the sad, ugly truth about family medical life:  We schedule our emergencies.  How twisted is that?  But we do.  Obviously, when it’s truly life-threatening, we drop everything and run, but we also learn how to manipulate the system (our kids?) and cram other things in, too.  I had a work assignment, and they kinda frown on subs cancelling at the last minute, although they also would have totally understood.  I had an appointment in the afternoon that I needed to keep if at all possible.  But that said, I wasn’t sure either of those were possible.

When I went to the school, I let them know that things were pretty dicey at home.  I appologized to each of my classes about keeping my cell phone on, and told them that I would only answer calls from my nurse or home. I checked in through the day via his camera.  He was sick, we moved to giving him albuterol every hour, but still, he was (mostly) “okay.”   In fact, his nurse sent me this video of him being “sick.”  He’s being bagged, but seriously, does he look like he’s in trouble to you?

And my students were so sweet.  I even had a couple come back later in the day to check and see if I was still there and ask how he was doing.  But then Holli (his nurse) called as school got out.  He was in the upper 60’s and not coming up well even on 15 liters being bagged.  Michael and I ran (literally) to the car and raced home (five minutes away).  I debated about whether to call her back and get the ambulance on the way.  But when we got there, he was back in the mid 80’s, where he hangs out anyway, and he was moving back to the ventilator.

We watched him for a little bit, and I asked her what her gut was saying about things.  She said he could probably hang on until I got back at 6 or 6:30.

Don’t get me wrong, I knew, knew, he was going to the hospital and going to the PICU.  But you know, that whole “schedule the emergency thing...”

I did leave my bag packed, told her what needed to happen if he just wasn’t going to last, let Andrew and Michael know what kind of help she would need, you know...

Well, he did “okay” until we got back home, and then he was DONE!  He dropped again into the mid-60’s and we had a hard time getting him into 70’s.  I told William that this was going to be a fast “throw and go” when the paramedics got there.  We weren’t going to be messing around.  In fact, with him hanging in the lower 70’s, I worried that they might call for the chopper.  He did manage to get to lower 80’s by the time they were there, but we still moved pretty quickly.

We got him loaded and took off, and he dropped again.  And stayed down.  Cranked the oxygen up, suctioned, started albuterol continuous.  They hit the lights and sirens.  And we worked him.  We came in on 20 liters of oxygen, bagging, 28 puffs of albuterol one minute apart, and blue-purple lips.  Sats in the mid 50’s to lower 60’s.  Fever  of 104.8.  Yeah, almost 105 degrees.  I don’t think I’ve ever seen my little boy quite this sick.

And here’s the thing:  when someone comes in that sick, it’s a crowded room, lots of things going on, lots of people.  And they work together really, really well, which scares me to death.  I know for a lot of people that calm and smooth process is really good.  But when various specialties work like that, it’s because they’ve practiced, because when it’s critical, they have to.  Lives depend on them.

We had two IV teams.  This kid who can take an hour plus to get an IV had two large ones running almost immediately, and one had a high-powered antibiotic going through it.  The RT had him on a vent, off the vent and on an ICU bag, and we changed out his trach within minutes.  The doctor, three nurses, two tech were all in there as well.  X-ray was right outside the door.  It was scary, terrifying, and heartbreaking.

The upshot of it all is that he came back negative for viruses (at least the ones they can test for) and positive for a right-sided pnuemonia, that we’re assuming is bacterial based on the negative viral panel.  They’ve pulled blood to test for bacteria and the antibiotics he’s on will cover those if he’s got sick blood.  Sepsis is a real concern, and it’s not something you ever want to play around with.

All in all, he’s a very sick little boy.  On the positive side of things, he’s still on the ICU Trilogy (the ICU version of the vent we use at home).  We’ve got lots of room to escalate things if we need to.  The down side?  He’s pretty much maxed out on it, he’s still pretty lethargic, and it’s going to get worse once he does wake up.

He’s not “helping” with any of his treatments.  He’s leaving his cords alone.  When he’s awake, all he wants is to go back to sleep.  So he does.  We’ll let him sleep as much as he wants to, and hopefully it is a healing sleep.  It’s almost Christmas.  Our bug needs to get better and come back home.

“Prayer is an act of love; words are not needed. 
Even if sickness distracts from thoughts, all that is needed is the will to love.”
Saint Teresa of Avila

Sunday, December 9, 2018

Road Rash and Redemption

Ever have those times when you're on the hamster wheel, running as fast as you can, but feeling like you're keeping up okay?  And then something happens....


It's been busy around here, but when hasn't it been?  Aaron's doing well, as well as can be expected with weather changes and asthma and such, but you know.  He's pretty good. 

School, work, breathing treatments, meals (somehow the people in this house seem to want to eat, every day!) laundry, soccer (indoor), lessons.  It's a lot, but okay.  Busy is good. 

And then something happened that threw the wheel into overdrive, and me going head over heels.  It's not my story, so I can't share it.  But it really threw me for a loop.  You know the feeling.

You're running along, keeping up, but almost at the extent of what you have in you.  And then with no warning, you're flying through the air, landing on the road, skidding along, and when you stop, you find yourself feeling all beat up, covered in road rash, wondering how on earth this all happened, and how to pick up the pieces. 

And a car comes whizzing by and you barely roll out of the way, still shaking and trying to figure out how on earth to get yourself together again.

Yeah, it's all figurative, all in my head.  But that's where I found myself yesterday.  And all I wanted to do was crawl in bed, pull the covers up, and pretend that everything would just go away.  But I can't do that.  And it wouldn't help if I could.  So I put on my big girl pants, got going, and got us over to the last choir practice before our performance tonight. 

But I had Aaron with me (go figure, that kid still can't be left to take care of himself)  and his wheelchair doesn't fit up on the stand where the choir is.  So I sat in the first row and sang my parts from there.  This little boy of mine reached for the music and gave me the sweetest smile.  He waved his hand, with very small movements, in time with the music.  And then we came to my favorite piece in the whole program:  "Jesus Christ, the Apple Tree.

Funny, I was introduced to that song in 2009.  The year I was pregnant and starting to get over morning sickness, and excited about this last special spirit that was coming to our home.  I didn't have any idea yet of what lay ahead, just that we were going to be blessed again in the summer.  When I found out in April that he definitely did have Trisomy 18, I told William that when he passed, I wanted to plant an apple tree, to remind me of the life and strength of Christ, who was the reason I was still able to get up in the morning and continue on. 

So yesterday, as my soul was battered and worn, confused and hurt, almost at the very limits of what I could handle, the words touched me again, and frankly, I couldn't finish the song. 

I'm weary with my former toil,
Here I will sit and rest a while:
Under the shadow I will be,
Of Jesus Christ, the apple tree. 

This fruit doth make my soul to thrive,
It keeps my dying faith alive;
Which makes my soul in haste to be
With Jesus Christ, the apple tree.

And so I found the strength to continue, after spending time remembering Him.  As I search His words, I find comfort, solace.  He knows all about road rash and pain, about love and sorrow.  He knows it all, and He upholds me.  Without Him, I couldn't get back up, couldn't go on.  But with Him, I can and I will.  He is my Brother, my Savior, my Friend.  

Under the shadow I will be,
Of Jesus Christ, the apple tree.
Author Unknown

Saturday, November 24, 2018

Fine as Frog's Hair

He made it home, he made it to school, he made it back to baseline (mostly).

The last couple weeks we've been trying to get our feet under us.  We came home in time for Joseph and Aaron to say good-bye, but just barely.  Joseph has been in the Missionary Training Center (MTC) for just over two weeks and flies to Louisiana on Tuesday.

The adventure never stops, right?

We never truly did figure out what put Aaron in the hospital.  Possibly (probably?) his digestive system.  You know how when you get sick, it can take a while after before you truly feel back to normal?  Well, for some people with medical issues, it's even a bit harder.

 It actually took talking to a friend to really help me figure things out.  In retrospect, it all makes sense.  He was probably dealing with some post-viral gastroparesis.

In other words, that tummy bug he had before was leaving its mark on him.  I'll spare you the details of getting him "moving" again, but the long and short of it is that when your gut is backed up, you just don't feel well, don't breathe well.

We've made some changes (again) in his diet.  In an effort to reduce the amount of food but keep up with his calorie intake, I've switched from a 100% home blended diet to an organic formula for most of the time.  We still blend some, but not as much.  And so far, he's doing well on it.

He's back at school, having a great time.  We've been able to taper back on his asthma rescue med.  For a little while there he was getting it every three hours.  Yeah, it was a lot.  The last few days it's only been once or twice a day.

I know that doesn't sound real great.  I mean, if asthma is under control, you shouldn't even really have to use a rescue med much at all.  But for us, well, it is what it is.  Breathing is just not optional, regardless of what he thinks.

Two days ago was Thanksgiving.  And he was here, as were all my kids except Joseph.  I really am missing him and all his help, but wouldn't have him anywhere else.

And Aaron and Thanksgiving?  Well, that turkey nearly did in the turkey!  I was trying to turn his wheelchair and get him up near the table when he reached out and grabbed the platter near the edge!  My good china platter full of turkey!!  And when that kid latches on to something, good luck getting it out of his hand (just ask my hair).  I was picturing china shards and turkey all over the floor, while he laughed at us.  Fortunately, disaster was averted, and he moved on to yanking on my shirt and trying to grab my hand.  But try some turkey?  Whipped cream?  No way.  Not going past his lips.  Silly boy.

Yesterday was full of getting Christmas set up. His angel tree is in his room, up where he can see it.

Holidays are kinda weird for medical mamas.  You're so grateful for each one, but mindful that even the close ones aren't really guaranteed.

You're thrilled to experience it with your child, and ache for your friends who are decorating graves instead of filling stockings.  You love the look on your child's face as he sees the magic lights, and realize that you'll be missing so many other gatherings, but still wouldn't trade it for the world.  You give up on building some memories, knowing that some day, Tiny Tim's crutch will sit alone in front of the fireplace.  And you fight, fight with heart and soul to keep that day from coming.

Someone asked me not long ago when the time comes that I stop wondering if this (fill in the blank) will be the last.  I replied, "when the one comes that he's not here" and tried not to cry.

It's hard, so hard parenting a child that you will outlive.  It's hard parenting other children who know their brother will be the first one on the other side.

But today, today he is here.  He is laughing and playing.  So we'll turn on the Christmas music and lights.  We'll play, sing songs, tell stories.  And we'll be grateful.  Grateful for each and every day, good and bad.

And right now, they're good.  Very good.  Fine as frog's hair.

Don't be fooled by the calendar. 
There are only as many days in the year as you make use of. 
~Charles Richards


Wednesday, November 7, 2018

Discharge, Take Two

Trying again. He had a pretty good day yesterday, and a really good night. The only thing that changed is that his abdominal x-ray showed a somewhat large amount of "stool burden", you know, poop, so he got a suppository to help him out. Did that do the trick? Did he just need a little more time? Are we truly out of the woods? Who knows.

But once again, we're all packed up and ready to go, just waiting for papers. And hoping he's on the same page this time.

UPDATE:  We made it!!  We're home, he's resting, it's all good.  And hopefully, we won't be back for a LOOOONG time.

The thrill of coming home has never changed.
Guy Pearce

Tuesday, November 6, 2018

False Start, and Still No Answers

We were all set, like ALL SET, to leave yesterday.  At rounds they asked if I was comfortable going to the floor, or..., and I said, “home!”  I mean, he was looking great, totally where he should always be.  And had been pretty much since we got here.

Discharge papers were printed, meds were gone over.  William and the boys were on their way up to have dinner with me and take us home.  It was all great!  Was.

They were caught in traffic and I went upstairs to grab some food quickly.  Came back and things were not so great, in fact, not great at all.  He’d gone from five liters and comfortable to 12 liters and multiple episodes of bagging, and it continued.

We waited to see if he’d pull out.  Nope.  Two hours after it started it was still bag and 12 liters, then bag and 12 liters.  He was a mess.  The doctor was requested.  No one had any idea.  No one still has any idea.  More x-rays ordered, this time of his abdomen.  Nothing remarkable there.  No fevers, no discharge, normal “output” in his diapers.  Nothing.

So here we are.  I went home to grab a few things and bring the car back.  And we’re trying again.  We got him down to five liters by morning, but not until the night was almost over.  He’s not as happy as he usually is.  And we’re scratching our heads.

This is not what I had planned.  Joseph leaves tomorrow, and we’re not quite ready.  Plus there’s just those last few days of spending time with him.  And the thoughts that run through your mind.

What’s going on?  Where’s this going?  Why can’t we get him down where he should be?  Why isn’t he happy?

Honestly, these thoughts aren’t new.  Every time, EVERY TIME I leave him in the hospital I worry.  I wonder if this is the time I get a phone call I don’t want.  (That’s happened before.).   The one saying things are not good, not good in a very big way.

When I’m driving home from regular appointments I find myself really tired.  But driving to and from the hospital when he’s inpatient?  Nope, senses are pretty much on high alert, the adrenaline is definitely present, even if it’s not rushing through.  This is hard.

It’s hard for me, for Aaron, for William and the boys at home.  It’s hard on the kids that have moved out.  It’s just hard.  Sitting around gives your mind time to go places you wish it wouldn’t, you wish you didn’t even know how to think about.

November is hard anyway.  It’s darker, colder.  Eight years ago today we tried to extubate him after g-tube surgery and he failed, SPECTACULARLY, which set us up for our trach journey, which I still need to write about.

Right now, we’re aiming for tomorrow morning, or at least I am.  I was kicking myself on the way home last night for not getting a picture of Joseph with Aaron, so we “need” to be home tomorrow morning to take one before he leaves.  Please pray for our little bug that we can figure things out and get home.  Home where he belongs, where there are no IVs, no middle of the night treatments, and lots of love.  We need to be at home.

Everything is restless until it comes home. ~John Bate

Monday, November 5, 2018

Stumped, and a Superfast Turn Around

Soooo, back in September I told Aaron he had to be good for September because it just wasn’t his month, and October was kinda full, too.  Guess he took me at my word, ‘cause it’s November and he decided to take his turn.

Last Monday he came home sick from school and we got x-rays and labs, which came back mostly okay.  His ped figured it was a tracheitis, or infection in his trachea, so we started antibiotics and he stayed home a couple days.  I had to laugh at the argument I had with myself on Halloween.

“He HAS to go to school, it’s Halloween!”  “Um, no, he still does’t feel great, and he doesn’t care.”  “But I care!”  “He doesn’t.”  Yeah, this was all in my own head.  In the end, he stayed home one more day and went to school on Nov 1 in his costume.  Hey, it worked!

Friday he was a tiny bit off, and Saturday as well, but nothing too bad.

Sunday was another story.  He was struggling from the get go.  Ten liters of oxygen, working a bit harder, breathing a little faster.  I bagged him for a few minutes before we left for church and gave albuterol hoping to pop those lungs open and give him what he needed. No go.

I ended up having to bag him off and on (mostly on) through church.  Why were we there?  Well, we were already there and had the car that everyone came in. I could handle things as well there as at home, and well, we were.

Plus, if you remember, Joseph leaves for the Missionary Training Center on Wednesday, so Sunday was our very last chance to get everyone together for a family picture.  The next opportunity will be fall of 2020.  When you’ve got a kid whose life expectancy at birth was less than two weeks, you do what you have to, and you don’t take for granted that you have two more years.  Always hoping, but not assuming, you know.

So we did the pictures, although I haven’t seen them yet, came back inside and called 911.  Yeah, no way I was going to be able to make it up here on my own.

Even in the ambulance, we struggled with his sats.  Normally if you bag Aaron, he pops up to the mid-90s really easy and just hangs out there.  But we were bagging on 10 liters and couldn’t get above 82%.  Not really what any of us liked so much.

That is until about five miles out.  All of a sudden he decided that maybe this was okay.  He popped up to the mid to high 90s!  And pretty much stayed there.  Even in the Emergency Department he was looking good, like pretty close to home baseline good.  We pulled labs (again) and got x-rays (again) and nothing really stood out, except a higher CO2 (the gas you’re supposed to breathe off).

Everyone here is pretty much stumped.  Higher CO2 isn’t great, in fact, it’s not good at all, but we don’t know why it happened.  However, it’s back down again this morning.  We have no answers at all, just a few vague suspicions.

But given that everything is looking good, the hope (plan) is to start up his feedings again and as long as those don’t go sideways, we’ll come home tonight.  So all in all, about 24 hours.  Not too bad, especially considering yesterday.  But I wish we had some answers...

The important thing is not to stop questioning.” – Albert Einstein

Sunday, October 28, 2018

My Crazy Life

So many thoughts, so much going on.  I seriously need some therapy.  So you've been warned.  (I think I've said that before, you know it's true!)

In the past month plus, we've done a LOT around here, mostly good, but even good stress is stress.

Matthew came home from his two year mission for The Church of Jesus Christ of Latter-day Saints on September 12th.

Joseph went through the temple for the first time on September 22nd, the same day we did Deborah's bridal pictures.

Matthew spoke and we had family and friends over for dinner on the 23rd.

The wedding was the 29th with all it's attendant parties, etc.

We moved the three boys from the basement to upstairs bedrooms and the newly weds moved in downstairs which has been turned into an apartment. 

In the meantime, if you remember, Aaron's heart rate and seizures kinda kicked up and he was on a two-week (okay, ended up being 6 days) heart monitor.  'Cause he'd been told to be good, and he was trying, but still, you gotta make sure you're not forgotten, right?

Then there are all the preparations for Joseph leaving for Louisiana for two years.  He spoke last Sunday, the 20th and again, friends and family joined us.

If you're counting, that's four weeks between Matthew speaking and Joseph speaking.  Deborah's birthday was in there.  It's soccer season, which means two games and two practices a week, plus refereeing, because it all costs money.  And Deborah had a birthday. And music lessons and school, and oh, yeah, that homework thing that the kids would really prefer we forget. 

By the way, I'm still subbing (mostly) full-time.

Tired yet?  I am.

Then Aaron got sick last week.  Pretty sure it was the norovirus.  For those who don't know, that's a fairly nasty intestinal bug.  Last time, he ended up in the hospital.  Fortunately, this time we were able to stay home, but still, so grateful for a washer and dryer!

Anyway, it all kinda caught up to me.  Wednesday I ended up in the ER with what turned out to be my ulcer acting up again, which is a much better answer than the initial concern of a heart attack.

So there you have it, folks.  My life in a nutshell.  The good news is, we're all still here, still kicking, still getting things done (mostly).  Aaron's monitor results came back pretty good, which means that we're thinking the low heart rates we're getting on his pulse/ox may be more seizure related than
heart related.  I don't know that that's a good thing necessarily, but since he's not having seizures that we have to "rescue" him from, that's better than additional heart issues.  You know, trying to think positively here.

And with soccer season coming to an end, I really am hoping for some more "down" time, or at least a break from the reffing drama.  'Cause you know, asking adults to actually act like adults is way too much when they're on the sidelines.  Nevermind.  I'm not going there today.  I'm going to clear my mind and focus on my blessings.

Whew!  I needed to get this out!  Don't know about you, it probably didn't help you, but I'm feeling better.  It's been a long crazy several weeks since the beginning of September, but you know, most all of it's good, and I've learned from all of it, the good and the rough. 

This life is to learn from, to give us experience.  Those are good things.  So even though both good and bad stress is stressful and sometimes hard on the body, so do good and bad (okay, difficult) experiences teach us, if we let them.  Think I'd better make sure I learn, right? 

My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.
Maya Angelou

Sunday, October 7, 2018

So Many Thoughts! And Taking a Break

Well, we made it!

Deborah and Bronson are married, and it couldn't have gone better!

The boys from downstairs are now moved upstairs and the newlyweds are in the basement apartment.  In some ways, that was more challenging than the wedding!  Probably because there wasn't a beautiful fun party at the end.  (giggle)

Aaron did his heart monitor, sorta, kinda.  Well, for a few days anyway.  He wore it for five days really well, and we babied it through a sixth day, sorta, and then it was all over.  I'm still waiting on the results, but we did get some good data with bradycardia and tachycardia both showing up.  (Yay??)

And now I'm sure we're getting ready for the next big adventure, but I'm hoping for a couple days of downtime first.

This weekend is General Conference for our church.  Every six months we gather to hear counsel from our leaders.  It's been a spiritual feast along with new announcements and some challenges.  There's movement to bring more gospel teaching into the home, more towards a family-centered and church-supported ministry.  I'm thrilled, and excited, and scared and nervous.  For quite some time Ive slacked off in formally teaching my kids, and it's past time to stop pawning that off on others.

One of the challenges, probably one of the hardest for me, is to have a ten-day social media fast.  Kinda interesting the way those thoughts have gone in my head.  "But how?"  "I can't."  "What if I miss something important?"  "What if someone needs me?"

Then, "what if I really need this?"  "What if I follow the counsel of the prophet?"  "What example am I setting for my kids?" "What blessings am I willing to give up in order to spend more time on Facebook?"

And these past five weeks have been beyond frantic.  I've been barely hanging on.  Thursday night, I broke down sobbing because I was so tired, and those who know me know that I just don't do that.  Ever.

So yep, I need a break and that's the plan.  As of tomorrow, I won't be on Facebook until the 18th.  If I'm truly needed, I'll be accessible by text, direct message, or just good old fashioned phone call.  I'll miss wishing my daughter "happy birthday" on Facebook, but since she now lives downstairs, I bet we can make it work.

Aaron is doing well, as far as we can tell.  I'll still post to Instagram and his Facebook page because my phone can do that automatically, but I won't be checking to see who has "liked" it or commented.  Because I think I need this rest, and I know I need to follow the counsel I've been given.  I'm even looking forward to this.

Almost everything will work again 
if you unplug it for a few minutes ... 
including you.
Anne Lamott

Saturday, September 15, 2018

Missions, Weddings, and Heart Monitors?

Only three kids to get out the door! 
Okay, so I know it's been way too long again, but life has been just a bit crazy around our house.

School started (8/20), life was starting to look "normal" again (whatever that means).  Aaron LOVES school, but the first wek he came home twice early because he wasn't doing well, and then I kept him home the last day of the week.  Two days out of five?  Well, that's not the greatest, but oh well.  We'll work with it.  Kinda have to.  The weekend went well and off he went again on Monday (8/27).  

I went back to work on the third day of school subbing.  Even that close to the beginning, teachers get sick.  Started getting into a routine.  This will do.

And then the wedding....  I have just under four weeks total to put together Deborah's wedding.  She's been dating her fiance for two years now, but they just realized they had the perfect "storm."  His brother who lives in Japan will be home.  Matthew will be home from his mission, Joseph won't have left yet, and if they do it by the end of September, it won't be cold yet.  Awesome!  I just kinda wish they'd realized this a month or two earlier.  

Or maybe it wouldn't have mattered.  It's all coming together, better than I thought it could.  And I only have four weeks to stress instead of eight.  It's all good, right? 

Wednesday, Matthew came home from the Canada Toronto Mission.  He's been gone two years.  He's goofy, funny, and quirky.  The first missionary down the escalator, we got laughter and applause from other families when he came running toward me and I got my hug.  As I was crying (of course) he told me that if I was that sad to see him, he'd go get back on the plane.  (Told you he was goofy.)  Hugs all around, a few tears. Two years is a very long time.


And then he knelt by Aaron.  Aaron.  The brother he wasn't supposed to ever know.  The one whose days are numbered, we just don't know that number.  And he started sobbing.  Sobbed hard.  He left us, knowing full well that Aaron might not be there when he came home.  He went out to teach people about Christ and His love and families, knowing that his brother might be gone when he came home.  But he was there, and it was overwhelming.  As I glanced around, there were strangers watching and crying along with us.

And that heart?  Well, we're not sure what's going on with that.  We've added a new word to the family vocabulary:  "brady", short for "bradycardia" or slow heart rate.  And it can be a noun, a verb, a gerund, you name it.  But it's an ugly word.  When your heart doesn't beat fast enough, it doesn't pump the blood well enough and the cells don't get the oxygen they need.  No bueno.

So here's the story.  We started noticing them back in March, but they were pretty rare, just a second or two, and never down to 55 beats per minute.  Since school has started, they've increased in frequency and duration.  They're happening both awake and asleep.  (Everyone's heart rate drops during sleep.)  Last week and into the beginning of this week we had several per day, along with seizures.  Sometimes his heart was as low as 45 beats per minute for up to 30 seconds.  That's way too long and way too low, folks.

It's notable that the seizures and the bradies started about the same time.  Are the seizures driving the brady?  Or is the too low heart rate driving the seizures?  Are they related, or are they separate and one just exacerbates the other?  And how do we address it?

For now, he's been put on a heart monitor.  It's (supposed) to be on for two weeks.  Here's hoping.  He's always on a pulse/ox, which is how we know he's been having lower heart rates, but this will register every singe beat.  It went on last night.  It will come off two days before Deborah's wedding.  'Cause you know, I told him that September was not his month.  He had to behave.  I guess he sorta wants to cooperate, but also needs to make sure I don't forget about him.  Thank heavens for a cardio and cardio nurse that are willing to work with me when we really don't have time to come in for an office visit.  

And in case you're wondering, I'm planning to sleep again in October.

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While I live a busy life, the pace ebbs and flows. Brad Feld
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 “Time crawls when you are bored; 
walks when you are occupied; 
runs when you are busy; 
but flies when you are having fun.”
 ― Matshona Dhliwayo

Thursday, August 16, 2018

Access: The Right of Everyone

I rarely vent on social media, but this is a social issue.  Not that I'm under any delusions about reaching the people who really need to see this, but still...  I'm frustrated, and angry, and tired, and probably a multitude of other emotions. 

Handicap parking and access.  Yeah, that stuff. 

Four times, FOUR TIMES! in the past 24 hours I've struggled because someone (okay, four someones) decided that they and theirs were more important than someone needing help.  Twice at a soccer tournament, twice at back-to-school night, the same school. 

I get that there are a lot of cars.  I get that it's hard to find a spot.  And those empty spots up front look mighty tempting.  But ya know, there's a reason they're so close to the entrance and it's not because I think I'm better than you.  It's because we really need them. 

And those ramps on and off the sidewalk?  Yep, they're pretty important, too.  My son in his wheelchair with all his equipment weighs between 125 and 150 pounds.  Tipping over his chair as we try to negotiate a curb would be disastrous. We need that access. 

Let me take you through what it takes to get Aaron out and about.  We do it a lot, it happens, but it's not that easy. 

Diaper change, food and meds if we're going to be gone long, oxygen tank.  Do I have enough for the outing?  How long will we be gone and do I have a back-up plan if it lasts longer?  What if he struggles and needs more?  Have to plan for that.  Do I have enough battery on his pulse/ox?  Has his suction machine been charged?  Do I have a new "nose" (filter) and suction catheter for when he gets junky?  And we haven't even moved him yet.

Time to go.  Lift him into his wheelchair.  Turn his oxygen on, unhook him from the vent, hook him up to the tank.  Turn off the vent, humidifier, oxygen concentrators (yes, two).  Unplug the pulse/ox and wind up the cord, place on the wheelchair.  Buckle him in, five buckles.  Now we're ready to leave the room, as long as the switch from vent to "nose" hasn't dislodged anything that will need to be suctioned first.  That happens a lot.

Out to the car, down the ramp, open the car, lower that ramp, up into the van.  Reattach the floor buckle that has to be undone to get him in and out.  Secure the wheelchair at four points, secure his seatbelt.  Make sure it's not twisted and he's all good.  This requires access through both side back doors and the rear door.  Add extra oxygen if we're going to be gone more than a couple hours.  There's always a back-up tank in the car, but it's for emergencies, and yes, we've needed it before.

The good news is that his "go bag," his emergency bag with extras in it, is always on his wheelchair, so I don't have to remember any of that, unless of course I use something and it needs to be replaced.

Finally, we're on our way.  BUT when we get where we're going, it's a reverse of putting him in.  And then once we're out, we have to move kinda slow.  We can't just "slide" through the crowd.  We can't take the stairs.  We don't fit in a lot of spaces.

Guys, this is hard!  But it's doable, and I don't mind.  But when someone who is able-bodied thinks that what they are doing doesn't matter, well, it does!  It saps the energy, energy that I really don't have to spare.  It takes away from what I do have to give.  Frankly, it makes me want to cry.  And when I mention that I can't get to my car because you're blocking the ramp off the sidewalk (and there was no way to go around, there was landscaping on both sides) telling me that you were just leaving anyway, like seriously, what was my problem??  Well, YOU are my problem.  And I have already waited, trying to figure out how to get to my car.  Waited in the heat with a little boy who was already struggling.  Waited while trying to see if maybe I could possibly ease down around the driver's side because not only were you taking a handicapped space, you were also parked over the hashmarks that are designed for a wheelchair van to use.  

So please, people, think of someone else.  Think of those who are not as able as you are.  Yeah, it's an inconvenience to park way out there.  But so is trying to get around when you're not mobile.  And honestly, sometimes I get to the point where I wonder if it's worth it to try to go out at all.

I know it is.  Aaron needs that.  He doesn't deserve to be homebound just because Mom gets tired of fighting battles.  What he deserves is to be able to enjoy the world, just like any other child.  

And by the way, it's $125 fine to park illegally in a handicap spot in Utah.  Maybe it's time to get our local police involved. 

“Accessibility allows us to tap into everyone’s potential.” 
― Debra Ruh