Monday, December 26, 2016

Acceptable Gift

Christmas has always been a special time for me, and even more especially over the past six and a half years as I've come to know and rely on Him at a more personal and intimate level.  And I know He loves me, the whole me, gray hair, short temper, fears and all.  But sometimes, (often?) I feel insecure, especially around other people.

Placing the Christ Child on
the Nativity Advent.
A few weeks ago, a friend asked if I'd like to join her family in providing a musical number for Christmas Sunday.  How fun!  And then as things evolved, as they always do, it changed.  Her family would do a number, would we like to do one as well?  Okay, that can probably work out.  Except my family is scattered more often than gathered.  But probably...

It took until last Sunday night to all come together and reach a consensus.  By then, there was a third group involved, too.  But Christmas mornings are best with lots of music anyway, so it was all good, at least in theory.

Enjoying Christmas music on his
Wish TV
Until Saturday night, Christmas Eve.  We had practiced as much as we could, but with school schedules, and work schedules, and our accompanist (oldest daughter, Deborah) moving into her new apartment, well, it wasn't very often.  Plus Michael who was going to sing the solo at the beginning was coming down with a cold.  And I realized something I hadn't thought through before.  Both my friend and the other family have members who make their living with music, as in get paid to perform, not just give lessons, neither of which any of us do here.

All lined up and ready for Christmas.
I was feeling very inadequate, under prepared, and yes, afraid.  Afraid that it wouldn't come together.  Afraid that instead of adding to a Christmas Spirit, we would take it away.  Afraid that it just wouldn't work.  If I could have gotten out of it on Saturday, I would have called it off, but by then programs were printed and I felt like we needed to go ahead.  But I was scared.  Not uneasy, scared.

I told Michael (who was also really nervous) that having practiced as much as we could, we had the right not to just ask for heavenly help, but to expect it.  But I still worried.  I did know that He would accept our offering, but I couldn't see Him in the congregation, just lots and lots of neighbors and friends, and strangers.  I tried to find the balance between looking up, but not making eye contact.  Ever tried that?  It doesn't really work well.  And we started.

All the kids "together" on Christmas.
Tender mercies.
And Michael's voice rang out, clear and pure, "O come, O come, Emmanuel, and ransom captive Israel."  The rest of us joined.  The second verse Mary, Michael and I sang the beginning and Joseph and David took over halfway through.


Somewhere in there, my friend caught my eye, the one who'd originally asked us to sing, the one whose family is incredibly, and professionally musically talented.  And she was smiling.  A gentle, warm, grateful smile.  And I knew our gift was acceptable, not only to the Christ Child and His Father, but to the rest of those listening.  And I had to blink back tears.  Her smile was the gift   needed



When we give what we can, He will accept it.  And what a blessing when others can be touched, too.

 The message of Christmas is that the visible material world is bound to the invisible spiritual world. ~Author Unknown

Sunday, December 18, 2016

Rough Spot and Getting Over It

We've had some rough times this week.  It's been busy, and sometimes good, but there were events on Thursday that reminded me just how fragile life is, and how much trust I have to have for him to be able to leave me, and how much training needs to be in place.  And it kicked the PTSD back into high gear.  So even though it was "only" a few hours, the effects on me and my body have lingered.

Thursday afternoon I was home, talking with my husband.  I was actually just getting ready to do something, but I have no idea now what that "something" was.  My cell phone rang and the caller ID said, "Dan Peterson."  I picked it up saying, "oh, this isn't good."  You know, I realized later, they do call me from time to time, and it's usually about a meeting, forms, you know, logistical type things.  But I knew in my gut this wasn't that kind of thing.

The school nurse identified herself and said, "Aaron is having an emergency."

"I'm on my way," grabbed my purse and ran.  As I drove out of the driveway, I called her back. Aaron had dropped his sats into the 50's (50's!!!, 50% oxygen in his blood!!!!!) the nurses had changed his trach and he was doing better, and 911 was there.  I told her she was not to let them transport him until I got there.

I drove as fast as I could, almost praying for a cop.  There was one, but he was on the other side of the road dealing with a minor fender bender and paid me no mind at all.  And of course, the high school had just let out.  So why is it when I need to hurry, these kids decide to drive the speed limit (sorta)?  I just wanted everyone to get out of my way, and prayed and prayed and prayed.  His school is only five miles away.  It felt more like 50.

I whipped into the first parking space I saw, nowhere close to staying in the lines, and ran into the school and down the hallway.  He was lying on the floor, looking oh so sad, but at least not all gray and blue.  I almost started crying myself.

The trach they took out had a big, ugly blood clot in it.  We'd been suctioning a bit of blood out for the past few days and the thought is that a scab came loose from wherever he'd been bleeding from and blocked the trach.  He had been choking to death.

I took him across the street to the American Fork Hospital just to make sure we weren't missing anything.  His chest x-ray looked just like it always does, his labs were perfect.  And he started laughing at everyone.  So we came on home.

And instead of going to work, or running errands, or anything like that, I stayed close to home on Friday.

But it wasn't all bad this week, and I'm trying to focus on that.

On Monday, Santa came to his school and visited with each child.  They held up a picture board so Aaron could tell Santa what he wanted.  He wants music.  Yep, that's Aaron.  His nurse caught a cute video of them interacting and especially with the events later in the week, it brings tears (happy tears) to my eyes.

video

My mother sent my Christmas ornament for this year.  It's a butterfly that she made.  Butterflies are my favorite. They symbolize the children who've left us too soon.  Beautiful, fragile, and touching.  It reminds me of the caterpillar that crawls into the cocoon and emerges as something so much more.

And this morning, I'm listening to beautiful relaxing hymns.  I'll go to church, take the Sacrament, and remember that even though sometimes it's hard, sometimes heartbreakingly so, there is hope.  There is life after death.  I know it. And I know that what waits on the other side is so much more than we have here.  But I'm still holding out for more time on this side of things.


But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ. He is the light and the life of the world; yea, a light that is endless, that can never be darkened; yea, and also a life which is endless, that there can be no more death.
Mosiah 16:8


Sunday, December 11, 2016

A New Angel for Christmas


Yesterday, at 4:14 p.m. Utah time, a friend's daughter became the newest Christmas angel.

My heart is broken.

Sweet Lily was almost four weeks older than Aaron and like him in so many ways.  Lily didn't have Trisomy 18.  Her genetic makeup was so individual that her doctors referred to her challenges as "Lily Syndrome."  But both kids were trached and vent dependent with crazy oxygen needs.  One day high, another low.  Both of these kids could swing from doing amazing to rushing in within minutes.

I can't even remember when and how Danielle and I connected.  It seems like she's always been there.  And "there" was often in the hospital.  We weren't often in the PICU together, but we'd pass as one was brought in and the other sent to the floor.  We spent enough time as neighbors on the same floor unit that we joked about putting in a window between our rooms, or even a door, much better!

There is a favorite cookie of mine up there, it has chocolate chips, coconut, oatmeal and macadamia nuts.  I found one in my room one morning and the nurse wouldn't tell me where it came from.  I knew it was Danielle.

She was there three years ago (right next door where we wanted to put in that window) when Aaron finally turned around a bit, gathered some energy, and serenaded the unit after being in really rough shape and sleeping 22 out of 24 hours for several days.

There was a time when Aaron was in with a cold and Lily was there already.  We were on the floor, but not doing well.  His doctor kept popping in and out of the room.  (That's not a good sign, you don't usually see them between rounds unless there's a problem.)  I knew Lily wasn't doing great, either.  He mentioned that he had to go to a care conference for another patient, but he would be right around the corner and could come quickly if things deteriorated further. I figured it was Lily.  He did excuse himself from that meeting to check on a patient.  Danielle was certain it was Aaron.  We were both right.

Lily cheated death so many times.  So many times the family was given "the talk."  When things like that happen over and over and over again, you kinda figure they'll keep on happening, with the same outcome.  They're sick, very sick, they rally, and life goes on.

Except not this time.  Her lung disease had progressed to the point where she wasn't going to "come back."  Her body was done, she was so frail.  Her spirit was strong, but her heart and lungs were just too scarred.  Danielle describes it as beautiful and peaceful.  I have no reason to think that it wasn't.  I also know beyond a shadow of a doubt that there is immense, indescribable pain.

I have been in tears since she first told me a few days ago that things weren't going to turn around this time.  There is a huge, Lily-sized hole in their lives, and in mine.  There will be silence where there was once the gentle hum of machines, and the quiet-breaking sound of alarms.  There won't be middle of the night feedings or trach cares to do.  There won't be breathing treatments, diaper changes, nursing schedules, supply orders.  There won't be snuggles and sighs and warmth.  They're all gone now.  All that was so much a part of every waking, and sleeping, moment of Danielle's life for the past six and a half years.

All gone.

Lily is fine.  She's free, she's at peace.  They will see her and hold her and love her again.  That will come.  But for now, it hurts, it hurts beyond measure.  And I ache for my friend.  Her life will go on, but it will never quite be the same.

Grief never ends ... But it changes.  It's a passage, not a place to stay.  Grief is not a sign of weakness, nor a lack of faith ... It is the price of Love.
Author Unknown



Monday, December 5, 2016

The Most Wonderful Time of the Year

It must be December because life just sped up again.
We claim the fourth guy from the left.

We had a ballroom concert and a cub scout service project.







One of Michael's requirements was to come up with, organize, and carry out a service project.  He chose to collect stuffed animals to donate to our local fire department to give to kids they help.  He really got an amazing response!  You should have seen the look on the paramedic's face when he dropped them off.  Having taken more than one ride with a kid in the back of a rig, I can tell you they will be much needed and loved.
The kids I managed to get to the party.  It's been a
while since I got a family Santa picture. 

We also had our church Christmas party, complete with the big guy in red himself.  Aaron wasn't too sure what to think of him.  It's his seventh Christmas.  Seven!  I still remember sobbing over his cradle on his first Thanksgiving saying I just wanted one Christmas with him.  We almost didn't get that.  He was lifeflighted less than 24 hours later, nearly dying on his way to the hospital.  Seven, such an abundance of blessings.

He's actually not doing as well as we'd like him to.  He's struggled quite a bit this week.
2010

We even went in today for x-rays and labs to make sure he didn't have something nasty that wasn't quite full-blown yet.  Fortunately (I think) he doesn't.  The up side is we're not heading to the hospital.  The down side is we don't know what's going on.

2011
2012
Each day has had some tough moments.  I'm grateful for so much support here in the home.


Without a monster oxygen tank and some nifty devices, he's be in the hospital.  But so far, he'd maintaining at home, and still going out to make memories with us.
2013
2014


2015

2016

"Like Thanksgiving, the spirit of Christmas was never meant to be shut up into a single day."  Robert Flatt




Sunday, November 27, 2016

Tradition


In Fiddler on the Roof they sing of tradition.  It's what bind them together, gives them their identity, allows them to feel secure in their place.  

We also do the same thing, whether is Monday Family Night, putting up the Christmas tree, back to school shopping, whatever.  Tradition anchors us, and also allows us the freedom to explore, knowing that we have a home base to come back to.  

I remember the first few years after we got married trying to put our two different Christmas morning traditions together.  It was actually kinda hard. 

See, William came from a family that got dressed, had a big Christmas breakfast all together, and then waited for Dad to check on whether the big guy had come.  

At my home, we weren't allowed up until 6:00 (I never slept Christmas Eve as a child, and that lasted well into my adult years, too) and Christmas was the one morning we were allowed chocolate before breakfast.  We could get into our stockings anytime after 6:00, but couldn't touch the rest of the presents.  And cinnamon rolls with chocolate chips were breakfast.  Yum!  

And since there's only one Christmas morning a year, we really needed to find a way to combine them.  Like I said, it took a little while, but when we sat down and talked about how the idea was a happy Christmas morning, with parts from both so we could incorporate both of our childhoods, it actually worked out pretty well.  Tradition, our own tradition.

Then a few years ago, we added in another tradition.  In 2013, Aaron was in the hospital for Thanksgiving, and somehow William wasn't all that interested in doing the big turkey dinner all by himself.  He took a poll, and no one else (at home) was real interested in doing it at all.  So they decided to do a Charlie Brown Thanksgiving.  And they loved it.

Now, before anyone goes feeling sorry for this poor neglected family of mine, understand that I had to fight my kids the next year to get my traditional Thanksgiving back.  (See, there's that word again:  tradition.)  We compromised, a lot like we did with Christmas celebrations, and now we do the big meal with china and crystal on Thursday, and on Friday when we're all exhausted from putting up the Christmas decorations, we have our Charlie Brown feast.  After only a few years, the tradition has been declared.  It is what it is.  Although I've been warned that if we ever disappear up to the Big House on Thanksgiving, the turkey dinner is the one going out the window.  

But I think the most important part of Thanksgiving is having our family around, our crazy, silly, sometimes cranky and tired family.  And while we haven't all been together for Thanksgiving since 2012, we all know where each person is.  And everyone knows what to expect, whether they're here or not.  The traditions bind us together even when we're far apart.  

And I'm grateful, so grateful.

“Tradition is not the worship of ashes, but the preservation of fire.” 

Tuesday, November 15, 2016

One Little Monkey Jumpin' On The Bed

Yesterday, Aaron managed to accomplish something that most children do by the time they're six months old.  He's (almost) six and a half  years.  He fell and bumped his head.

Our little turkey (okay, monkey) rolled over, which is awesome!!  Except he did it on the edge of a table at physical therapy.  And he fell off and bumped his head.  And yep, mama called the doctor, and both mama and doctor figured he's probably just fine.  But the doctor (and principal, and everyone else) said, no more monkeys by the edge of the table.

The table wasn't very high, only about 18 inches, and they put ice on the bump right away.  In fact, by the time he got home from school, I couldn't even tell it was there.

And his brothers have gotten a real kick out of telling him, "no more monkeys jumping on the bed."  Hopefully, they're also taking their own advice.  And really, compared to over the years, this has been pretty minor.  We've had chipped teeth, broken bones and numerous bruises.   I think we've got this.

In other news, he's started another new medication, but we were able to stop an old one. The new one is once a day and the old was twice a day, so we're down one dosing.  Yea!!

It'll be up to 12 weeks before we really see a difference, but he's doing quite well.  He's even back to breathing on his own for a few hours every day.  I apologize for not updating more, but typing is rough when you try to use one hand.  It's hard enough to keep up with my thoughts with two hands. Using one really bogs me down.

In the meantime, he's back to singing songs and telling us what's what (so to speak).  He's back in school and loving it, except the bumpy parts.  Today his school nurse couldn't be here, so he went up to the hospital for some meetings with me.  I tried to get some pictures, but he was playing the "won't look at the camera" game.  I think he almost won.


"Mix a little foolishness with your serious plans. 
It is lovely to be silly at the right moment." 
Horace








Thursday, November 10, 2016

Perspective

These three cuties are all now registered
voters.  Where did the time go?
Along with the rest of the nation, I was shocked and surprised when Trump won on Tuesday.  Along with many I had deep reservations about the man.  And along with many, I had prayed and studied hard before making my decision of who I wished would be in the White House.

That said, I believe (I hope) most Americans also did so.  I don't think anyone went to the polls thinking, "Oh, boy!  I really hope that by voting for __________ I wreck our nation."   I know in our home, we didn't all vote the same way, but we all love our country, and we each put our voice behind the one we thought would do the best job.

But it's one person.  Yes, it's a person with a lot of power now, but it's also one branch of a government that was established by our forefathers with a system of checks and balances.  And I believe in it and I trust it.  And I will continue to talk to and email my representatives, both on the local and national level and express my thoughts and concerns.

But I refuse to think the world has come to an end, or that we are finally being delivered.  In four years, we'll have another opportunity to do the same thing again, although I hope without all the hate and fear mongering.

However, let me share some other stories that have also been in my newsfeeds, ones that I think hit a lot closer to home, and are frankly, in quiet ways, more important and have a longer lasting impact.

On Tuesday, in addition to all the nasty political posts, I saw a picture of a mom with her toddler.  The little girl was lying, "asleep" in a hospital bed.  But it was much more than that.  Tests had just shown that this precious daughter had no more brain activity, and Mom was having to break the news to the siblings that their little sister wouldn't be coming home.

On Wednesday, another friend posted that her husband's tumor had shrunk.

Others are experiencing life events, too.  Little ones admitted to the PICU, others babies being born to happy families.  Wedding anniversaries, birthdays, soccer games.  We've been experiencing the "practice" in the practice of medicine with Aaron as we tweak one thing and then another, and then revisit some old issues in new ways, trying to optimize his health.   Frankly, none of these have been much affected by the polarization that seems to exist in our country right now.

We're all Americans.  We live in a wonderful country.  Are there problems?  Sure. Are we everything we could be?  Of course not.  But we're trying.  And we need to try harder to come together.  To see each other not as enemies, but as fellow citizens who want what's best for our nation.  We have different ideas.  That's okay.  Our great constitution was a matter of compromise, painful, soul searching compromise, but the men who wrote it came together for the greater good.

We need to do the same.  We need to put down the insults and stop hiding behind our fears.  Believe me, I understand them, at least some of them.  My own son could face repercussions from this election.  I'll have to redouble my efforts to advocate on his behalf, to help others see the value in his life.

But truly, I believe that the area we have the most influence, and the area where we are most likely to need to change, is right within our reach, our homes, our communities, our online outreach.  Let's pull together.  Let's be Americans.

"Your success as a family... our success as a nation... depends not on what happens inside the White House, but on what happens inside your house."
Barbara Bush

Thursday, November 3, 2016

He's Happy Again!

Just could not stop laughing at me last night.
He's back.  My happy, playful, silly bug is back.  We've seen glimpses of him, but for more than a month now, that was all.  Brief signs of the child we know and love so much.

This week, we've made some medication changes, tweaked some other things like feeding schedules, had a follow-up appointment with cardiology.  But I think the biggest change was unscheduling an asthma med.  His new heart med can cause bronchospasms, so we've been pre-medicating to avoid those.  But the albuterol (asthma med) can also cause a high heart rate.  It got to the point where he didn't sleep for more than an hour or two at a time, ever.  It's hard to do much of anything when you're that tired.
One of his 15 minutes sleeps.

And I knew I was tired.  On top of everything else, I covered three out of six nights last week.  Plus another child's bus had a (minor) accident coming home from school.  There was another crisis that came to a head.  Plus my right arm has gotten to the point where I can barely use it again.  (can I say typing one-handed is pretty darn slow?  We won't talk about all the typos.  I hope I'm catching most of them.)


Then wild man who should have still been sleeping.



That's how my week started off.  Lots and lots of worries, not much sleep, and was this the way things were going to have to be?

Was this the beginning of a more permanent decline?

I held my own breath as I made the decision to stop the pre-medication, hoping it wouldn't make his breathing worse, and that we could respond in time if it did.
Actually really relaxing, for the first time
in way too long.

Not only did it not make it worse, he slept from 2 pm Monday until 2 am Tuesday, woke for about 30 minutes, and then slept until time to leave.  He napped more Tuesday and yesterday more than usual, but again, it was peaceful, not restless.  And he's back to his active, happy, teasing self.

And me?  Yesterday when he went to school, I went back to bed and didn't get up for six hours, that after sleeping for over eight the night before, and I was still more than ready for sleep by bedtime last night.  I hadn't realized the extent of the emotional drain on my body.  But things are really looking up on all fronts.  I can feel the stress leaving.  We can do this.  We can do hard things.  Just not all the time.  And I think (I hope) we might be getting a breather.

"There is virtue in work and there is virtue in rest.
Use both and overlook neither."
 Alan Cohen


Wednesday, October 26, 2016

Finally...

Finally, finally I might be able to see it.

It's been a crazy ride around here this past week (month?  year??).

I was realizing that it was five weeks ago on Friday that he went in for his ear surgery.  That went pretty well, aside from his idea that his ear cap was an optional accessory.  Whatever.  I kept him out of school the next week to recover and sent him back on Monday the 3rd.

The cute "little" tank is
actually the full-sized one
he usually uses.  Next to it is
the M tank.
Tuesday the 4th had us back at Primary's for a long 17 day stay. Then it was come home and work and fight to keep him at home.  He came home sick, no doubt about that.  When we came home, the hospital also arranged for us to have a few oxygen M-tanks brought in.  For comparison, the E tanks we usually use (and what you see older people pulling) hold about 625 liters of compressed oxygen.  The M tank is over 3400, so roughly five times as much oxygen.  That's also the size tank the ambulance carries, for whatever that's worth.

And we've used two in the past 5 days.  And we only use them when he's needing more than ten liters of oxygen per minute.  There's been some bagging, pushing 100% oxygen into him.  There's been a lot of vest CPT (chest physiotherapy), a lot of albuterol, a lot of prayers and pleading.  And not so much sleep.

Yesterday I have to admit, I was feeling defeated.  It felt like the movie Groundhog Day.  Each day was slightly different, but I wasn't finding the key to getting out.

But when I stopped and analyzed things, I realized it was getting better.  We hadn't bagged him for a few days.  He was spending less time on the oxygen tanks each day.  We started to space out his CPT and his albuterol.  When he first came home, it was every three hours for both, around the clock.  Thank heavens for night nurses.

Yesterday, he only got his vest three times, and when well, he gets it twice, so very close.  We only gave one extra dose of albuterol.  He still needed 8-10 liters most of the time, but wasn't on the tank at all.

And today?  Well, today he's below five liters of oxygen, and satting just fine, thank you very much.  He's still pretty tired, but you would be too if you thought daytime was for sleeping and nighttime for playing.  I think he might almost be better.  He might even go back to school soon.

Finally.

"And sure enough, even waiting will end ... if you can just wait long enough."
William Faulkner

Friday, October 21, 2016

Minion on the Move

We made it home!

This hospital stay really started to weigh on Aaron especially.  Each day he got less and less interested in interacting.  Fewer smiles, more tuned out.

But oh boy, put him in his bed in his house?  Wild man returned in force!  He couldn't stop smiling and talking and laughing, and setting off his alarms because he was laughing so hard.  (The ventilator thinks laughing is breathing, and it was too fast.)

He's still sick.  In fact, the snot factory is in full force.  And his oxygen needs have been all over the place, like as low as 1 liter (haven't seen that in forever) and as high as 12.  But we're handling things here at home.  Right this very minute, he's singing in there.  And his smiles make it all worthwhile.

"The best journey takes you home."
Author Unknown

Wednesday, October 19, 2016

The TALK

A touch of whimsy up here.  This giant pumpkin is sitting
outside the main entrance.  It is HUGE (that's a pallet underneath it)
 and just  look at all the detail in the carving. 
 We're still here, still hanging out in ol' room 3058, on the J pod, in the Children's Surgical Unit. And I think we're both getting a little tired of the scenery.

But once again, last night, he had a weird bump.  And given that his cold isn't supposed to peak until tonight, we decided to play it safe and stick around one more night.  Frankly, if he decides that he'd much rather have the PICU ventilator than his old boring one, I want to be a short elevator ride away from it, not a 45 minute ambulance trip.  By tomorrow morning, we should have a change of scenery.  It will either be home (yay!) or the PICU.  Honestly, my money's on home, but you're never quite sure with this kid.

So anyway about the TALK.  Anyone with a medically compromised kid knows about this one.  And well, if your child wasn't supposed to live at all, you know, "incompatible with life," you've probably had it more than once.

Dad and big brothers came for a visit on Monday.
I hate it.  Let's just get that out there.  I know it's necessary.  They wouldn't be doing their job if they didn't make sure we parents understand reality.  It is what it is, and there is no way around the ugliness.  So for those who might be wondering what all it entails in Aaron's case, I'll put it out there for you.  And then, until the time comes that I truly have to face it, I'm shoving it back in the deepest, darkest corner of my mind and nailing the door shut.

But here's what this visit has brought:

There are only a few different pulmonary hypertensive medications.  Oxygen is first line of defense, and he's been on that since birth.  Then there's sildenafil (liquid Viagra).  He started that at about four months old.  Three years ago they added a drug called Bosenten.  That's an interesting one.  There is no actual clinical data for pediatric patients, meaning no dosing recommendations whatsoever for people under the age of 12.  And it is known to sometimes cause liver issues, really bad ones. But when your option is the drug or death, well....  'nough said.  He takes it.

Biggest grins I've seen in a while.
This time we've started something called Ventavis (iloprost).  That was the subject of most of the recent posts, like this one, this one, and this one.  But here's the issue.  This is the last one.  There are no more.  We are out of options.  All the others are some sort of variation on these.

Pulmonary hypertension is considered progressive and non-reversable.  And he's already quite compromised because of his trach and ventilator.  This is the ugly truth.  What does it mean for Aaron?  I'm not sure exactly.  Each of his other meds have bought him about three years time.  There are studies which show really, really good results with the combination of bosenten and iloprost.  But of course, there are no studies, none at all, with pediatric patients, let alone peds with Trisomy 18.

And he has full Trisomy 18.  And he is trached and ventilator and oxygen dependent.  And he is a boy.  Yes, that does make a big difference.  The time is coming when we will have to make really hard decisions, decisions no parent should ever have to make.  But that time is not yet here.  And I refuse to face it until it is.

What can't  be measured is the songs he sings, the smiles and giggles, his mischievous nature when he teases us.  You can't size up the joy that he brings and the lessons he teaches us.  You can't calibrate how much love we've learned from him.

So we will bury him.  It will be awful, beyond description, more than anything we've had to bear.  But to avoid that pain, we would have missed out on all the beauty.  There's already enough anticipatory grief.  And maybe not enough anticipatory hope. Today, I chose hope.

"God puts rainbows in the clouds so that each of us — in the dreariest and most dreaded moments — can see a possibility of hope." 
~Maya Angelou

Sunday, October 16, 2016

Practicing Patience

After the "excitement" on Friday, Aaron managed to stay on the floor.  This was almost entirely due to everyone involved knowing him well, and knowing that we had the ability to bag him easily if problems developed.  Had anyone involved, from the doctor, RT and nurse on the floor to the PICU staff not been very familiar with him, we would have taken a field trip downstairs to the PICU.

We thought (and hoped!) that it would be a one-time thing, and the next several hours seemed to suggest it might be, with the exception that he was on higher oxygen needs again.  Not crazy high, but higher.  Then his 8 a.m. treatments came on Saturday.  Same thing, although not quite as dramatic.

With that, I requested a second viral panel.  That's the test to see if he's got nasties brewing, and since his panel when he was admitted was negative for everything, it had the potential of being very useful.

Remember how I wanted to get out of here before he could catch anything?  Remember how much "fun" we have with rhinovirus?  Guess whaaaaat....

Yep.  He's got it.

So we won't be going home for a few more days.  Right now, his symptoms are mostly increased oxygen needs, but not to the point where we need to be in the PICU.  In fact, where he currently is, I could support at home.  However, it hasn't hit its peak yet.  And this is the single biggest reason that we know our local paramedics so well.

Often when he's struggling, like he was when we came up, I can hyper-oxgenate him by bagging and giving him 100% oxygen and that will buy me some time, usually an hour or more.  But with rhino, once I put him back on the ventilator after bagging, he almost always drops again within a few minutes.

So we're hanging out, making sure it doesn't get worse.  We might make it those ten-plus days after all...

“Patience is the ability to idle your motor when you feel like stripping your gears.”

Barbara Johnson

Friday, October 14, 2016

Sometimes It's Really Hard

When you've worked all week, making dozens of calls a day all over the state and country, trying to get a medication your child needs authorized and delivered...

When you sleep(?) night after night on a hospital couch/bed...

When you finally get that medication, and it feels like forever, even though the nurse manager says you've moved mountains and gotten things done in less than half the time it usually takes...

When you plead with your child to just hold on, keep breathing...

When your planned day to go home comes, and goes, and you're still in the hospital because now he's not processing his oxygen well enough, but almost...

Sometimes you take a short break, leave him with people who know him well, and step aside to grab a bite to eat.

And the phone rings.

It's the nurse, he's on 15 liters (you left him on 6, or 8, you can't quite remember).  The respiratory therapist is with him.  You race out, rushing back, wishing you'd thought to tell the nurse to start bagging, but also knowing that the RT knows him well and really doesn't need to be told.

The small room is full:  doctor, nurse, respiratory therapist, IV team, x-ray waiting right behind them, PICU fellow and charge nurse, too.

The bed is pushed catty corner, to allow more people and equipment in.  You squeeze in, hold his shaking little body as the team works quickly, trying to find a vein.

He's not being bagged, but you don't like the way he looks, the way he sounds, and when the RT calls for a therapy bag to be brought in because it's more sensitive than the typical bag, you reach around and grab yours to hand to her.

All the time, you're silently pleading, "keep breathing, breathe deep, Father in Heaven, help my son, my child, my baby."

And his lungs begin to respond, the IV lasix starts working quickly, the x-ray isn't great, but isn't any different than the one the night before.

And he smiles, and starts batting at toys, and everyone steps back and watches for a few minutes.

The PICU doc makes sure that transfer paperwork is filled out as much as possible in case he turns south again.

He starts sucking on his tongue, a sure sign that he's getting ready to sleep.

And while you're relieved, so relieved, a small part of your heart breaks just a little more as you realize you have to tell the family at home that once again, you're not coming home tonight, and you don't know exactly when you will.

But he's breathing, he's comfortable, and the couch/bed, extended stay, missing family is worth it.  Because he's still here.

But sometimes, sometimes it's hard, really hard.


“The bravest sight in the world is to see a great man [or child] struggling against adversity.”
– Seneca

Thursday, October 13, 2016

The Saga Continues...

Well, we finally have medication coming.  It should land on the doorstep tomorrow before 10:30, for reals this time.  (Thought it was coming a couple days ago, but that turned out not to be the case.)

The nurse came and trained me this morning on how to break open the medicine (it comes in little glass vials) and how to draw it up, give it, and hopefully not stab myself in the process.

Now we're waiting on the nebulizer 'cause just any ol' nebulizer won't work.  I've got two at home already, and neither will do the job. But reimbursement being what it is, the DME doesn't want to just order it in without making sure they can get as much back as possible.  I get that, really.  Except that, every day we sit in the hospital waiting is costing them more than it would be to just buy it outright and not get anything back.  And since the insurance is the other side of the same company that runs the hospital and DME, you'd think they could move sooner rather than later.  Instead we're saving pennies and burning dollars.

We don't even have to have the machine in our possession.  As long as it's ordered, we're fairly confident that the hospital will loan us one until it comes in.  They just need to know I'm not going to disappear into the night and never show up again.  Like that could ever happen anyway. I mean, this kid doesn't exactly fly under the radar.

Anyway, even though it's a drug that's often given in the hospital, (like really often) it's fairly rare for a kiddo to go home on it.  And even more rare for that kid to have a trach and go home on it.  As in, they tell me we're the first.  So what was challenging and time consuming initially has become even more difficult.

So we sit and we wait.  I do take some comfort in knowing that when the next kid comes along (and they will) it will be a much easier process.  Sometimes being a pioneer isn't exciting.  Sometimes it's tedious and downright boring. I wonder if my ancestors sometimes felt the same way.


"In a word I was a pioneer, and therefore had to blaze my own trail." 
Major Taylor

Tuesday, October 11, 2016

Waiting, Waiting, Waiting...

Well, he looks great, and we're still here.

See, apparently this kid does nothing that's simple.  But I guess we already knew that.

Before we can go home, we need his new medication.  Except you can't just go down to the corner drugstore and pick it up.  Nope, it has to be ordered from a specialty pharmacy.  One headquartered in Tennessee.  And before that happens, it has to have a prior authorization from his insurance company.

If you've been following him for a while, you might remember this post from about three years ago.  Yep, same situation, except this time it's not just a pill, and I actually have to have equipment and training.  

Yesterday his doc came in and said, "it's a good thing you like us, 'cause this is going to take a least ten days."

What??  Oh, no, it's not.  (At least I hope not.)  I started working the phones and by last night, we had insurance approval.  Less than a day, not too shabby.

Now we're trying to get the medication and the training.  I'm really, really hoping to be home tomorrow.  That is, if all the little ducks line up in a row.  So far, they seem to be more interested in waddling off.

Every day we sit here increases the chances of him picking up a bug, which means a week in the PICU to the tune of about $10,000 a day.  Yeah, that's four zeros per day.  Plus further recovery time on the floor.

And besides, I really miss my own bed.


"You can't stay in your corner of the forest waiting for others to come to you. You have to go to them sometimes." 
A. A. Milne



Saturday, October 8, 2016

A New Weapon for our Arsenal

We think we've found the culprit.  And it's what I figured but didn't want to admit. It's his pulmonary hypertension.

Yeah, that beast. The one that is progressive and has no cure.  That (so far) is not reversible.  And it's continuing to get worse. Can you see why I didn't want that to be the answer?

Anyway, over the past few years, we've visited the idea of iloprost, an inhaled medication that will help relax the blood vessels in his lungs.  For various reasons, we've discarded it each time.  But now, we're putting it on board.  We're starting with (only) four times a day.  It can be increased up to 10-12 times a day.  Yeah, every two hours, 'round the clock.   Even with all his other meds that we do, this one is sounding kinda daunting to me.

But then I have to remember, when we first started this journey, his feeding tube scared me speechless, which is a hard thing to do.  Now?  If I needed to, I could instruct someone on how to place one while talking on the phone driving down the freeway, no problem.

So anyway, I'm told that it will take a little time (don't know how long "a little time" is) for it to take a full effect.  BUT after one dose at 2:00 this morning, we started seeing changes, big changes.  Like, I got after the nurses because he was satting 99% and they were just letting him sit there. They didn't know he wasn't supposed to be that high and he was only on 3.5 liters.  It dawned on me that this has never been a problem in the hospital before.  As soon as he's maintaining low to mid-90s, we bust out of here.

And he played and played and played all night long.  He's snoring now, but you would be, too, if you went to bed about 4 a.m.

So now we watch him through the weekend and make sure things go well, make sure he tolerates the medication okay, make sure his blood pressures don't end up dropping.  Then on Monday they'll train me on administering it, and hopefully, we'll be good to go.

Gotta get our supplies in order and all, but the end of the tunnel is in sight, and I don't think it's an oncoming train.

"Carve a tunnel of HOPE through the dark mountain of disappointment." 
 Martin Luther King, Jr.

Friday, October 7, 2016

Friday in the Big House

There's still not a lot to tell.  I've put off posting updates, because I just don't know what to say.  

Nothing's growing out from the sample from his lungs.  He still has no fevers and his lungs sound pretty good.  Albuterol doesn't seem to be doing a lot for his oxygen needs, but it's also not raising his heart rate, so it's probably needed.

We pulled a BNP yesterday.  It's a blood test which measures how much stress the heart is experiencing.  Anything under 100 is normal.  Normal for everyone, not just Aaron.  His was 34.  34!  He's never been that low before, and no, there isn't a "too low" number for that one.  So while that doesn't give us a new direction, at least it's comforting. 

But he's tired, really tired.  When he's awake, he's happy.  But he's sleeping a lot.  And still needing 5-10 liters of oxygen, depending on whether he's awake or asleep.  

Watching "Inside Out"
I'm really hoping to see cardiology today.  I don't know that they've got anything to offer, but because of the holes in his heart, his pulmonary hypertension could still be causing issues.  So we'll see what they have to say.  We've also given him some steroids, in case we're missing inflammation in his lungs.  

Because we don't have any idea when he'll get sprung, tomorrow afternoon I have to go home and make more food for him.  Thank goodness for good friends who are willing to come in while I'm gone.

Basically, it kinda feels like we're shooting in the dark. 

Oh, and don't mind the lovely bandage on his nose.  He's got a small scab that he keeps scratching off.  And in spite of his platelets finally being up at least close to normal, when he bleeds, he likes to bleed.  So this is our latest effort to keep his bed from looking like a massacre site.

“Only in the darkness can you see the stars.” 
― Martin Luther King Jr.

Wednesday, October 5, 2016

No Answers

Not sure where to begin with this one.

Monday, Aaron went back to school.  He was doing well, and seemed excited to get out of the house.  He did seem to be experiencing a little discomfort, but I wasn't sure. He did well at school and then went to cub scouts with Michael and I, where he saw some of his friends, the Lone Peak paramedics.

Monday night he struggled a little more.  More oxygen, less smiles.  But nothing else.  I considered keeping him home.  Through the night, he still was restless so I sent out texts to his nurse and bus driver that I was just going to watch him.  I guess he thought he needed more attention than that.

Watching TV upside down in his bed. Silly boy.
I ended up bagging him five or six times over the course of the morning, and about 10 o'clock, loaded him up for a trip to Primary's.

What's going on?  We just don't know.  We really don't.  He hasn't acted like he was in pain since sometime early Tuesday morning.  He has no secretions, none.  He has no fevers.  His x-ray looks really good (okay, good for him).  His labs are just about perfect.  Heart rate, breathing rate, totally normal.  Nothing.

Nothing except he's requiring a minimum of eight liters of oxygen while asleep and ten when awake.  But I guess we'll be grateful for the ten.  Above that, and we transfer to the PICU.  Great people down there, love having lunch with them, don't really want to need them.

So we wait and we watch, we pray and we hope.

Outside my window has been a bit dreary today.  It's been cloudy and rainy (and even a little snow!).  There's a covered bridge to the next building, and beyond that, downtown Salt Lake.  Just over the top of the bridge, I can see the spires of the Salt Lake Temple.  What comfort that brings to me.  A reminder of the temporary nature of this life, but of much better things to come.  When the dark comes, the lights shine bright.  I wish my camera could really capture it.  I'll have to take a picture with my heart.

"All the darkness you may be experiencing cannot dim the light of a single candle. Have hope."
Author unknown