Sunday, January 15, 2017

Thrown For A (Promising) Loop

I'm sorry for not updating sooner, especially after last Sunday's post, but I've been working full-time and also trying to process my thoughts.

See, last Sunday, along with everything else I wrote about, I was revisiting the (very incomplete) funeral plans I've thought about off and on for almost seven years now.  It's less than a month until the seven year mark from when we were told our baby was not likely to ever live, ever at all.  That coupled with all the challenges we've had with his oxygen brought it all back to the forefront of my mind, and I was reviewing what I do have.  Vague plans, some ideas, but yeah, they're written down.  Some may think that's morbid.  Really, it's just our reality.

Anyway, so we had our cardiology appointment on Tuesday, and I will freely admit, I wasn't looking forward to it.  I mean, if it didn't happen, they couldn't tell me bad news, right?  But we went anyway, just not real thrilled to be there.

And Dr. D. threw a curve ball, a big curve ball.

"So how about setting up a heart cath to see what needs to happen to make him a surgical candidate?"


I didn't think that could ever happen.  But Dr. D. thinks that if we do a two-step process, it might be an option.  There are a TON of challenges and complications, and that's IF his pressures are determined to be safe enough.  It's two heart surgeries, several months (at least) apart, and the second is open heart.  It's risky for a typical kid (yeah, there are typical kids born with holes, too).  It's exponentially more risky for him.

First they would go in and put a band on his pulmonary artery to restrict the amount of blood that is allowed through to his lungs.  Right now, the lungs get way too much, which causes them to stiffen, yeah, pulmonary hypertension.  This would decrease that.  Then, when the pressures drop enough, they'd go in and close the hole in the lower chambers of his heart.

See, the meds he takes do a (somewhat) decent job of mitigating his pressures, but the VSD (hole in the lower chambers) is the cause of it.  As long as we treat symptoms but not cause, it's going to get worse.

On the other hand, if we do nothing, it progresses.  But according to Dr. D, baring anything else (and there are a TON of "elses") with his pressures increasing, he could live into his 20's.  Seriously??  20's???  The oldest living boys I've heard of with full T18 both died at either 18 or 21 (differing accounts).  When I pointed out that each med had only bought us three years and we were out of options, he said that was only three years with sats in the high 80's, low 90's.  But what would happen is that his sats would slowly, slowly drift down until they could no longer sustain life, but that was still many, many years off.

Now, like I said, there are a lot of other "elses."  Plugs, viruses, other illnesses, they all can and do rear their ugly heads.  In the past week, two young men who are local to me lost their lives to viruses, and then there was my friend's daughter just before Christmas.  Like I said, it's our reality.

But to go from revisiting and revising funeral plans to being told that he could be expected to live for another 15+ years, or even longer if he could have and tolerate the surgery?  Well, it's a little mind bending.

In other news, he's done pretty well this week.  He did come home from school early on Friday because he was having tummy trouble, but he's recovered well from that.  Earlier this week when we didn't have a nurse, he actually slept all night.  Of course, on Thursday after I'd worked all day and had another full day's assignment on Friday, he chose not to sleep.  Oh well.  I've kept him up and out of bed today in hopes that tonight (nurse-less again) he'll cooperate.  If not, I guess I'll sneak in a nap.  Since I'm subbing now and there's no school tomorrow, I won't be working.  Either way, we'll make it work.  And, heaven willing, look forward to making it work for a long time.

Always look on the bright side of life. 
Otherwise it'll be too dark to read. 
~Author unknown

Sunday, January 8, 2017

One of "Those Days"

The super cool shirt one of his brothers
got him for Christmas.  I think it says it all.
It's been one of "those days."  Ups and downs and all arounds.

Got woke up at 3 this morning by my nurse.  He was desatting into the 70's.  Yeah, the fun begins.

He's been struggling more the past couple of days, but I was also remembering that for some reason, January and February see him struggle more with his asthma.  We've been doing extra albuterol (all-better-all) treatments, and seeing some success.  Got him back to where he belonged, and went back to bed.  The rest of the night went pretty well, but he was still needing ten liters of the good stuff.

So we stayed home from church.  During church time, he did amazing!  Actually got down to six liters for a while.  After church?  Well, not so much.  It found us bagging him, again, because 15 liters wasn't doing it.

I wavered.  Do I throw in the towel and call for back-up?  We changed out his trach, nothing.  Did several breathing treatments and bought a little bit of space.  But I did pack my suitcase.

But here's the thing, he looks soooo good!  I mean, through this all, he's laughing at us and pulling at his tubes and things.  His sats are down in the low 80's, high and sometimes lower 70's, but he's giggling!   I mean, how do you call 911 for that?  And yeah, it wasn't just the monitor.  Capillary refill on his forehead corresponded with his machine.  It was real.

This is him getting his treatment.  How do you call 911
when you're dealing with a kid this goofy and happy?

I did discover a lot of blood inside his left ear, probably another ear infection, and cleaned that out really good.  He's doing better since then, but really?  An ear infection?  I can only hope it's that simple.

Sleep (and breathe!) peacefully little man.
Sweet dreams.
But when he's struggling, my mind goes places I don't want it to.  I told William it would almost be easier if he was sick.  Then I'd know it was something we needed to work with and support and get through.  Mentally and emotionally, it's much harder when I can't see a reason for him to be struggling.  I remember that whole "progressive and nonreversible lung disease" thing, and try to ignore that he's on a lot more support than he used to be. I try to distance myself from reality, asking questions like, "if I ignore his sat monitor, will it stop beeping like a child throwing a tantrum?"  No, I know it won't, but then that never worked with my toddlers either.

So here's hoping it was that ear.  It wouldn't be the first time an ear infection masqueraded as a heart or lung issue.  (There are a couple posts about that in 2013 here and here.)  We have no nurse tonight or tomorrow night, so I'll be watching him extra close.  He does have a nurse coming in for school tomorrow, although the jury is still out on whether or not he'll go.  If he continues looking well now that I've cleaned out his ear, I think he'll be on the bus.  If he struggles more tonight, well, nope.  But he loves school, and it does him good, (really, it helps him physically) to go to school.  So if we can make it happen, we will.  Besides, I'm supposed to be subbing tomorrow myself, and it's not a good thing for the sub to call off.  And we also have an appointment with cardiology on Tuesday.  Trust me, ain't no way we'll miss that one.

But right now, he's sleeping, peacefully in his own bed.  And even though I won't sleep in my bed, I'll be in my home.  I am grateful.

Visit [him], gentle Sleep! with wings of healing, And may this storm be but a mountain-birth, May all the stars hang bright above [his] dwelling, Silent as though they watched the sleeping Earth!
Samuel Taylor Coleridge

Tuesday, January 3, 2017

How to Extend Christmas Break

Christmas has come and gone and so has the New Year's Day.  All the decorations were put away, and (eventually) all the regular stuff brought out again.  (I had a sign that goes over the front door go AWOL for a while.)

In the morning, pre-Tylenol.
Just not a happy camper.
And Aaron decided that he hadn't had enough time off of school.  He came down with what looks like a tummy bug Sunday night.  I'm grateful that's all it was, because the way he was acting, I was hoping it wasn't influenza.  (And YES, he had his shot, back in September.)

He spent most of the night and into the morning Monday throwing up, or at least trying to.  Because of a surgery he had at four months, he actually can't throw up.  We have to open his g-tube extension and vent it to relieve the pressure.  But he can and did retch, and the food I gave him at 11 p.m. was still in his stomach at 5 a.m. (TMI?  Sorry.)

Asleep, breath rate of 36, heart rate of 120,
sats 90, on TEN liters of O2.  Not cool.
And then the diapers, and the low grade fever, and just being miserable.  Plus the oxygen, and more oxygen, and some more on top of that, just for fun.

I started running Pedialyte in hopes of maintaining his hydration and threw on a bunch of breathing treatments.  With this kid, anything that is a problem also causes problems for his breathing, and I mean anything at all.

I'm grateful for our big M-90 oxygen tanks.  The concentrator just wasn't cutting it for most of the time.  He was needing 12 to 15 liters of oxygen through his vent, and twice during the day, once in the morning and again in the early evening, that wasn't enough either.  We had to bag him on eight liters just to maintain his sats.  In other words, our home ICU was up and running.

Afternoon bagging session, and grins.
But once we got through the morning (and gave Tylenol) he was happy, so happy.  I mean, does this kid look sick to you?  And I had a hard time justifying taking him to the hospital as long as I could bring him back into where I could maintain him.  I mean, for a virus, all they can do up there is support him, and if I can provide the needed support here, so much the better for everyone.

But yeah, it did get him out of school for today.  All the others are gone.  Deborah's moved out, Mary, David and Jonathan have gone back to college (even though they don't start class until next week).  And of course Matthew is in Canada.  Joseph, Andrew, Michael and Aaron are the only ones left at home.  I know for some that seems like a crowd.  Here it seems pretty quiet.

Aaron's Christmas ornament this year.
But not too quiet, for which I'm grateful.

Sanity may be madness but the maddest of all is to see life as it is and not as it should be. 
~Don Quixote

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.


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.

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.

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.



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