Wednesday, December 13, 2017

2737 Days...

2737 days, 391 weeks, 90 months, 7 1/2 years...  such a blessing.

Somehow, I really don't know how, I decided when I was pregnant that if we could manage to get four months, four whole months with Aaron, I would be content, happy.  That seemed like such an unreachable goal, and it would be enough, if we could only have four months. 

I was wrong, so very wrong.  It can never be "enough."  I remember when my dad asked me, just before Aaron was trached if I would ever be ready to let him go.  I quickly said, "no, I wouldn't."  He gently remarked that it was good to know that. 

It's Christmastime.  Our eighth.  Such an abundance of time, yet not nearly enough.  Last Sunday I sang in our community choir.  The theme this year was "The Prince of Peace."  I was grateful to be able to get through the songs, mostly.  The closing hymn was "Silent Night" with the second and third verses sung by the congregation a capella.  By the end, there were tears running down my cheeks. 

See, it's a wonderful, joyous time, full of lights and happiness and fun.  But that's not the reason for the season.  It's our Savior's birth, and His gift to us.   

Last week, a woman I've been in contact with delivered her T13 son, and buried him on yesterday.  Saturday another friend's daughter here gained her angel wings, and yet a third child went Home last night.  And it was the angelversary (1 year) of another little girl that I was very close to.  Each one of these rips at my heart.  I know the moms.  They now belong to an exclusive club that no one wants to join, and yet I will, and so will many others.

To be privledged to sing of the Savior's birth, of all that that means...  Well, I am so, so grateful for Father's gift to us.  A line from "Good Christian Men, Rejoice!" kept (and keeps) running through my mind.  "Now ye need not fear the grave, Jesus Christ was born to save!  Calls you one and calls you all to gain His everlasting hall!  Christ was born to save, Christ was born to save." 


And that is the whole purpose of His life and gift, and everything.  He was born to save us.  I don't think I could handle this life, not just Aaron, but all the everyday challenges and struggles and minutia that goes into everything, without knowing that there is a higher power, a Being who loves me beyond measure.  And to think that there was nothing, no continued relation, no afterlife where we get to be with those we love and who also love us, well, my heart aches even more for those who don't know about this.  As hard as it is to be missing someone, especially through the years, we do have the anticipation of a joyful reunion.  Without that, life would be pretty unbearable.  With it, we know that while there will be pain, and we do miss our loved ones, it will end.  They are watching over us, they are aware, and will help us when they can. 

And then we also sang "Were you there," wondering if we were part of the heavenly host celebrating and singing and rejoicing at His birth.  I can't see why not!  What a wonderful night that would have been, and how we must have joyed and rejoiced to witness it.  Surely all the heavenly hosts, of which we were part, must have thrilled at the occasion.  The birth of any baby is such a miracle, but the Christ child, even more so.

I love this season, the season of giving, of sharing, of hope, of love.  I am so grateful for the chance to focus even more on the Savior.
 
And I'm grateful we're still sharing this journey with Aaron.  He had one of his "all you can eat" visits at the hospital today.  No one is quite sure what's going on, but it's good stuff.  His oxygen needs are lower than they've been in probably over two years.  He's sleeping less, that's a good thing.  Pulmonology said his lungs sound really good, and we're trying again to take one of his medications off.  It didn't work last July, but maybe now it will.  


 
I've gotten the final numbers from his heart cath, and yep, they're as ugly as I thought.  Research I found talked about one particular measurement and said that it's not good if it's over a six, and "particularly sinister for pediatric patients if over ten."  Aaron's comes in at a 12.   But it also noticed that in children with acquired pulmonary hypertension due to a cardiac defect (yep, that's us!) while the numbers are usually much worse, and don't respond well to medication, it also progresses very, very slowly.  So I'm going to go with that.

And I'm going to enjoy my crazy, silly, don't-want-to-sleep-at-night little boy.  Like I said, an abundance of blessings.

Unto us a child is born, unto us a son is given ... the Prince of Peace.
Isaiah 6:9 

Monday, November 20, 2017

So Thankful...

This is a thankful tree I drew on our big dining room window
to help us focus on our blessings.

Aaron is doing well, like really, really well.  Not sure I should have said that out loud, but I did.  I need to document the good times as well as the rough ones, and if I'm afraid to admit the positives, they get lost and all we have are the negatives.

What's made the difference?  I really don't know.  We've made several changes, all of them small, so I couldn't say for sure.

I've made some changes to his diet.  Turns out that even the natural sugars in fruit can influence inflammation.  But you also need some of the nutrients that are only in fruits.  So I've cut back on his fruit and included more veggies.  I've changed his non-dairy milk to mostly hemp or flaxseed from almond to help with balancing his Omega 3 and Omega 6.

I cut out one of his asthma meds.  Yeah, a little nerve wracking.  I looked back through notes and we really didn't see any improvement when he went on it, and it made him feel sick to his stomach.  But I'm watching very, very carefully.  It's been two weeks, but it's a long-term maintenance med, so the next two to four weeks will be telling.

And we've tried to have him up and about more.  There's a scripture that says "by small and simple things are great things brought to pass, and small means in many instances doth confound the wise."  (Alma 37:6)  Now, I don't begin to profess that I'm wise, far from it.  But hey, whatever it is, it's working!  And I'm grateful.

And he's definitely been out and about a bit.  You know, last hurrah before locking down for the cold/flu season and all.  Big brother Michael had a merit badge powwow down at BYU on the same day that David was playing soccer and Jonny was dancing.  You know we had to do it all, right?

Andrew was in Timberline's show "The Best Christmas Pageant Ever."  It's the story of the town hoodlums taking over the church Christmas pageant.  Wonderful tale.  If you haven't read it, I highly recommend it.  Written on a grade school/middle grade level, it's an easy read with a great message.  Here are three of my own hoodlums afterwards.

Then there was a trip to Shriners for a wheelchair check up where Aaron was fascinated by the big fish tank, and thought Mike and James were hilarious. 

And last weekend we were privileged to attend a Star Raising Party for a special little girl.  She and Aaron have been hospital buddies so many times.  Her mom is part of my "posse" and last April we were even paired in the PICU.  That was a tender mercy for me.  I was working full time so I wasn't there during the day.  She lives down in Delta, quite a haul from here, and had her five-year-old son with her.  So she slept at the Ronald McDonald House during the night and was at the hospital during the day.  I slept in the PICU and was gone all day.  We both watched out for the other child and kept tabs on things for each other.  It was a huge comfort to me to have Mary Beth there when I couldn't be there.

On Sunday, we heard about being grateful.  (I mean, whoda thunk it?  The Sunday before Thanksgiving, right?)  Anyway, one of the talks really resonated with me.  She spoke about how we have a tendency to drink out of the Bottle of Bitterness instead of the Goblet of Gratitude.  And she was right!  I think as a society we tend to focus on what's going wrong, instead of what's going right.  We complain when things aren't following our plans, going according to our specifications, aren't fulfilling the dreams we had.  We drink, gulp, and sometimes downright chug that ol' bottle.

But how much better if we can focus on the good, because there ARE a lot of good things happening.  The world is reaching out to others, charities are helping so many.  Neighbors help neighbors, kids pitch in and help.  And some of them even think that breathing might be an okay activity.  We introduced Aaron to the piano last week.  Yep, should have done that a long time ago.  The kid loves music.  He wasn't quite sure what to do at first, but he's getting the hang of it.  The old cause and effect thing.  And to help you smile, here's a short bit of his debut concert.  Gotta love this bug.



 Those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding.
Deiter F. Uchtdorf


Thursday, November 2, 2017

The Boy Who Lived


Sleepy boy.
Once again, way too long since I wrote.  Sigh....  Sorry.

I actually didn't think it'd been as long as it has been.  Thought I'd written since we came home.  I guess that part never made it out of my brain and onto the paper.  Again, sorry.

So when we last left our brave hero, he was hangin' out, partying in the PICU, 'cause you know, he's sure that's the happenin' place to be.  And besides, didn't you know?  Breathing is for wimps.

Leaving Primary's on Oct 21
We actually managed to escape that Saturday, the 21st.  So we spent most of our fall break in the hospital.  Someday we need to have a talk about same-day procedures that turn into multiple PICU days.  Someday.

Anyway, while I don't the final, final numbers from his heart cath, there are some things we do know.  We know they're not better.  In fact, they're worse.  How much worse?  I don't know.  But worse.  We also know that each time he goes under general anesthesia, it's harder for him in recovery.  In April, he ended up back at Primary's a few days post-op and we were there for a few more days.  This time, he only lasted a few hours on the floor before being transferred urgently to the PICU where he stayed for 48 hours.  Then we continued to battle things here at home.

Coming home on Saturday was more a testament to how much equipment and knowledge we had here at home than it was to him being better.  All in all, it was pretty much ten days before he was back to baseline, from a "same-day procedure."  That in and of itself is very telling.

So unless things change (hope springs eternal, right?) he won't be having any more trips to the OR, not unless it's absolutely necessary to preserve his life.  Because facts are, it will threaten his life.  We've gotten to the point where it will be difficult for surgical benefits to outweigh the risks.

Our "Boy Who Lived."
And FYI: waterproof mascara and a paint
brush work wonders for non-smearing scars!
 
So on to this week.  Tuesday was Halloween and Aaron went as "The Boy Who Lived."  I thought it quite appropriate.  Still pretty wiped out from his "fun" two weeks prior, it was hard to get smiles.  But he seemed to enjoy himself at school.  By trick or treat time, he was struggling and then fell asleep.  That's also probably something that's now in the past.

Sometimes it's hard, really hard, to look at him and know where things are headed.  But then I remind myself that we've lived with this uncertainty for over seven years, and he keeps on surprising us, rallying, smiling.  William and I were talking the other night, and I realized that if I spend my time mourning now, I'll miss out on some great times.  The time for mourning will come, is coming.  I don't know how far off it is.  I'm still hoping, holding out, for years.

Back in 2013, he and I had a talk, and I told him he had to stick around for at least 13 more years, until Michael gets back from his mission for the Mormon church.  And then at that time, we could renegotiate things.  The kid rolled his eyes at me.  (I'm not kidding, he did!)  It's been four years.  He's got another nine before we even talk about this again, and I'm going to do my best to hold him to that.  But if it doesn't work out, if his time is shorter, I want to remember all the smiles, all the joy, all the laughter I can.  And while pain and sorrow do touch it, I don't want that to be the overriding theme.
Blowing raspberries during a cold soccer game.

My kids will tell you that for the four months before he was born, Mom cried and researched, researched and cried.  I don't want that to be the kind of thing they, or Aaron, remember for this part.  So we'll do what we can, when we can.  We'll bundle up and make the soccer games, dance competitions, and other things.  We'll avoid crowds during flu season as much as possible, but still get out.  He'll go to school, learn, play, make friends.  We'll cram as much of life and love into whatever time he has.
Life is Beautiful!

And yeah, if you continue reading, you might be subjected to some of the darker thoughts.  It's how I process.  Please don't pity us.  Pray for us, but don't pity us.  We've got the most wonderful teacher living right in our home, right here.  Be glad for us.  Being able to have this angel in our home, take care of him, love him, is an incredible blessing.  And no matter the pain that will come, I wouldn't trade it for the world.

Our own little miracle, our "boy who lived."

I can shake off everything as I write: 
my sorrows disappear, my courage is reborn.
Anne Frank 


Saturday, October 21, 2017

Tincture of Time

I apologize for the lack of and brevity of the updates.  I don't have a computer up here with me and the phone is hard to do much writing on. Plus there's just a lot of processing going on.

Aaron tolerated the heart cath well and came out happy, as usual.  But he and anesthesia just don't have the best relationship, and they didn't work well together this time either.  So yep, we're still here.  He even managed to finagle a trip to the PICU which is where we are now.

Every day we hope to go home but so far he hasn't read the script right.

The results from the cath weren't great either.  In fact, they're bad. We won't need to make any surgical decisions.  Those are off the table. And that's the easy part.

So we're waiting on Tincture of Time and holding on tight to what we have.  Life is a marathon. Even Spidey and Superman seem to know that.

Last night when I was struggling I was thinking about our other kids at seven years old.  They were so different.  So active, so healthy.  But they were also like Aaron in that they were happy, enthusiastic. We also started reading the Book of Mormon with them in preparation for their baptism at age eight.

Aaron won't be baptised.  He's already covered with the Atonement.  But he loves being read to, and while we don't know his capacity to learn, we know he does learn. So last night, I started with 1 Nephi 1 and read it to him.  And found comfort myself.

There are a lot of struggles.  That's the way life is, for everyone.  But I also have been blessed to see the goodness of God.  And at I will continue to make a record of my days, and of Aaron's.

You don't always need a plan.  Sometimes you just need to breathe, trust, let go, and see what happens.
Mandy Hale





Thursday, October 19, 2017

And Now We Wait.


Aaron is in the cath lab now.  We weren't going to come up early, but after talking it over, the wiser course was to come last night.

We needed to stop his heart meds before the procedure and there's one in particular that he's really sensitive to.  Much better to be in the hospital already than to try to bring him in without it.








I know I've said before that he gets giddy when we come up.  Here's more proof. Silly boy.









Anyway, ideally, we will go home later tonight.  Realistically?  Well, we'll see...  Meanwhile, we wait.

 
Our willingness to wait reveals the value we place
on what we're waiting for.
 
Charles Stanley

Saturday, October 14, 2017

Heart Cath, Flu Shots, Wave of Light, So Many Thoughts...

What's on my mind? 

So much, just soooo much.

It kinda seems to run in circles. 

There's the whole "flu shot debate."  Except in this house, it's not a debate.  It's a "get it or we'll see ya in May".  I know, I've heard it all.  Believe me, and I've listened.  But somewhere, somehow, you have to decide who to listen to.  I've chosen to listen to those who have spent time studying the human body and how it works, over many, many years, and what causes problems for it.  I've chosen to look at history.  (Flu pandemic of 1918 estimated to have infected 500 million, 1/3 of the population world wide, and killed 20-50 million.)  And I've chosen to watch how flu has affected the healthy members of our family, and how "just as cold" has affected Aaron.

Snug as a bug in a rug at marching band.
Last year, I got the shot, and I got the flu, too.  Yeah, I felt awful!  But I didn't get the fever and a lot of the body aches that went with it, probably because of the vaccine.  I'm a pretty health individual, but I still ended up with a pneumonia from it, probably because I wasn't able to slow down and rest like I needed to.  Between the two, it was literally 3 1/2 months before I was back to where I felt good:  the beginning of February through mid-May.  I can't imagine how it would have been if I hadn't had some protection.  And the only reason Aaron didn't get it was because I avoided him all I could, and when I couldn't, I looked like something out of a hazmat situation.  You know, gloves, mask, robe, etc.  And lots and lots and lots of hand washing and sanitizer.

Then there was Aaron a few years ago.  We ended up in a Lifeflight and sicker than I've ever seen him, EVER.  And he had a cold.   Yeah, rhinovirus. 

There's a lot of information about cold vs flu, but this year I found some articles (yeah, I'm a medical junkie) about the WHY they're different.  Basically, what it boils down to is the areas they are comfortable in and attack. 

God is an incredible artist.
Most colds need lower temperatures to survive and replicate.  No, not lower like cold weather.  Lower like more towards the outer part of your body, the nose, throat.  The upper airway.  That's why they're referred to as URIs, Upper Respiratory Infections.  It's not fun, in fact, it's downright miserable.  But the viruses don't do so well at the higher temps found in your core.  You know, where your lungs are.

The flu on the other hand, binds to lower receptors, the ones found down in your lungs.  And often, it finds those by the alveoli and causes trouble there.  The alveoli are where the oxygen exchange takes place.  Unhappy alveoli leads to lack of oxygen transfer.  See the problem? 

And this year is forecast to be an especially bad year.  Sigh...

Then there's the heart cath we have coming up this week.  On Thursday.  Not that I'd forgotten, in fact at any point in the last couple weeks I could tell you exactly how many days, but a stark reminder came when I heard from the cardiology nurse asking if I thought we should be admitted the night before, or just wanted to come in the day of.  That in and of itself is telling.  Only with the most critical patients, the most complex, do they offer to admit beforehand.  In fact, this was a first for us even. 

No, I think we'll wait until morning.  You know, one more good night's sleep in my own bed.  And besides, it's more of the during and after that has my anxiety ramped up.  This is the same cath that we were supposed to do in August.  It's the one where it's possible that his pressures might have been reduced, giving us the outside chance of maybe someday repairing his heart.  Given recent (and not so recent) history, I'm going to be happy if it hasn't gotten worse.  But I guess we'll find out. 

Then there's the whole part where he hasn't done as well following anesthesia for the past couple years.  And the "lovely" weather and all the smoke haze.  And, and, and... 

Yep, not sleeping so well right now. 

But I'm not going to give in.  I'm going to put on my big girl panties and be grateful for what we do have.  We have a child whose smile lights up the world!  And he is still here, with us, more than seven years after his birth.  We have other kids who are doing amazing things to help those around themselves, who are compassionate and hard working.  We have a home and some wonderful nurses who care for and love Aaron, almost as much as we do.  And we have a family that has been tied together with eternal bonds. 

Sunday marks Infant and Pregnancy Loss Day and the Wave of Light.  This is where people across the world light candles from 7-8 pm, wherever they are, to allow a wave of light across the globe to remember the little ones who've gone on before us.  You would be surprised if you knew how many have survived this.  It may be your sister, your mom or grandma, your neighbor, your coworker, your teacher.  Infant loss is still a taboo subject in our culture, but it doesn't have to be.  Reach out, love someone, show them you care.  You can even participate in a digital wave by taking a picture of your candle between 7 and 8 your time and posting it on Twitter or Facebook and using the hashtag #WaveOfLight. 

Like I said, there's a lot on my mind.  In fact, there's a lot more, too.  Children (older than infants) who have passed recently, people I come into contact with that don't think they can ever "be enough", etc, but I won't go into that now, maybe another time.  I think I've rambled enough here.  Just remember, you are important, you are special, and so is everyone around you. 

 “How cool is it that the same God that created mountains and oceans and galaxies looked at you and thought the world needed one of you too.”
-Author Unknown

Sunday, October 1, 2017

Crazy Thing We Call Life

Working on sitting up, all by himself.
Oh, boy.  Once again, waaaaaaay too long since I've written.  And it's a good thing you can't see the clutter in my brain, 'cause it would scare you.  I write to unravel thoughts, process them, make sense (sorta?) of this crazy thing we call life.

So anyway, no news is good news?  Maybe? 

The powers that be (who is that anyway??) have put in place a new feeding system.  It was supposed to be implemented a couple years ago, but there was the whole "manufacture enough for the whole country/world" complication, and some other things that hadn't been quite thought through at the time.  Now, most of that has been figured out and the rest, well, us special needs moms are pretty much used to improvising and we share our hacks so it's working okay.

Port on the new feeding system
But along with the challenges of getting supplies, etc, comes a really great benefit.  Now our syringes and feeding bags screw into the adaptors instead of just sliding in.  For us, that means I don't have to hold it tight while pushing a med or a feeding, or even better, burping him.  This is HUGE in our house.  It means many fewer "feeding the bed" episodes, or squirting medicine on myself instead of into him. 

And just in case you really think I'm on top of everything and have it all together, let me share a funny with you.  Our old feeding system had two ports:  a larger one for the feedings or large syringes, and a smaller one for meds.  (Those also had a tendency to open at the least opportune moment.)  Because all the syringes now have the exact same tip, we don't really have a need for two ports.  That's the back story:

Shake it up, baby!
We got our new extension and started using it.  I thought it was fun how they had put "feed me" on the part that the syringe or feeding bag screws into.  It made me smile whenever I saw it, or even thought about it.  I mean, it's such a little thing, but why not?  About a week into the process, I looked a little closer.  It didn't say "feed me."  It said "feed, med" you know, in case anyone wondered what to place there.  I guess it makes sense.  Before we used different ports for food and meds.  So now, instead of being amused by a touch of whimsy, I'm shaking my head and laughing at myself for my lack of observation.

8 pm meds
But Aaron is doing pretty well.  Utah is mastering the whole bipolar weather thing which is always a challenge for him, so he's been getting breathing treatments fairly often.  All week we gave him albuterol every four hours, and we're tapering back to ever six hours this weekend.  So far, so good. 

Evenings are always crazy busy around here.  Because I'm working, I try to do all his prep work at night.  I was thinking about how this really shouldn't be taking so long to get everything done, and then I started looking at exactly what has to happen.

Prepping up his heart med
He gets a shake vest treatment every morning (with his nurse) and every evening with me. 

After that, we do two MDI inhalers and a nebulizer, along with a nasal spray.  He also gets a feeding and six medications or supplements in the evening. 



Ultimate Green Smoothie!
His nebulized medication doesn't have preservatives in it and it comes in glass vials.  Every night, I draw up the next day's doses.  That involves gloves, breaking of vials and filtered needles.  It doesn't take long, but it still...

Our silly boy getting his inhaled heart med.
Then there's his food.  He is doing so much better! on his blended diet.  Again, not a big problem, but it does take time.  The kids are great at helping.  All I have to do is ask them to grab me his things from the cupboard or the fridge in the garage and they know exactly what to get.  All in all, it's less time than the meals for the rest of the family, (think they might go for the all liquid diet thing?) but again, it takes time. 

And there's Aaron himself.  Not only do we need to do his trach and g-tube cares where we clean the sites and make sure they're doing well, but he seems to think it's fun to set off alarms, pulse/ox or ventilator, it doesn't really matter.  He's usually just fine, no issue at all, but we always have to check. 

So there's a whole lot that goes into our evening routines here.  Throw in a soccer game or practice, another activity, kids being run to and fro, and well, I'm afraid you can see how I misread "feed, meds" into "feed me."  But seriously, wouldn't "feed me" be a whole lot more fun? 

Our mountain. 90* one day, snow more than
halfway down the next.  Crazy!
 
 "If being crazy means living life as if it matters, then I don't mind being completely insane."
Kate Winslet