Monday, January 15, 2018

Smiles are Back! (And Sometimes Mama is Slow...)

Okay, ever have those times when things are bugging you, nagging at you, but you're not sure what or why or whatever? 

Yep, that would describe the past few weeks around here, pretty much since mid-December.

Now, of course, there's any number of things that it could be blamed on.  Rising flu season, Christmas coming, work, kids, you know, LIFE! 

Last Sunday morning (a week ago) I was getting ready for church and thinking about Aaron.  I was taking inventory and congratulating myself on getting him off of two (2!) long term maintenance meds over the past month.  His asthma med he'd been taking for over four years, and his reflux one since he was four weeks old, pretty much his whole life.  Pretty awesome!

Until I realized, it wasn't.  Quiet moments are not only nice, they're necessary.  As I sat in the chapel listening to the prelude music, Aaron was restless.  And it wasn't his "this is fun, let's party!" restlessness.  It was more writhing, squirming, and uncomfortable.  He was hitting his head, hard, grimacing, and no way we could coax a smile.  All of a sudden, it all came together, right there.

Coming off the reflux med wasn't a good thing, and he'd been suffering for over three weeks. 

It started off slow, a little less restful sleep at night, not as many smiles.  A little more oxygen here and there.  Oh, I ached for my sweet boy who couldn't tell me what was going on. 

As soon as we got him, I gave him a full dose of his medication, and we restarted it at his regular time the next morning. 

On Friday I sent the following email to his doctor: 
We tried to stop Aaron’s Prevacid after his last visit in December. We gave him a half dose until 12/30 and then stopped. It didn’t work.

When we cut his dose in half, he became less social, less smiley, and less interactive. His sleep patterns are also affected with restless sleep at night and tired during the day. His oxygen needs also increased a bit. At the time, I didn’t connect it with the changes.

When we stopped it, he started needing more oxygen, especially just after eating and while sleeping. Usually those are the times his needs decrease. He had clear lung sounds and no secretions, and no other obvious signs of illness. His last feeding is at 10pm and he gets water overnight from 11 pm to 5 am. By Sunday, January 7, he was visibly uncomfortable, especially right after eating.

I restarted his Prevacid on Sunday, January 7 and we have seen much improvement. He is smiling a lot again and his teacher reports that he is interactive and attentive the way he was before we tried to decrease the med. He is sleeping well at night again. His oxygen needs are not quite back to baseline but they are better, and the patterns have returned to the way they were before.

I don’t know if we want to just keep him on the Prevacid or try Zantac. Please let me know.
She responded quickly that this was a "pretty significant response" and we'd just keep him on his Prevacid.  

My poor baby.  Two months ago my doctor diagnosed me with a "probable ulcer" (I know, what took me so long, right?) and put me on Prevacid. You know, it hurt!  My stomach ached pretty much all the time, and especially after eating.  It took several days of medication to make the pain go away, and I'm a bit leery of what's going to happen when I stop taking it in another month.  No wonder he wasn't smiley! 

But he is now.  And that nagging feeling gray cloud feeling?  Yep, it's pretty much gone, too. 


I’ve never seen a smiling face that was not beautiful. 
~Author unknown

Saturday, December 30, 2017

Merry Christmas, Happy New Year, and All That...


It's been quiet around here, peaceful, mostly. 

I'm feeling grateful, and a little bit of survivor's guilt, but mostly grateful. 

Christmas came and went without (medical) fuss.  Oh, there was a lot of other "fussing."  You know, cooking, cleaning, declaring that I was completely done, finished, not going anywhere until after Christmas, and then making three more trips to the store anyway.  (And that was ME going, not the times I sent someone else.)

Oh, well. 

But there were smiles, bright packages and tons and tons of goodies to eat.  Plus all my kids, minus one, under my roof for almost 72 hours.  Matthew wasn't here.  He's serving a mission for the Mormon Church up in Toronto Canada, but we were able to video call with him on Christmas day, so there was that.  For those brief moments, we had everyone together, and it was so good. 

And Aaron is completely turned around in his sleeping.  It's a bit of a struggle for him as he tries to stay awake during the day, and tries to sleep at night, but mostly he's happy about it all.  Of course, his siblings are similar.  I saw our first one up today about 10 am.  It's now almost 11:30 and the other two are still sleeping hard!  Wednesday morning return to school is going to be painful to say the least. 

I know I've mentioned before that there is some definite PTSD going on with me.  Actually, it's more Persistent Traumatic Stress Disorder than Post, and that's a good thing.  The only way to get to the "Post" part is for Aaron to not be part of this life anymore.  Most of the time we just sail along, no problem.  Yep, there's diapers and feedings, cares and suctioning.  Meds, LOTS of meds, but whatever.  It's what we do, day in and day out and it's just part of the routine. 

But some of you may have seen the post on his Facebook page a week or so ago where I referred to an emergency on the 18th.  For those who are curious, here are the details, in as much color as I can stand to rehearse. 

The Lone Peak Band played their Christmas Concert on Monday the 18th.  Joseph, band geek that he is (and so proud of him!) was actually playing in all three bands.  He's part of the upper two bands, and the director often has kids from those play with the beginning band to help round out the sound as they're a very small class.  Concert started at 7 pm and our nurse was scheduled to come at 6:30.  No problem, that works great.  Until it didn't. 

At 6:25 Aaron started dropping his sats, and pretty dramatically.  I put him on his big tank for the first time in a long time.  12 liters, and nothing was happening.  When he's off oxygen (usually due to Mom forgetting to turn it on) he usually settles with blood oxygen saturations in the low 70's.  If he's struggling, it might be high 60's.  Those are pretty ugly numbers, really.  And even on 12 liters, Aaron looked like he wasn't on anything at all.  We began bagging him, forcing 100% oxygen into those lungs and he improved a little bit, to the mid-70's.  His nurse arrived and I turned him over to her while I stepped away for just a minute to return something to the kitchen.  As I was in the other room, I realized I could hear him vocalizing, a lot and loudly. 

Andrew calls this the "house divided" picture.
Note that BYU is on top of the U of U.
Now, Aaron often does this, but not quite as loudly, and only when he's doing well. I quickly noted that he was pushing way too much air up and past his vocal cords, which meant it wasn't going into his lungs. But I had suctioned, a few times, and the catheter passed easily through the trach and really didn't pull anything out.  However, regardless, the oxygen obviously wasn't reaching down into his lungs and then to the rest of his body. 

Coming back in, I announced we were changing the trach and quickly.  Grabbed his already set up emergency trach, his nurse stopped bagging as we pulled out the one in him and rehooked him up to the new one that I popped in.  Examined the used trach and yeah, it was clean, totally clear, not the problem.  Except in the few seconds that he had no trach in, he coughed hard, two or three times.  We immediately suctioned him and pulled out three big, yellow plugs. 

 

Those plugs weren't in the trach.  They were down lower, somewhere.  We couldn't get them with the suctioning we were doing.  His sats popped up immediately.  He settled down and went to sleep.  I made sure I had the spare key to the car Joseph had taken over and we left.  Except I couldn't hardly leave. 

I was completely torn.  Aaron was looking just fine, absolutely perfect! We'd turned his oxygen way back down and he was satting in the mid-90's.  He couldn't have been better.  And there was Joseph.  He's a senior.  It was his last Christmas concert.  I needed to be there, too.  We were a few minutes late, had missed the opening number for the beginning band.  And I sat there and cried and tried not to throw up.  I kept checking Aaron's camera, only to see him still sleeping peacefully, numbers exactly where they should be, and his nurse watching him like a hawk. 

As the concert progressed, the music worked its magic on my soul.  I calmed, I found peace.  By the time the beginning band was done, I had stopped crying.  As the Symphonic Band played "Veni Immanuel" the words played through my mind, "Oh Come Emmanuel, and ransom captive Israel," I was soothed.  Wind Symphony's "All is Calm" recalled that there was peace to be had.  Mary knew that grief and pain would come, but that night, that Holy Night, it was calm.  I was reminded Who it is that is in charge, and that He loves my son even more than I do, and He loves me, too.  What a blessing to be so cherished.  He knows our days, our hours, and they won't be numbered less. 

So while the PTSD is awful, I'm grateful it's not over.  And I'm grateful for ways to work through it.  Grateful for solace, for peace, for comfort. 


"Christmas… is not an external event at all, 
but a piece of one’s home that one carries in one’s heart." 
– Freya Stark

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