Sunday, February 18, 2018

Thoughts and Prayers

I've heard a lot of chatter this week about the futility of "sending thoughts and prayers."  Along with the rest of the nation, I was shocked, hurt, angered, saddened, and frightened by the news out of Florida on Valentine's Day.

Valentine's Day.  The day I danced with my last 6th grader at his dance.  The 6th grader who was a 1st grader at the time of the Sandy Hook shooting.  The day I subbed in a ballroom class in a high school.  The day my 17 year old attended a typical day in another high school.  Did it hit home?  Yeah, it really, really did.

But here's the thing, in reality, there's not a whole lot I can do for those families in Florida.  Do I think more gun legislation would help? I don't know. Would better mental health services work?  Maybe.  Would establishing better connections between people?  Probably.  So I'll work on that one.

And in the meantime, I do what I can in my own little world.  Every. Single. Morning when I walk into a new classroom, I scout it out.  I lock the door and use a magnet strip to cover the strike plate so it only takes a second to secure the door.  I look to see how to close the blinds.  I figure out where kids can go to be out of sight of a door.  And I pray!  Because I think it matters.

There are so many times when we can't do anything else.  But I believe prayer matters. I've always believed this in kinda a ethereal, nebulous way.  But in the past eight years, I've come to know it in the most intimate, personal way.

Eight years ago, when I simply couldn't stop crying, I felt the peace descend as family members found out, and started praying for us, and I found strength.   When Aaron was lifeflighted, I felt the prayers of the neighborhood that was woke out of sleep in the wee hours of the morning, and found peace.  When things took an awful turn for the worse during a time I stepped away from the hospital for a few hours, and I went racing back, the prayers of people around the world went with me as my daughter sent out a plea for them on Facebook.  I learned that they are tangible, real, and oh so important.

Does that mean that's all we have to do?  Of course not!  If a staff member showed in in Aaron's doorway and said, "Good luck, I'm praying for you" I think I'd take their head off.  They have a job, they can do it, and they darn well better.  But if they also want to add their prayers, well, this mama had better have some Kleenex handy.  I remember a nurse stopping me in the hall and telling me he was praying for Aaron, and he's not a member of our faith.  That was several years ago, and I still tear up when I think of it.  Because it matters.

So yes, using prayer as an excuse for not doing something is not acceptable.  Not at all.  But using prayer in conjunction with whatever can be done, big or small, and maybe especially praying and sending good thoughts when there's nothing else you can do is important.  It's vital.  It's life-sustaining in many, many ways.

And if you want to spare some prayers for my four boys who will have to drive home from Southern Utah tomorrow afternoon in the middle of a winter snowstorm, and maybe a couple for their mama who is already worried, I'd be so grateful.

The effectual fervent prayer of a righteous man [or woman] availeth much.
James 5:16

Sunday, February 11, 2018

Grounded!

Shirt says,
 “I’ve got MOVES you’ve NEVER SEEN”
Boom!  He’s grounded.  Until Easter.  

Yeah, we tried to make it work this winter.  He’s doing so well.  But more and more I’m hearing about how bad the flu season is, more people around here are getting sick, more children are dying.  We still haven’t reached the peak according to reports I’m seeing.  And it’s just not worth it.

While mortality rates haven’t hit as high as some years, the number sick are rivaling the year the swine flu made it’s debut.  And as long as people think they just “have to” go to church, the store, the hockey game (seriously!!), we’re not taking those chances.

He’s still going to school, but see, he goes with a nurse whose primary focus is keeping him well.  His school is very careful to watch for any signs of illness, any of them, and quickly exclude the child.  And his nurses think nothing of calling me and saying, “today doesn’t look like a good learning environment for him.”  Code speak for someone looks germy.  Nobody there is thinking the world will end if they happen to miss a day.

And frankly, that’s the crux of the matter.  The world in general will go on, in fact, it probably won’t even realize you missed a day.  Yeah, there may be some assignments that need to be made up.  Someone else will have to pinch hit for you.  That’s why I even have a job.  I substitute when a teacher can’t make it to work.  Is it ideal?  No.  But is it worth killing someone over?  No, it’s not.

But most people don’t see it that way, so I have to.  It’s okay.  We’ll just stay home and try to keep him safe.  And when spring comes (the real one, not just this lack-of-winter season we’ve been having) we’ll come out of hibernation with the rest of the animals.

Eight years ago today, we had an ultrasound that rocked our world, changed my whole focus.  I never dreamed my life would look like it does now, but that’s okay.  I’m a better person for it, more focused, more grounded.  And I’m not looking for it to change any time soon.

And that trach change that Michael said he wanted to do?  Yep, last Sunday night he did one.  My 11-year-old son changed his brother’s trach and did a fine job of it, too.

Better a thousand times careful than once dead.
Proverb


Sunday, February 4, 2018

Not Much, But Still, So Much. Life is Good.

This cute kid has been doing really well!  Unfortunately "has been" seem to be the operative words here.  He's struggled the past few days and I'm not sure why. 

Has he caught something?  Right, like that could happen with all the bugs going around, not to mention we had the lovely influenza B right here at home a few weeks ago.

Is it a change in diet?  I ran out of the tofu we've used as a protein source and I started using a protein powder.  I've gone over the ingredients in the powder and really, there's nothing there that stands out.  It's a vegan, non-GMO, no sugar, etc, etc recipe, but still...  Actually, I'm kinda hoping it's this one.  Much easier to fix.  Tomorrow he'll be getting his food without it and we'll do that for a few days to see if that makes the difference.

In other news, he got a haircut yesterday.  Yep, he liked it about as much as most 7 year old boys do.  Not at all.  Unlike most of those boys however, he was also afraid of the clippers.  Poor kiddo.  As I flipped them on, he started crying.  But with big brother's help, he managed to get through it, and his bath and then fell asleep.  But the new do sure looks good!
















Aaron knows what's going on.  He is very aware of what's happening around him.  A couple weeks ago he was using his talker at school to tell his classmate "good job!" on a presentation.  The next day he announced that he was "tired and grumpy."  And his nurse agreed, but then he perked up in the afternoon.  In fact, it was the same morning after he stayed up until 4 am.  Tired and grumpy?  I can't imagine why.




The other day I was talking with one of the boys about maybe learning how to change the trach.  We've always been more than open to teaching any of our kids how to take care of Aaron, but also careful not to push them into something they don't want to handle.  Joseph (17), Andrew (14) and Michael (11) are all very capable of suctioning, bagging, increasing oxygen, feeding, venting the tummy and so on.  But none have ever changed the trach, so I was asking about it.  Joseph and Andrew were both adamant that it was something they really didn't want to learn.  They've helped enough times that if they had to, I have no doubt they'd do just fine, but they don't want that responsibility, and that's okay.  Michael on the other hand, did try once, and Aaron was a bit of a turkey and started trying to do crunches and laughing at him. 

So as we were talking, I mentioned that Michael probably would want to do a trach change, and Aaron, who had been lying there watching the exchange, starts nodding his head!  Yeah, he really did!  I looked at him and grinned, and asked him, "So do you think Michael wants to change your trach?"  And he nodded more, and more vigorously!  Michael wasn't around, so later when he was, I asked him, and "of course I want to!"  Aaron knew, he knows his brothers, and he called it.  He knows Andrew and Joseph would do anything to help him, but they're not comfortable with that aspect.  And he knows that Michael wants to do it all. 

One more note about Aaron and Michael:  Michael's science fair projects have been driven by his need to understand Aaron.  Last year, he looked at barometric pressures and how they influence oxygen needs.  This year he also incorporated heart rates and respiratory rates.  As far as his project went, he noticed that even when oxygen needs didn't change, heart rate and respiratory rates increased.  HOWEVER, he also noted that Aaron has become much more stable over the past year.

Last year, Aaron's oxygen needs fluctuated much more than anyone else's did.  This year, his oxygen was pretty stable as his heart and lungs were better able to compensate and he didn't use much more oxygen.  And Michael was the one that realized that, not me.  Pretty incredible. 

Finally, it's heart month.  But for those who live with a congenital heart defect, every month is heart month.  And sadly, many babies don't ever grow up.  In fact, twice as many children die from CHDs than all the childhood cancers combined.  When a child passes, if they are dressed in clothes, those outfits need to be new.  Understandably, new clothes are not at the forefront of the parents' thinking, and so are often pulled from a closet at the hospital.  Primary's closet is empty.  A sweet friend wants to fill that in memory of her own heart warrior and I'm trying to help. 
This was less than $25.

If you would like to donate clothes (with tags on them), you can send them to her or bring them to me, or send money for them to be purchased.  Her Facebook page is Colton's Closet  and you can read more about her son there.  At the moment, sizes 4T and 5T are needed the most, but everything from preemie through children's sizes are welcome.  It's such a little thing for us to do, but means so much to a parent to be able to dress their child, sometimes for the very first time, before sending them away. 

“Awareness is like the sun. When it shines on things, they are transformed.” 
Thich Nhat Hanh



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