Home!

We get to go HOME today!!  

Probably our fastest rhino admit ever. (4 days, people!) I’m not going looking.  If someone wants to doublecheck, that’s fine.  Just do a search for rhino and be prepared for a LOT of posts.  It’s our nemesis.  

Anyway, he’s on “sick” settings on his vent to keep his lungs open, but still, HOME!!

Thank goodness for a mini-ICU at home.  

I remember a PICU parents lunch several years ago (we had those weekly pre-Covid) where I mentioned we were hoping to go home that day.  A poor mom sitting across from me got kinda excited.

“You mean you can discharge straight from the PICU?”

Her little one was in with RSV and had just bounced back to the PICU from the floor.  They had been hoping for home but she wasn’t quite there yet, and I’d gotten her hopes up again.  

The social worker gently chimed in, “SHE can go home from the PICU, you won’t be able to.”

And I explained that we already had at home a ton of medical equipment.  She was glad her baby wasn’t going to have all of our “accessories” but still disappointed.

But here we go!  (And I get my 20 foot work commute back again tonight.)

Ah! there is nothing like staying at home, for real comfort. 

~Jane Austen

How We “Work”

We’re here, we’re back, whatever...

Trisomy 18

Two months, it's been almost two months guys since I last wrote.  I was thinking it had only been one, which is still too long.  But here it is, March 18, Trisomy 18 awareness day.  

Trisomy 18, incompatible with life, lethal, vegetative, non-responsive.  Yeah, not this kid.  

Someone forgot to tell him what he's "supposed" to be.  

Instead, he's full of life, goofy, silly, and growing.  

Aaron attends a special school for severely disabled children, ages three through 21.  It serves the most fragile and complex children.  And they would like him to move on.  Move on because he is doing school work that is beyond what they usually see.  Education is supposed to place children in their least restrictive environment (LRE) so they can progress to their fullest ability.  A big part of his last IEP (individual education plan) was spent speaking about how we can help him move forward.  

If it weren't for this stupid pandemic (yeah, I hate it too), he would have started spending time at the grade school behind his school for part of each day.  Absolutely not happening anytime soon.  But we spoke about having him Zoom in for library time, or other activities.  Ideas are being brainstormed.  This kid is going places!  

Will he ever go to college?  Nope.  Will he ever perform on the same level as his typical peers?  Not likely.  But is he learning and developing and using that brain of his?  ABSOLUTELY!!  

He has also inspired me to work harder.  A year plus ago, I was musing out loud about pursing a masters degree.  Someone reminded me that I could chose to do it, or not, and I would still be the same age either way in three years, so I started looking into it.  There's a university close to here that has a hybrid program that fits what I need.  I need a schedule, I need to be kept "on track", and this one is mostly online but Fridays on campus.  So I started on the pre-requisites and completed an application last fall.  I have finished one of my classes (that one was HARD!) and am almost done with the next two, and will start a Masters of Social Work in August.  

This child, this growing, learning, thriving boy, has had such a huge impact upon my life and the lives of so many.  

Trisomy 18 awareness day.  Know it, spread it, embrace it.  

“Don’t wait for the stars to be aligned. 

Reach up and rearrange them in the way you want. 

Create your own constellation.” 

–Pharrell Williams

Some Assembly Required

Aaron got the cutest shirt from my parents for Christmas.  I about died.  And then found it even funnier when a kid asked why it was so appropriate for Aaron.  He's definitely "Some Assembly Required."  

He has a g-tube for feeding, along with extensions and a feeding pump.  He has his trach, ventilator, oxygen and all the requisite supplies.  Plus a super high-powered nebulizer, a suction machine, pulse-oximeter, a shake vest, and most recently, a cough assist machine.  And that's just the stuff that requires electricity. 

He sees nine different specialists plus therapists and whichever doctors are on service when he's in the hospital. 

It doesn't take into account all the meds, his wheelchair, stander and other various and sundry "stuff."  It takes a lot to keep this kid going.  

But a friend pointed out, it's kinda true for all of us, isn't it?

I mean, I'm definitely still a work in progress, and sometimes a much slower, tedious progress than I'd like to be.  Today we were challenged to look at five areas of our lives and set goals on how to improve.  Wanna know my initial reaction?  "Are you kidding?  I don't wanna..."  

Yeah, see the need?

But as I thought about it and listened to peaceful music, a more gentle spirit entered my soul.  And so I did.  And I wrote them down.  And I'm going to work on them.  

The areas were Spiritual, Physical, Social, Emotional, and Intellectual, and I felt totally inadequate.  

As I listened to some talking about how they had been working on getting to bed by 10pm so they could be awake and alert, my ache replied, "I don't even get off work for almost four hours after that."  I'm a morning person, not a night one, but my work schedule says otherwise.  And that was just one area. 

I felt alone, and hurt, and unseen.  (And it was NO ONE'S fault, really.)  

And frankly, while the pandemic has been a time of growth for so many, it hasn't been for me.  I've been kinda stagnant, not trying, barely coasting, and often resistant.  Except in the intellectual area (hello new job and going back to school), the rest has not only been put on the back burner, the burner has been off.  

But a final comment, about doing your best, relying on the Lord's mercy, and knowing that He understands gave me the push to do something.  

No, I'm not going to share my goals.  Frankly, they're so simple it's a little embarrassing.  But I did write them down, and I'm posting them where I can see them every day.  And I will work on them.

Elder Bednar said, "I promise that as we both prepare and press forward with faith in the Savior, we all can receive the same grade on the ultimate examination of mortality: “Well done, thou good and faithful servant: thou hast been faithful over a few things, I will make thee ruler over many things: enter thou into the joy of thy Lord.”

So how about you?  What assembly are you needing?  And is there something that you can do about it?  And if it's simply to vow to face each new day, that's okay, because for some of us, that's a lot.  But it's still a choice.  

“Choices have to be made. Not making a choice is a choice. 

Learn to choose now.”

Elder Jeffrey R. Holland

2010, The Dry Run

 

2010, or 2020?

As I've looked at this last year, I've been struck with the similarities of our 2010-2011 year. 

That was the year Aaron was born.

Feb 2010:  I go in for a routine ultrasound.  Yes, I know they do an anatomy scan, and they look at aaaaallll the baby parts, but the one I'm the most interested in is his/her gender.  I've got fun ideas I want to try to put in place but will they be pink or blue?  Instead, I feel like I've been sucker punched and can't breathe, ever.  My world (and my family's) has just been turned upside down.

Feb-Mar 2020:  Rumors and rumblings of a new disease are growing louder, more persistent.  In the middle of a national ballroom competition, the world shuts down:  NBA, the competition (that we've been involved with since 2007 yearly, and even back when we were in college), school, church, just about everything.  Our world goes virtual almost overnight.  Life has changed dramatically.  

Spring 2010:  I continue to do research and visit more doctors than I've ever seen before.  I cry and I wait, we plan and re-plan, but mostly, I isolate.  I "bubble" myself as a defense against people who don't know, those who would say insensitive things that I'm just not up to dealing with.  In my sister-in-law's words, the "well-meaning weirdos."  

Spring/Summer 2020:  We watch the news, I do research, looking for scientific evidence needed to help protect us.  But science is a tricky thing, especially when confronting a new idea.  Hypothesis are formed, tested, revamped, sometimes discarded.  We've had a front-row seat to the research process never seen before by the public, and it's kinda messy.  Still, I trust it. Don't necessarily like what's happening, but when someone can admit that they were wrong with what was initially thought and show why and come up with another idea that (might) be better and start testing that, well, I'm more comfortable with that than simply sticking with something to save face.  

June 2010:  Aaron is at his first doctor's visit after leaving the hospital, and I'm still so, so, sooooooo overwhelmed and scared.  Terrified that he's going to die on me any day, and desperate to figure out how to save my little boy.  And I have No. Idea. how to move forward, so I ask:  "what do we do now?"  Dr. K. asks what my goals are.  Fair question.  Lots of parents want their child to experience as much of life as they can in their short time, so they do everything, go everywhere.  That's okay.  That's their plan,

But I told him, "I want to keep him here as long as we can."  

"Then don't take him out until after flu season." 

It's June, flu season just ended.  So I clarify, "Next May?"  

"Yep."

And so we did.  We locked down our house.  No one came in that didn't live here.  We didn't curtail the kids' outside activities much, but there wasn't the very high chance that they were coming into contact with a contagious virus multiple times a day.  We did wash well, and if someone so much as sniffled, they got a mask.

Yeah, a mask.

In 2010. 

Pre-pandemic.

If you were sick in our house in 2010 (and every year since then) you had two choices:  a mask or your room.  And it didn't matter which you chose, but you had to choose.  

But it was a balancing game, one we're still trying to play.  I've known people which medically complex, fragile kids who simply lock everything down, and have done so since their child was born.  And that's what they choose, and that's okay.  Just like I chose to keep Aaron isolated for his first year instead of taking him out.

But that's not what we've chosen.  We didn't save Aaron's life for him not to live it. So we've taken what we hope have been calculated risks, and we still do.  

He goes to school, and so do our boys.  We had our adult kids over for Thanksgiving and we will again for Christmas.  One doesn't even have anywhere else to go as the dorms are closed for the holidays.  But they've tried to be careful and they got negative tests before coming home. 

Yes, one son played rec soccer and another is playing rec basketball.  Does it scare me?  Yep.  Are they as careful as they can be?  Yep.  I even took Aaron to a couple of the soccer games (although we stayed waaaaaay away from everyone).  And basketball is only allowing the players, one coach, the refs, and maybe one videographer in the gym. 

I'll admit, this all broke me a few weeks ago when I thought about my son's senior year, how it "should" be, and how it is. I thought about the choir concerts and parties and just good times I had with friends my last year of high school, of the wrestling tournaments and dances, and I lost it.  He doesn't get any of those (okay, for him it's basketball and football, not wrestling) and that's not okay.  It's not okay in the same way that Aaron doesn't get to play Little League.  But it IS.  It's reality.  And sometimes it hurts way too much.  

I get it, believe me, I GET IT, when people say we're not guaranteed another year, another tomorrow.  I've been LIVING it for the past almost 11 years.  Christmas is four days away.  I'm just now counting on Aaron being here for that.  But at the same time, I feel like it's important to take the precautions now to help maximize our chances of having a next year.  

Because if we don't take them, we might have this year but no more after.  If we do, there's a much better chance that while this year looks different, we can have many more later.  And like 2010, that's a calculated risk I'm willing to take.  

To keep every cog and wheel is the first 

precaution of intelligent tinkering.

Aldo Leopold

Too Long, Again

 

I know, I know, it’s been a long time.  Sorry.

Aaron has been home, recovered (pretty much), had Halloween, a couple doctor appointments and gotten sick again. 

I said it’d been too long, right?

Anyway, he did manage to weather this one at home.  He did continue to run a fever for about a week after we got home, but it finally went away.  He got another ear infection (maybe twice?) and a cold and is now doing “okay” with the resulting increase in his lung pressures.  

He thinks he’s doing more than fine.  Something the last couple days has been hilarious.  I would agree, except he’s laughing so hard that he’s hyperventilating and throwing himself into an asthma attack.  This kid...  I tell ya. 

We did visit with another pulmonologist for a second opinion on his lungs and his vent settings.  The good news is that she believes we’re doing everything that we can do, and his settings are the best ones for him. That’s also the bad news.  There’s not a lot more that we can do to optimize his health.  It’s bittersweet.  

We’re still riding the Covid isolation rollercoaster that so many are on.  I find it more than a little frustrating to deal with those who think it’s no big deal because they’re all healthy and fine.  And it’s hard to have teenagers who should be going out, hanging with friends, doing activities, and can’t.  But I’ve seen the reality of an overcrowded ICU.  I’ve lived it.  I’ve been in a room built for one with two beds and two sets of monitors.  And I’ve watched as staff have rushed from one patient to the next, never really having the time to slow down.  During a (virtual) meeting at Primary’s two weeks ago, we learned that there are about 14 kids hospitalized, half of which had no pre-existing conditions.  And this is a virus that “doesn’t affect” kids.

In other news, William finally was able to have knee surgery ten days ago, and my dread of the dentist has caught up with me (again).  I had a root canal on Tuesday because, why not?  But we just keep moving on.  I’m getting used to working a swing shift and then trying to sleep for a few hours when the kids go to school.  Andrew is back on a hybrid schedule because there are too many cases at the high school but will return to a "full schedule" tomorrow.  Michael still goes to school on (this year’s) typical schedule of M, T, Th, Fr.  

And I’m trying to get through some pre-requisites for a master’s program.  

Yeah, life is kinda busy.  And challenging.  And still, it’s good.

I’m grateful for this time to be thankful.  A week ago, we watched the prophet speak and as he did so, I felt it touch my soul.  One of his challenges was to flood social media with grateful posts.  I don’t think that means we have to ignore the hard times or paint everything all rosy. But I know that as I read and looked at pictures, my spirits lifted.  I was reminded that during one of the very dark times in Aaron’s life, I wrote a post entitled “Happiness Is...”  That was another hard season.  Aaron’s heart was failing and we didn’t know if we had enough time left for his new medication to actually take full effect.  My father-in-law was in the hospital, and ultimately would pass away a few weeks later.  

But it was those little things, the lemon bars at lunch, a favorite cookie dropped off by a friend, the funny bear that hung in the partially constructed building across the way, the bed the nurses made up for me as we got to the room in the wee hours of the morning.  It was those things that helped me through.  And if I’d only focused on the hard times, I would have struggled so much more.

So today, I’m focusing on a couple silly puppies, a granddaughter that lives only down the stairs from me, a son who is willing to drop in to take care of a plumbing problem that truly, I should have been able to do but was beyond my emotional energy.  I’m grateful for sunshine and a job that I can work safely from home.  (I mean, you can’t beat a 20 ft commute.)  I have co-workers that although we don’t see each other in person (never have!) reach out and make me smile.  I love my comfy bed and the fact that my puppy lets me sleep even during the day and waits patiently (most of the time) to get her out.  

I’m grateful for the technology that allows us to still have worship services with others even when we’re not “with” them, and for sons who hold the priesthood and can administer the sacrament so I can renew my covenants with my Father.

And so many, many others things, family who prays for us and we pray for as well, friends across the country, the freedoms we enjoy here in this land.  Is it perfect?  Nope, but neither am I and I think it’s about the best there currently is.  

So there’s some of my ramblings.  Aaron is doing well overall, and we’re hanging in there.  And I’m grateful.

Counting our blessings is far better than recounting our problems.

President Russell M. Nelson

Pixie Dust

 

It’s happening, it’s really happening! 

We’re getting sprung this morning (or afternoon).

See that dark red vial of “stuff”?  It’s packed red blood cells, and I’m convinced, a bit of pixie dust.  

Aaron is doing sooooo much better.  In fact, if I hadn’t had to work last night, we probably would have just gone home. But by the time we made it through the 24 hours post-transfusion, there wasn’t time to get us home before I was working.  So he stayed the night one more time, but this time on the floor.  

I called the hospital at break and he was awake and playing on ten liters.  He was still on ten when I got back about 3 am, but asleep, so I asked if we could turn him down.  He ended up on 4, FOUR liters!!  And there he stayed until he was getting breathing treatments this morning when he came all the way up to FIVE!!!  

Right??

So we’re outa here.  He’ll be at home for at least the next few days and then after that, we’ll see.  He’s continued having afternoon fevers and those may stick around for the next few weeks.  In a normal year (what’s that anyway?) it’s not cool to send a kid to school with any kind of fever.  And this year?  Yeah, just not happening.  

But that’s okay.  We’ll be at home where we can see family again, I won’t have a commute, and I can fall into bed just after signing off work.  A real bed, you know, not the chair that folds down that has been masquarading as a bed for the past 2+ weeks.  It’s good, it’s very good.

“All you need is faith, trust, and a little bit of pixie dust.”

Tinkerbell