Saturday, March 18, 2017

Trisomy 18 - Joy in the Journey

Once again, I've got way too many thoughts going 'round, and no idea how to organize them.

It's Trisomy 18 day again.  And yes, Aaron is still here.  It's kinda funny to tell people that he's "incompatible with life" and watch them try to work how how the way they understand the meaning of those words can possible fit what they see in Aaron.

"Wait, but isn't he..., uh, doesn't incompatible..., um..." and you can see the wheels turning as they try to figure out if incompatible means something other than what they've always thought.

Nope, that's what it means, and yep, he's alive.

Recently Iceland proudly announced that no babies with Down's Syndrome had been born in the last five years.  If you look deeper, it's actually nine.  None, and they're proud of it.  That doesn't mean they haven't been conceived.  It means they weren't born alive.  And those babies are considered to be "compatible with life."  Does that tell you anything about Trisomy 18 or 13?  Or other disabilities?  And there are many here in this country, many medical professionals, who thing that's the best thing for all these babies and their families.

I disagree, on so many, many levels.  As I've said many times, if you measure a person's quality of life, and their contribution to society in money or achievements, no, he won't measure up.

But if you measure it by the joy they give and receive, the ability to inspire others and influence for good, these children, these "teachers of our souls" have tremendous worth.

And if you believe in the divinity of man, of the human soul, the potential is infinite.

So let me share a couple of funny snapshots of his life.

A few weeks ago there was a BIG (at least in our home) game on TV.  BYU was playing number one, undefeated Gonzaga.  (Most of us bleed pretty blue in this house.)  It was a rough start.  At one point BYU was down by 18.  But they battled back and people started getting excited.  By the time it ended with BYU on top, there was lots of yelling and jumping around and happy faces.  And Aaron was going right along with all of it.

He was laughing and smiling and waving his arms around, really getting into things.

And then Aaron went over and said, "you do know that was BYU and not Utah, right?"

It was like someone threw a switch.  His face went dead, no laughter, just a look of "you're kidding, right?"  Someone had just rained on his parade.  Oops.

When he was tiny, we asked someone where the handicapped parking was because we had a disabled child in the car and the seven-year-old piped up with "who's disabled?"  When he thought about it, he knew, but that wasn't something he ever really considered.  Aaron was just another brother.

About the same time, our four-year-old was looking through his own baby pictures and was trying to figure out how we hid his tubes and wires, 'cause that's what babies have, right?  It's just the way it's done.

And then last year, that four-year-old now nine years old said he was hoping someone he knew had a baby with T18.  When I asked why, he said it was because then they could have a great younger brother like him, and the family could have someone special in their home.

These kids, these kids whose lives I was told would be ruined (yep, I was told that) by their younger brother, have grown so much.  Their lives have not been ruined, they've been enriched.  All of ours have.

This past week, he's had some struggles.  I'm not sure what's changed exactly, but his lower GI system has slowed down again.  And when he gets "backed up" it puts pressure on his diaphragm and his lungs.  That leads to not breathing well, that influences his heart, and so on.  Fun times, let me tell ya.

I'm not the one you want to watch a medical drama series with.  I always laugh in the wrong places.  Music gets dramatic, voices get upset, and I'm laughing, 'cause I'm sorry, ain't nobody in a hospital gonna worry about oxygen sats at 90%, and they're certainly not going to intubate, bag them and put them on a ventilator.

Goofing off at school this week
But when your kid is having trouble getting out of the lower 70's on 12-15 liters, you start getting a bit worried yourself.  Except he's acting like me watching med shows and belly gut laughing.  I mean, how do you call 911 with that?  He's thinking it's the funniest show on the face of the earth.  Stinker.

There were a couple days like that, but he seems to have settled down now.

And today we'll be all wearing blue, even those who are playing on non-blue sports teams have blue fabric tied on their arms.

Let's see if we can turn things blue today.

Let the world know about Trisomy 18, about the good things, that it doesn't have to be incompatible with life.  And it certainly can be "compatible with joy."

Let us relish life as we live it, find joy in the journey, and share our love with friends and family.

Sunday, March 5, 2017

Heart Month/Trisomy Month

February has ended and March has begun.  (I'm told it happens that way every year, who'da thunk?)

Anyway, the effort for education and advocacy continues.

Still, today, in this country, families are told that their babies with Trisomy 18 and 13 won't live, can't live.  And some can't.  But other babies without trisomy also sometimes don't live, for a variety of reasons.  And many, many babies with trisomy are living.  

Then parents are told told that IF their baby lives, it will be awful, horrible, painful, a terrible existence, worse than death.  And that breaks my heart.

So that brings me to my goal for March.  Let me show you what life is like with Aaron.  It's not awful, horrible, not usually painful, and certainly not a terrible existence.  I've said before that if quality of life is measured by how much joy you get from life, Aaron's figured out the secret.  He's got it made.  It's not all roses, but whose life is?

This week has been a good week, a really good week for him.  I'm told that often it takes several weeks for a heart to fully respond to a new medication, and I think we're finally seeing some really awesome results here.  He's used less oxygen and been more playful than we've seen in a very long time.

There is a glitch of course (isn't there always?)  Remember back to the beginning of February when I talked about the blood in the trach?  Well, that resolved fairly well and I thought we were done.  But then on Thursday, it came back.  And it wasn't in response to suctioning.  He was gagging and retching, and suddenly, there was a lot of blood in the trach again.  A couple of catheters full of fresh, frank blood.  No bueno, at all.

So tomorrow he's going in for (hopefully) a quick scope of his trachea.  The concern is that it sounds like the trach is wearing away at the inside of his trachea, and since there are arteries in the area, well, 'nough said.  We need to make sure.

But still, he is so, soooooo happy!!!  So we're going with that.

Day 26. Inspiration. When I can't find my way, when I need more than I've got, I look to God and the Temple and remember how much He has already given me. 

Day 27. Joy. If quality of life is measured by the joy you find in the journey, Aaron has the best life of anyone I know. 

Day 28. Love. What else can I say?

Day 1. Life is beautiful (just like his shirt says).

Day 2. Trisomy awareness. Sleepyhead is NOT a morning person. But if you want a late night party, he's your man! 

Day 3. Trisomy awareness. "Hope is being able to see that there is light despite all the darkness." Desmond Tutu

Day 4. Trisomy awareness. Busy Saturday for this kid. A trip to Costco and to soccer to cheer on one of his favorite players! 

Day 5. Trisomy awareness. Got my smiles on for church! Happy Sabbath everyone!

The fight for the right to life is not the cause of a special few, but the cause of every man, woman and child who cares not only about his or her own family, but the whole family of man.

Mildred Fay Jefferson

Saturday, February 25, 2017

Two Weeks (Where Did the Time Go?)

Okay, so here's TWO weeks in review.

On the quick Aaron front, he's doing amazingly well at dodging the germs that seem to have taken up residence in our home, or at least in me.  And he's really good tempered about being more or less neglected by mom, too.  Big grins when he sees me, and plays quietly when I'm not in there.

This week saw a very successful science fair project (onto the state level, yea!!), Michael's Arrow of Light, and mama being diagnosed with pneumonia.

My view on Thursday, watching Aaron play
in his room while I rest in mine.
Yep, 'cause when you don't follow your own advice and slow down when you get the flu, you get blessed with pneumonia three weeks later.

I learned exactly how it is that Aaron can go from amazing to awful in six seconds flat (more or less).   I never made it quite back to 100%, but was pretty close, like 95% of all better.  Even Tuesday evening at the science fair, I only had a tickle in my throat.  By midnight, I knew I was in trouble, by 3 am I was beyond miserable.  So I dragged myself into the doctor on Wednesday.  Yep, fever (I really didn't know) and "significantly diminished lung sounds on both sides."  Thank heavens for antibiotics.  By Thursday I almost felt human again.  I'm really run down and have very little extra energy, but I can see the end in sight now.

So here's the last two weeks of instagram posts for heart month.  The video for today is especially cute.  Make sure you have the volume on, it makes a big difference.  😊  Oh, and just an FYI, pretty much all the pictures are from times past, not this week.  Kinda a mini trip down memory lane.

Day 13. Doctors. Aaron sees six doctors and two other specialists, and that doesn't begin to count all the residents and hospitalists that cares for him when he's in the hospital. Then there are the therapists he works with. And they all seem to love him! He's also been discharged from at least five other services (that I can remember). This kid needs his own social secretary. ☺

 Day 14. Nurses. Aaron needs skilled care. If I'm not with him, he has a nurse. He has nighttime nurses so I can sleep and school nurses to keep him safe at school. He rarely has an emergency, but when it happens, there's little to no warning. I'm the hospital, they are the doctor's eyes and at home or school, they're mine. They hold his life in their hands. 

Day 15. Change. Aaron has grown from a tiny 4 lb 15 oz baby to a chubby 45 lb first grader with a winning smile that charms everyone he meets.

Day 16. Fear. Fear lurked most of Aaron's first year. Only 5 to 10% of his peers celebrate a birthday on this earth. Now it's mostly shoved to the back of my mind, but still comes out when his sats drop, when he gets sick, when the doctors want to have "the talk". But I refuse to live with it.

Day 16. Courage. This is the face of courage. Always trying, never giving up, always moving forward.

Day 18. Hope. We were given our first glimpse of hope along with our Trisomy diagnosis. As the doctor and I spoke, I told her that somehow I felt that while his life might be shorter than we wanted, I felt it might be measured more in weeks and months, rather than hours and days. And she responded, "Somehow, so do I." 

Day 19. Scar. Aaron hasn't had heart surgery, but he has a similar scar from his g-tube surgery. Most have it though laparoscope, but when they tried, it wouldn't work. So they closed the initial sites and opened him up. A year or so later, I was trying to clean up the tape residue from a recent admit and some would NOT come off. After several minutes, I realized I was trying to scrub off his scar. It never did come off. 

Day 20. Grief/Loss. Grief takes so many forms. Loss of the life you thought you'd have. Loss of your dreams. And eventually the loss of your child. I grieve with so many friends, some bring me right to my knees in tears. I wear a butterfly always in remembrance of little ones called Home too soon.

Day 21. Family. What more can I say? It's crazy, but they're all mine and I love them. They've been on Aaron's journey from the start and they know how it will end, but that doesn't stop any of us. It may be hard, but that's only made us stronger.

 Day 22. Friends. A knock at the door, and three little neighbor girls were there. They'd been learning about The Comforter, and made a comforter for Aaron. I walked into his room later and found him playing Peek a Boo with it. These friends brought comfort to this mama's heart. 

Day 23. Future. "I got a future so bright I hafta wear shades!" We really don't know what his future will bring, but we will face it with hope and courage and fortitude. 

Day 24. Strength. Strongest person I know..

Day 25. Music. Aaron has always loved music. 
This is a couple years ago at a ballroom competition. This kid has moves! 


"Some memories are unforgettable, remaining ever vivid and heartwarming!"

Joseph B. Wirthlin

Sunday, February 12, 2017

The Plague

Okay, not really.  But it kinda felt like it.  I spent the last week sicker than I remember being in a very long time.  And it looked like a hazmat situation every time I went into Aaron's room:  mask, gloves and robes, after scrubbing and using sanitizer.

Seriously, we really need to keep this guy well!

Except it may not have happened.

We do have some of the garden variety sniffles and coughs going on in the house as well though, and if that's what he's picked up we can probably manage that at home.  If it's what I had, well, we're probably going to find ourselves on "vacation" again.

But in an effort to stay home, we're pulling out all the stops.  I've got a tank that will let me put 15 liters of O2 through every minute.  We've got a shake vest that makes him jiggle like jello trying to move stuff around.  We've got albuterol (all-better-all).  He was on 15 liters for a couple hours this afternoon, but we've managed to scale back to nine on his concentrators again.  He usually gets shake vest treatment twice a day, but I've upped that to every four hours, so six times a day.  He's also getting albuterol every four hours (at least).  I figure if the hospital is going to do the things I can also do at home, let's do it!  It's just if he gets to the point where our ventilator won't support him, then we'll have to go.

But for right now, we're hanging tight.  And I'm really hoping that by being aggressive, we'll manage to make it work.  Here's hoping!

And here's this week's heart posts.  Next month is Trisomy awareness month. (You know, March, third month, trisomy, three chromosomes.)  I'd kinda like to try to do something on Instagram/Facebook each day for March, too, if I can come up with ideas.  So if there's anything you'd like to know, like to see, whatever, PLEASE, let me know.  Shoot me a text or email or respond on here.  I'm pretty good about answering questions, it's just coming up with the questions in the first place.  And as far as Aaron goes, I'm also an open book.  I figure the more people know, the more awareness is spread, the better chance at life kiddos like him have.  So give me suggestions or ask away!!

Day 6. Coping. Man, this is a loaded one. Most of the time we cope fairly well. Preparation and anticipation work well. So does chocolate. ;) Sleep, talking things out and blogging are other ways I process.  

Day 7. Day of Birth. Aaron wasn't breathing at birth. Many hospitals wouldn't have tried to help him, but ours did. We had no idea what to expect, if he would be born alive, and if he was, if he would live for more than a few minutes, so all the kids were there before they started the C-section. We're so grateful for all the help and support we were given.  

 Day 8. Milestones. In the beginning, I refused to think of milestones. He wasn't going to live long enough. Now he's lost teeth, goes to school, smiles and laughs and grows. When we brought him home, the tiny outfit was too big. Now he barely can squeeze into the larger one.

Day 9. Hospital. Aaron has been to a few hospitals, but only one is really equipped to handle him. Also known as "The Hotel on the Hill," his "Vacation Home" and "The Clink," Primary Children's Hospital is his home away from home. I haven't counted recently, but I think we're over 300 days total.

Day 10. Echo/EKG/X-ray. We use a variety of tests to check Aaron's heart. These are the noninvasive ones, or the "no ouchie" ones. The echo checks his heart function, how well it's squeezing and moving the blood around. The EKG checks the electrical side of things. And his X-rays look at his heart size (smaller is better here, his is moderately large), his lungs, and his scoliosis.

Day 11 Heart Mom. It's funny, it actually took me a while to realize I was a heart mom. ♥ But while Trisomy 18 is his primary diagnosis, for Aaron, the biggest threat is the way it's affected his heart, and mine.

Day 12 Heart Dad. Not only does his heart ache, he also has to figure out how to help the other kids with their own broken hearts. See, the heart kiddo isn't the only child in our home, and isn't the only one needing extra time and love. 

Health is not valued 'til sickness comes.
Thomas Fuller

Sunday, February 5, 2017

Heart Month and Crazy Times

This week, kinda like the last several, has been busy.

Last Friday, we started suctioning blood out of Aaron's trach.  Not a lot, but some.  And it continued off and on for the next few days.

I've also been subbing full time.

So Tuesday morning, about 15 minutes before I walked out the door, Aaron decided to up the ante.  He'd had a good night, but that morning he started coughing up blood, quite a bit, and it was dark red  and fresh.  Who's supposed to sub for the sub??

I called up to the hospital and got a respiratory supervisor who knows us (bonus!) and ran things past him.  After talking, he was concerned, but said that if things didn't get worse, AND they got better as the day went on, AND his sats, heartrate and everything else stayed stable, we could probably skip coming in.  But if anything changed, we were to get up there ASAP, and if they changed in a big way, we needed to come fast.

So I had a talk with our little man, left him with his nurse, and went to work.  Fun times.  I let the school know what was going on and they were very sympathetic and cooperative.  (It might help that I've had kids there since we moved here in 2004.)  I taught four classes of seventh and eighth grade English students what the word "euphemism" meant, and explained that I had a little guy who sometimes "decided" that breathing was optional, and when he misbehaved, he didn't end up on time out, he ended up in an ambulance, or even a helicopter.  I don't think they'll ever forget what euphemism means.

He was actually asleep until Mom took a picture with a flash.
Totally chill.
At school, his nurse put others on alert as to what she needed if he "misbehaved" as well.  And you know what?  He didn't!  It was like he wanted to know what the plan was if there was a problem, and with one in place, he relaxed. We've continued to have some blood from his throat/lungs, but not as much.  There have been some clots that we've pulled out, so I'm hoping that means that it's healing up in there.

Good thing he settled down, too.  By Thursday, I was thinking I might be coming down with something.  By Friday afternoon, I knew I was.  I think I've got the plague.  Okay, no, it's really not that bad.  Yes, I'm a wimp.  But I've spent the last two days trying to hack up a lung or two and my throat has been really raw.   I'm terrified of what happens if he gets this.  I mean, it settled in my throat and tried to close it off.  It would be so much worse for him.  And it's not like I'd be welcome at the hospital with all my germs.

So I've been in bed most of the last two days and I think I'm actually on the mend.  Hoping to kick this out before Wednesday, when he's got appointments with four specialists at Primary's.

February is also heart month.  You know, Valentines, Hearts, you get it.  So I'm trying (we'll see if I make it) to post something on Instagram each day regarding his heart.  You can follow along at  Here's what I have so far:

Day 1.  Our Heart Hero.

Day 2. Aaron has holes in his heart which in turn cause his Pulmonary Hypertension, the biggest threat to his life. When his sats drop for the space is only a few heartbeats, we know it's his heart acting up, not his lungs.

Day 3. This is a two week chart for Aaron's medications. Each column is one day. Of those meds, 12 are directly related to his heart.

 Day 4. Weight gain. Aaron was tiny: born at 4#15oz, he dropped to 4#2oz and came home at 4#6oz. Before his trach and g-tube, he struggled to gain weight. 18 months later, the doctors were talking diet. Now he's almost grown into his weight and is about 45 pounds.

Day 5. Doctor appointments. Aaron sees 8 different doctors (down from 15!). Fortunately, we can see a few of them all at one time, or just once ot twice a year. And I'm the one common factor in all these relationships. Just call me Dr Mom.

Love is a symbol of eternity. It wipes out all sense of time, destroying all memory of a beginning and all fear of an end. ~Author Unknown

Sunday, January 29, 2017

My Son

I'm not quite sure where to take this.  (I know, you've heard that before.)

This week has been quiet (relatively speaking) on the homefront.  Aaron is home, yes, still.  (Big grins.)  It's been over three months since his last discharge.  William told me not to say that, why did I have to say that??  But it's true!  And it's worth noting and celebrating.  While it's not our longest break (yet), it's been quite a while since we've gone that long without a stay at the "hotel on the hill."

But there's a lot that goes into keeping him here, safe and happy.  And with all the noise about cuts and changes, well, this mama is a little bit nervous.  See, it's exactly the kind of support that is being scrutinized that makes his life possible.

Yes, there used to be (not long ago) pre-existing condition exclusions and lifetime caps.  And most of us really didn't give it a lot of thought.  Well, maybe the pre-existing conditions, but who was ever going to need a million dollars worth of coverage in their lifetime?  Frankly, anyone dealing with a major illness or injury.  Lifeflight can cost $12,000 to $25,000, and that's before you even get to the hospital.

There, an average ICU stay is a minimum of $10,000 a day.  That doesn't include any surgery, specialists (and yes, if a specialist looks in on you, that's a charge) or that type of thing.  If you're really critical, it's more.  There's the OR time, anesthesiologist, surgeon, assistant surgeon (yes, they bill separately) and so on.  Then there's the follow-up after discharge, any special equipment, medication, etc.

So if you end up with a few broken bones, an appendectomy, the run of the mill type of things, well, you're probably still safe.  But now throw in a premature baby, cancer, any really bad car accident or skiing accident, and you'd better worry.

Our last hospital stay, you know the one where I worked the phones so hard to get out of there sooner rather than later, well, that was a cool $100,000.  Yes, that's five zeros.  And we spent no time in the ICU.

Here at home, I do most of his cares.  Just yesterday, I spent an hour drawing up his inhaled meds and cutting the ones he takes half a time so I wouldn't have to do that while I was also working.  But he's got equipment that we will never own, no matter how long we use it.  Ventilators and oxygen concentrators are rented because then the company maintains them.  He takes between 27 and 31 doses (depending on the month) of 18 different medications or vitamins per day.  And yes, we've occasionally tried to wean him off of some of them.  It's not pretty.

This kid is expensive, with a capital E.  And thank heavens for a Medicaid waiver that helps provide for him.  It doesn't cover everything, but most of it.  It also covers his nursing.  Some states, many states, would cover him at 20 to 24 hours per day given all his medications, therapies, and interventions.  Because of recent additions to his medications, he now qualifies for ten hours a day, up from eight.  And you know, that's okay.  We can totally make that work.  I'm substitute teaching now, so I'm at work while he's at school, and he's got a nurse for that, and then we have our nighttime hours covered.

But without nursing at night, I'm not sure what we would do.  We were without coverage for eight nights this past month and it was hard, really hard.  See, among those 27-31 doses, he gets ten between the hours of 2:00 am and 5:00 am, plus a shake vest therapy.  Trust me, working a full day on either side of those nights wasn't pretty.  (And I wonder why my headaches are back?)

But here's the thing:  Aaron has worth, tremendous worth.  Just by himself, his soul has value.  And I don't think you can put a price on it.  This child, this very handicapped, limited boy, has been an influence for good for people around the world.

In the beginning, it was just our family and a few close trusted friends.  It was so raw, so painful, so incredibly heartbreaking, but it drew us together.  We rallied around this tiny unborn child and put aside our selfishness, strengthened each other, called upon God for hope.

Then he was born and word trickled out to the community, our local community, and he inspired others here.  As I reached out for support and wrote about him and our journey, others were touched.  I initially wrote on a Carepages website and titled his page "Gift From Heaven."  We outgrew that site when he was about nine months old and I started this blog.  In the past almost six years, the blog has reached I think nearly every single country in the world and has had almost half a million hits, over 16,000 in December alone.

So not only does he have worth just by virtue of his "being," he has influenced countless others. He gives hope, joy, inspiration.  And in my view, that is exactly what this world needs, someone to inspire us to be our better selves, to give to others, to smile more, love more, remember faults less and to try harder.
Coming home from school.

And Aaron?  What does he think?  Well, he just keeps on going.  This week while I was drawing up one of his medications with a needle, he reached up and hit it and sent it flying, and then laughed at me.  No, he doesn't get injections, so it wasn't going to hurt.  He was just playing and thought it was funny.

He's recently discovered his right foot.  Up until now, he's always worn socks.  For him, that's a comfort measure.  Most of the time his IVs are placed in his feet.  So if he wasn't barefoot, there was no chance for an ouchie.  But he's taking his sock off now, over and over.  And it's pretty fun.

He's been at school, where he's hit all of his IEP goals for the year, which means he'll only be in summer school two half days a week, and that for socialization.  And he still thinks that the ideal sleeping hours are 2 am to noon, just like some of his siblings.

He loves his life.  He lives it to the fullest of his ability.  And he deserves to have it supported.

A great soul, with a great purpose, can make a weak body strong and keep it so... 
~Mark Twain