Tuesday, March 19, 2019

T18 Siblings and Life Lessons

Yesterday was Trisomy 18 Awareness Day.  Did I get pictures?  Not really, sorry.

Missionaries in Alexandria, LA
wearing blue for T18.







But his siblings wore blue.



His brother on a mission for The Church of Jesus Christ of Latter-day Saints (Mormons) even got his district to wear blue.  It was their P-day (preparation day, which means laundry, shopping, cleaning, etc) day, so they're wearing casual clothes, but he sent me pics.  ('Cause like I said, I didn't get them taken.)

Before he was born, Aaron's siblings (you know, those kids who were already here) had (relatively) normal lives, did sports, music, school stuff and had a mom who was involved with all of it.



Guess what, it's still that way, mostly.


When Aaron was born, and then when he was trached, I was told point-blank that he would ruin their lives.  It would be too hard on them to have a brother with such significant disabilities.  That Aaron would be too needy, it would be too hard.  Basically, it was wrong of us to try to make this work.

This is a common theme.  Parents are often told it's just not fair to the family to bring such hardship into their lives, especially if they have other children.

And it was hard, and it IS hard.  It's hard for them.  It's hard for us.  But you know what?  There were things that were hard before he was born, things they struggled with as kids, that we struggled with as parents.  If someone doesn't have difficult things in their lives, well, I guess they're wrapped in cotton and bubble wrap, and frankly, they're probably pretty boring too.  But honestly, I don't know anyone like that.

Ask a parent, any parent what kind of life lessons they really hope their kids learn, learn so that they're an intrinsic part of their fiber.  I'd be willing to bet that finding happiness, fostering close relationships, persevering, learning to overcome would be top of the list.

I asked my kids what lessons they've learned about themselves, or about life from Aaron.  What he's taught them.  Guess what they said?




Michael (12)  "He's taught me to always be happy.  He's fun to play with.  And he likes it when I bounce his yellow ball off his head.  He never gets mad at me."





Andrew (15)  "You can be happy even when things are hard or aren't fun."













Joseph (18)  "He is a rock. When I was preparing to serve I was really wanting to know that what I had been taught was actually the truth because I don't want to be saying things that aren't true. I wanted to know what was going to happen to him. I had always been taught that he already had his ticket. I really came to know for certain when I asked a preacher down here what he thought about it. What he said chilled me and solidified in my mind that a loving Heavenly Father would not send one of his children to hell because they are not able to be baptized. He told me in a very round about way that Aaron was going to hell. I thanked him for his opinion. We were in a recent convert's house and she asked me if that helped me and I said, "No, I already know where he's going." Growing up with him was a great way for me to "grow-up" quicker and mature quicker. I took more responsibility for my actions because of it and I always want to be there for him because he's my brother."


Matthew (20) "He's my inspiration for staying optimistic, no matter how difficult my circumstances are."





Jonny (23) "Aaron has taught me that you can live a happy life even while suffering through painful trials that are not your fault."

David (25)  "Aaron has taught me to persevere with a smile."
Mary (26) "Aaron has taught me how to hold onto faith and work through my fear.  Helping to care for him has pushed me to work through my discomforts to serve others.  He has taught me to greet my challenges with a smile (even though I still struggle with this) and how to take a deep breath when I am overwhelmed.  I have learned more about love from him than I thought I could.  So much of my life and worth is measured in how I contribute to my job and to society, but with Aaron, I have learned  how to value more the unseen contributions that shape how I  treat other people and the value I grant myself and others.



Deborah (27)  He brought our family closer than we've ever been before."







Yep, definitely ruined these kids.

Now, does this mean that life has been awesome for them?  Does it mean that they haven't struggled from time to time?  No, not at all.  We managed to somehow keep their activities going, but due in large part to a lot of support from other teammate's parents.  Mom hasn't been to nearly the number of soccer games as before, and has also missed concerts and other events.  Aaron has managed to land in the hospital on the major holidays, and most (if not all) the family birthdays at one point or another.  Sometimes it is hard!

But last week when my eighth grade girls were bemoaning combining with a seventh grade boys PE class, I started telling them about one of those little "Sevie" boys.  Told them that he saved his brother's life on more than one occasion.  That as a little preschooler, he knew his numbers between 80 and 100 before he knew 1-20.  That he was able to change out a trach, draw up meds with a needle and syringe, and give feedings through a tube in the stomach.  And they were pretty impressed!  (Although they still weren't jazzed about combining classes.)  

But look at what Aaron's siblings have learned.  Isn't this what we really want for today's kids?  Aren't these the kinds of lessons that today's youth (and today's adults!) need to know?  Happiness is what you make of it.  You're responsible for yourself and for others.  Look out for one another.  Life might not be what you hoped for, it might be hard, but you can still find joy.    And family is everything.


Now for a quick update about what's been happening here:  

When I last wrote, I talked about how Aaron had gotten sick, and with a pretty nasty virus at that.  But guess what??  He. Stayed. HOME!  We went through the usual ups and downs, but where we could handle it.  His pulmonary hypertension kicked in right on schedule, which also was a challenge, but one we could handle.  I think we might have bagged him a couple times, but that was all.  He really did well, and I have to think it was the change in food that let us deal with it here.

I did manage to get the flu about ten days ago.  THAT was miserable!  I pretty much lived either in my bed or on the couch for four days while Tamiflu worked it's magic.  If I had to go in Aaron's room, I gloved, masked and wore a robe that I only put on in there.  And I think we're far enough out that it's safe to say I didn't give it to anyone else.  Thank goodness.

And I think that brings us up to speed.  



Show me someone who has done something worthwhile, and I'll show you someone who has overcome adversity. 
Lou Holtz

Saturday, March 2, 2019

Changes Part 2, Or Aaron Gets Sick


Like I said before, after changing Aaron's food, he seemed to be doing really well, until Tuesday.

Tuesday morning he was a bit whiny, very tired, more than usual.  He went to school, but wasn't really into it.  That night, he was still a bit cranky and his heart rate was higher, too.  Oxygen was still good.  We didn't have any junk in his trach.  His lungs sounded amazing!  But still...

I gave him his Tobii and asked him if he was sick.  He pretty much ignored it and turned over to take a nap.  A little later, we could hear him in his room "speaking."  He was listing out everything that hurt.  Eyes, nose, face, head, hair, ears, nose (again), eyes, eyes, eyes, and then kidneys!  Kidneys??  Yeah.  First of all, apparently he likes the kidney picture according to one of his school nurses, and second, I think he was trying to say he just hurt EVERYWHERE!  Poor kid.

He slept well that night, and again, still nothing to indicate that he was sick.  I actually wondered if he might be just out of sorts, although he was sleeping more than usual.

Um, nope, he was sick.  The next day he started running a fever, and his eyes were watering a TON, plus his nose started running.  Yeah, sick.  And my mama heart was worried.  Sooooo many people around here have the flu.  Primary's is SLAMMED right now with all sorts of nasty bugs.  They've been double bunking in some of the PICU rooms, and they've also overflowed into the Neuro Trauma Unit on the same floor.  I've been told the infant unit is double and even triple bunking, and there has to be a medical consult to admit any patient who is over the age of 15.  It's bad right now, really bad.

And Aaron had a fever, and was miserable, and his nose had started....  You know where my mind was going.  I called his ped and got orders for a viral panel and we went down to the hospital.  Let me tell you, this kid has amazing patience and fortitude.  If you've never had a flu test, it's nasty.  They take a big ol' (sorta) flexible swab and go up your nose and to the back near your throat.  Yeah, YUCK!  He's had so many, but just grimaces and shakes his head after.  He's a trooper.


Good news is that it came back negative for flu.  Bad news is that it was positive for a coronavirus.  For most of us, that's a cold, but maybe a cold on steroids.  It's pretty rough.  The particular strain he picked up usually hits either the upper airway and sinuses (nose, eyes, etc) OR the lower down in the lungs.  Fortunately for Aaron, it's lodged in the upper airway.  Unfortunately for him, that means we're suctioning his nose a lot, and he likes that about as much as any little boy would.

But we're at home.  He's back to playing, throwing pies at his brothers and smiling.  As long as the pulmonary hypertension doesn't go out of control this next week, we should be sitting pretty.

And thank goodness we got his food changed over!



Enjoy the pie throwing! (He's using his
eyes to move the cursor.)

“The art of medicine consists in amusing the patient while nature affects the cure.” 
Voltaire

Changes, Nothing is as Constant as Change

I'm not quite sure how it's been almost a month since I wrote.  But you know how you have a ton of things to do, and because there's so much, you just don't?  And then you get even more, and so you "don't" some more?  Yeah, that might be what's happening here with Aaron.  There's been a lot going on.  Oh, not all at once (mostly) but over time it adds up.  I keep thinking, I then I don't.

But this isn't just to keep others up to date.  It's my way of documenting how things are going, what we're changing, what's happening between those awesome, terrifying moments when things are turning on a dime.  (yeah, read "awesome" with a touch of sarcasm, will ya?)

Anyway, a month or so ago, Aaron started struggling again and we didn't know why.  He's still on the vent 24/7, but he was having some funny desats.  Then he needed more oxygen.  After a little while, we noticed this was more obvious just after eating, but it wasn't necessarily resolving between meals.  He really wasn't plugging, although we had several trach changes in there just to make sure.  His dirty diapers were "okay" but pretty firm, and not as much as he should have.  And his lungs sounded great!  What??

It got worse.  We started needing to bag him occasionally, and then more often, sometimes once a day.  Or he'd be on the tank because he needed more than the ten liters our concentrator goes to.  We'd try albuterol to open his lungs more, suppositories to make sure he was getting "cleaned out."  Sometimes he seemed a little uncomfortable, but still.  More trach changes (with nothing at all in the trach).  What was going on?

It kinda came to a head last weekend.  He was just a mess as far as his oxygen went, but no other signs that we could see.  I figured we just needed to make a change, and went back to blending his food.  I still had some frozen bone broth and frozen fruits and veggies, and added in the other things I needed.

Now, I stopped blending for a few reasons, mostly my own sanity.  We found what we felt was a really good substitute, an organic, plant based formula that looked a lot like my own blends.  It does have more oils in it than mine does, but that was okay.  And for a while (like late last fall 'til now) he did well on it.  It's not hard to blend for Aaron, really.  It's easier than meal prep for the rest of us, but still.  It's One. More. Thing. on top of everything else.

Except I guess when you eat McDonald's Happy Meals every day, eventually your body isn't too happy.  And that's what I'm going to have to consider this substitute to be.

Given that the rest of his vitals were good, he looked good, he sounded great, he was active and happy and all that stuff, I decided that if I could switch him back to blended diet over the weekend, and just try to baby him through the next few days, maybe we'd be okay.  And that's what we did.  Saturday was kinda rough, but he did okay.  Sunday was a bit better.  Monday was even better.  I think we figured it out.

And apparently, just in time.

Yeah.

Tuesday... well....

I need to put these in two posts because this is already too long.  And like I said, I use the blog for my own records and I'll probably need to find this info again.  I promise, I'll get the next one done quickly.  (I hate books that don't really "end" and leave you waiting for the next installment.)

"Let food be thy medicine and medicine be thy food."
Hippocrates

Saturday, February 9, 2019

My "Vegetable"

Shirt says, "It wasn't me!"  I think it was.
Okay, in all honesty, I've had marvelous docs who never said this to me.  But so many moms whose babies have Trisomy 18 or Trisomy 13 are told this.

"Your child will be a vegetable."

"They'll never know you."

"They'll suffer their whole lives."

"They'll wreck your marriage."

"They'll ruin your kids' lives."

"You're going to make a child suffer just for you to feel good?"

And so on.

Um, yeah...  Let me tell you what my "vegetable" has been up to lately.

Watching fishies at Shriners
I'm still trying to figure out how to use Aaron's computer the right way.  But hey, we're having fun here at home with it.  And he's using it to communicate a TON at school.  In fact, his principal suggested we might consider a cute shirt that's floating around the internet.  It says, "Teacher, it doesn't matter where you put me, I talk to EVERYONE!"  Just know, he comes by it honestly.  I should have had one, too.

Anyway, back to my vegetable, who doesn't interact, communicate, or recognize anyone.

At home, we mostly are using his Tobii (computer) to reinforce skills needed to operate it.  He's got a couple games he enjoys playing.  One is just a cute coloring one that when he fills in the picture animates it.  Another is a space game that blows up asteroids, waves flags, or launches a rocket if he's patient enough to look at it for a four second countdown.  It doesn't take off very often.

But the favorite one is a pie throwing game.  He was "okay" with that one in the beginning but it was kinda ho-hum.  The game comes with six generic pictures of people and animals, but you can change those out.  He's got six brothers.  I decided to see if I could reignite his interest.  Can you see where this is going?  Except Michael decided he didn't want a pie in his face, and twice switched his picture for Aaron's.  It took me a couple days to figure it out.

That bright light in his hand? It's his
pulse/ox probe. 
It's supposed to be on his toe...

In the meantime, he was loving the game!  Pies flew fast and furious.  The first time I found his picture on there, I thought I'd programmed it wrong and switched it.  Then it happened again the next day and I realized what was happening.  What I didn't know was that he'd been playing at school, too.  And his teacher reported that he simply wouldn't pie his own face!  His brothers?  No problem.  Not his own.  He not only recognizes his brothers, he's out to get them, and he knows when it's his own face there, and that he doesn't want to get pied.

I had a conference with his teacher this week in regards to his progress at school.  She reports that he's doing very well, mastered all his academic goals.  One was shapes, being able to identify all of the basic shapes.  He did, but with a bit of an attitude, like "really, are you serious?"  The principal asked him what he thought, and he used his computer to tell her it was boring.  Then he told his teacher SHE was boring.  Yeah, we might have to have a conversation about manners...

He's good at math, but loves science.  They did a science unit on smells.  He asked her why water doesn't smell!!!!  WHAT?????  I don't think I even realized water didn't smell at that age.  Did you?

Anyway, we'll be putting together new goals, including reading sight words.  Right now, he selects pictures to put his sentences together.

And then for those who haven't been in state, we got a huge snowstorm overnight Tuesday into Wednesday.  It took me about 15 minutes to decide that Aaron wasn't going out in it.  Frankly, I'm in the group that says our schools should have been canceled anyway, but that's a different story.  (If you want to see some funny memes, check out this link.)  I still had to go to work because I'm a sub and living only a mile from the school, I knew I could get there, but I gave Aaron and Michael the day off.  When I got home, I asked Aaron if he enjoyed his snow day.  This was his response.


Yep, definitely not a vegetable.  Maybe a nut, but not a vegetable.  

"Our potential lies between what is and what could be."
Kim Butler

Wednesday, January 23, 2019

Adventures with Aaron

Our little goose is having quite a lot of fun lately.  Seriously, he is.  And he might be driving me just a bit crazy at the same time.  That's okay.  It's all good.  Really.

His neurology appointment went pretty well.  Assuming we get to the point where he can undergo anesthesia for his CT scans, we'll also tack on a brain MRI, mostly to get a baseline read of what's going on in there.  He had a few, several years ago, but that was before he was a year old.  Everyone's brains change a lot during those first few years, so since he's going under anyway, we might as well do this, too.  Anything else we can add on?  Maybe dentistry.  It's been a while there as well. 


Anyway, back to our monkey.  He scratched his nose a little bit and it bled.  Of course, platelets being low and all, it didn't just bleed a bit. It bled everywhere. And apparently, as soon as it would start to heal, it itched, so he'd scratch it again.  Finally, in desperation, I fashioned a bandaged that made things look much worse than they really were.  In my defense, I couldn't figure out how to put a bandaid over the bridge of his nose without covering his eyes.  He actually left it alone for about 24 hours!  And went around looking like some kind of warrior from the middle ages.  And laughing the whole time.

His latest trick involves purposely undoing his trach ties.  It's almost like he figures that it's no longer necessary.  Um, yeah, it is, kid.  We finally resorted to wrapping cloth tape around the velcro, because nothing else was working!  That velcro isn't wimpy.  It's hard to undo.  But when he's determined, it's hard to stop him.  Not a lot more heart-stopping for a mama than to walk into a room and see trach ties completely undone.  Without those, there's NOTHING holding that little breathing tube in place.

And it's January, so it's cold and snowy.  We try to keep the driveway clear, but that doesn't help the cold part.  Here he is all bundled up to get on the bus.

I'm so glad he's feeling better.  We managed to handle both his cold and the subsequent pulmonary hypertension bump at home.  More oxygen and slightly increased vent settings did the trick.  He pulled out that post-viral gastroparesis again, so he was on clear fluids for 24 hours and we're still doing reduced feedings.  Probably bumping them up again tomorrow.  We'll see how it goes.

On another note, I was reminded again yesterday how strange and weird things have become.  A few years ago I noted that  "the hard part about crazy, weird, medical life becoming your norm is that you forget that it's really not normal."  Well, yesterday I ran across an article on a medical blogroll I subscribe to.  (I told you I was weird.)  It was called "A Deep Dive into Pulmonary Hypertension."  And yeah, they did dive deep.  And no, there really wasn't much new info for us.  And I understood it.  ALL!!  Without a medical dictionary.  And while that was empowering, it was also kinda sad in a way.  It felt a bit isolating, actually a lot isolating.  

Aaron is 8 1/2 years old.  He should be running around, trying to keep up with his big brothers, pretty sure he's just as capable as they are.  I should be worrying about whether or not he's read his book for his book report due at the end of the month and whether he's actually cleaned up his room or just shoved things under the bed.  But he's not.  Instead, his big brothers and sisters have grown up fast, been exposed to things you try to keep from your child to preserve their own innocence, and those things have become their norm too.  

It sets us apart, this medical realm we inhabit as we try to straddle two worlds:  the world where there's homework and sports practice and chores, and the world where alarms tell you that your child or brother isn't breathing well or you mix up medicines and give them through a tube, or try to suction garbage out of the lungs through a different tube.  

But this is the life we were given, Aaron was given.  And don't get me wrong, we are so very grateful for it.  I was told yesterday that he is helping to change the face of Trisomy for the medical world.  I hope so.  His life, while not what I dreamed about nine years ago (we're almost to that day where we learned he would be "different) is still a good one.  

If quality of life is measured by how much money you make, or the job you hold, or the car you drive, his will never have any value at all.  But if it's measured by how much joy you get out of the life you've been given, I don't know anyone who has a higher quality of life than Aaron does.  And I guess that's what really matters, right?


He's growing up so fast...


"The quality, not the longevity, of one's life is what is important."
 Martin Luther King, Jr.

Friday, January 11, 2019

Our Medical Front News


We're back in school, back to work, back to the doctors...

Well, yeah, but they're routine (I guess) visits.  Follow-ups, you know.

Aaron saw cardiology just before the New Year and trach/vent clinic on Wednesday.  That one is a loooooong day.  Actually, both were.  The short version for those who don't have the patience or time to sit through long-winded explanations is that he's doing pretty good, actually, really good for him.  On all fronts.

Because of his pneumonia, he's back on the vent 24/7, and it's been interesting to say the least.  It's kinda a challenge, adding that weight back onto the wheelchair, making sure we've got enough battery power, checking the oxygen, 'cause he uses more when on the vent.  You know, logistic type things.  BUT he's happier, more awake, more interactive, more mischievous (not sure that one's so good). 


His echo (ultrasound of his heart) looked pretty good, about the same as it has the last few years.  His ejection fraction ( the "squeeze" of the heart) is still very adequate.  An echo isn't invasive.  They don't poke you or hurt you.  But this one took a while, almost an hour.  Almost an hour of helping him hold still (kinda) and keeping him from "helping."  That was hard.  I kept wanting to ask if she was almost done, but at the same time, I knew we needed as much good information as she could get so I didn't want to rush her.  But when you're holding down a wiggly kid and it's quiet and you're watching a screen (that you still don't know how to read in spite of watching soooooo many of these), well, it's exhausting, mentally and physically.  But in the end, Dr. D. was happy with the images.  He ordered a bunch of labs to check function, blood levels, etc, and they all came back looking beautiful.  So the long and short is that he's in a pretty good place.  And maybe in part because he's back on the vent.

See, pulmonary hypertension, high blood pressure to the lungs, it's complicated (of course, what isn't??).  Ventilators keep lung pressures artificially high, so if it's not needed, getting off is best.  But if the lungs aren't staying open, if they're collapsing down at all (atelectasis) it's harder for the blood to move through the tissues, further increasing the pressures.  So are they or aren't they?  That's the million dollar question.

With trach/vent we see pulmonology, special needs, and ENT.  There we talked about lung function, how it's doing, his ears, his scoliosis, nutrition, supplies, equipment, and nursing; all that.  Fun times, let me tell ya.

And how's his scoliosis progressing?  Well, we already checked that with Shriners so it was just a transfer of information. 

The ears?  Well, tiny canals, too small for tubes, and has his cholesteatoma come back?  Only true way to tell is surgery, and the next best is a CT scan. 


Weight?  He seems to have put on a bunch of weight in just a month, just over five pounds!  His calorie intake really hasn't changed, so is he retaining fluid?  I know he's "backed up." 

His lungs?  Again, is the vent helping or hurting?  Again, we probably need a CT to know more.

And then there's the semi-annual ultrasounds that he's supposed to have for liver and kidney cancer screenings.  Yeah....  I've kinda put them off.  It's been 18 months...

So that's the gist of what was covered in clinic.  The long and short is we're re-looking at his food and fluid intake, trying to make sure he's "going" enough and not holding onto either fluid or stool.  He sees neurology next week so we'll get another weight on him then.

We've got orders for ultrasounds along with one more blood test to check his vitamin D levels, trying to cover all the bases here.

The lungs and ears?  Well, right now we're in a holding pattern.  Come spring or early summer and no illness, he'll go in for a CT scan of both.  Because he doesn't have the ability to hold still and cooperate, he'll have to be sedated, and he and sedation don't get along real well anymore.  He'll stay on the vent until they can check exactly how his lungs are working and there's simply no way anyone wants to take him in without him being in tip top shape for several weeks.  I wouldn't allow it anyway.

Right now, he's not in "tip top" shape.  He's been sick again.  He came down with a cold on Friday but the good news is, he's handling this one pretty well.  He peaked Tuesday night into Wednesday morning and aside from being a bit more tired and a lot more albuterol (okay, and oxygen and slightly higher vent settings), he's carrying on like nothings's going on!

So that's where we are medically.  And congratulations if you made it this far.

We're working on his computer.  I'm trying to learn how to optimize it.  That will have to be the subject of a different post.  This one's too long already.  But suffice it to say, he's really, really good at throwing pies at faces.

Happy New Year, everyone!

"Medicine is a science of uncertainty and an art of probability."
William Osler

Thursday, December 27, 2018

Merry Christmas!

Okay, so I'm a couple days late.  Forgive me.

But it was a good Christmas, very good.  Ever since we moved here 14 years ago, our kids have had a slumber party in the basement on Christmas Eve.  You know, all in one spot, easier for the big guy to sneak in and deliver presents, easier for the early birds to roust the night owls.  But this year was going to be different.  We don't "have a basement" anymore since the newlyweds moved in.  But Deborah and Bronson decided they wanted to continue the tradition and invited their youngers to join them anyway. 

The upshot of that is we could still hear the party in full swing when we finally made it to bed.  No worries, Santa still came through even though I think some didn't sleep until almost dawn. 

Aaron had a very good night, and a wonderful day.  He was one of our sleepyheads, awake in the beginning but sleeping through a lot of the present opening.  Santa hit it out of the ballpark with him.  He opened a package of light-up maracas and has been making "music" ever since!  Between that and a little handheld "computer" that Gramma and Grampa gave him, he's been making sure we know when he's awake!

Speaking of computers, we've been working with his school and speech therapist for over a year to try to get him a communication device.  It's an eye gaze computer that will let him talk with us.  And it's coming today!!  Now Mama and Daddy need to figure out how to work it, too.  But this will be such an incredibly important tool for him.  He's been using one at school and apparently had a lot of success. 

Except, he's my kid.  You know, the kid that it really doesn't matter where the teacher puts them?  They still find someone to talk to?  Well, the report is that when they need him to pay attention, they have to remove the computer because that's all he wants to do, use it to express himself.  I guess if I had to go eight-plus years without talking to someone, I wouldn't want to be silenced either! 

All in all, a very good week.  He's home, he's doing well.  Sunday morning was rough, but since then he's done great.  Smiles are even back, most of the time.  (FYI: he becomes kinda sad when on steroids.) 

He is back on the vent 24/7, and will be for quite some time if not from now on.  We'll have to see how his lungs do in a couple months.  Yeah, it will take that long for them to fully heal.  We see cardiology today, trach/vent clinic (ENT, pulmo, special needs, nutrition, respiratory) early January, and neurology mid-January.  Wonder what he'll have to say to all of them... 


"Communication is something we all take for granted."
Miriam Margolyes