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

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.

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

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

We’re Here! (Home!)

We did it, HE did it!  We made it home yesterday, even in time to surprise Michael and pick him up from school.

So much to do, food, meds, laundry (okay, haven’t actually done that yet).  I can’t find my room, but I did find my bed. Woke up this morning in my very own bed.  Glorious!!

He’s not “all better” yet.  He’s still struggling.  We’re playing with vent settings because sometimes one works better, and other times, another.  One lets him generally oxygenate better, but the other allows him to move the “junk” that’s still in his lungs and get it out.  So we alternate.

He’s still on a lot of breathing treatments and is half-way through a course of steriods.  Ah, yes, steroids.  They do amazing things for his breathing.  But they also make him sad.  Sigh...

But still, home!!

It’s good.

“What is Christmas? 

It is tenderness for the past, courage for the present, hope for the future.“

Agnes M. Pahro

Groundhog Day

I didn’t realize it had been so long since I’d updated on our little Superman.

We’re still here, still hanging out, still on way too much oxygen.

Every day seems to go the same way.  We’ve weaned the oxygen down to a manageable amount overnight, and the plan is to watch, try to keep him there, and go home in the morning.

But then the day happens, I guess you could say, “life happens.”  He wakes up, plays, needs more and more (and sometimes more) oxygen.  And we’re quickly back to where we’re maxed out on what the home vent can deliver, much more than we can deliver for any significant amount of time at home.

He’s finished his antibiotics.  He’s pretty much “hanging out.”  We’ve tried increasing his PEEP (the pressure that’s always in your lungs) to see if that helps.  It really hasn’t done much at all.

Albuterol has helped, kinda, but last night we decided to up it to see if maybe it could do more than it was.  He started getting it every three hours instead of every six, with the plan that if it did seem to improve, we’d consider steroids as well.  If he’s not oxygenating because his lungs are reactive (asthma), steroids can also help.  But the downside is that steroids decrease the body’s immune system, making it harder to fight off infection, and easier to get one.  And that goes for both bacterial and viral infections.  (Can I just put him in a bubble?)

Albuterol did seem to help, quite a bit overnight, so now we have orders for a five day course of steroids.  IF he reacts the way he has in the past, we really might come home tomorrow.  Pretty big “if.”

But as William keeps reminding me, we’ll just do what is best for him.  We’ll give him the time he needs, be grateful for the time we have with him.

Last night I climbed in bed with him to sing him a bedtime song.  Big mistake if I thought it would help him go to sleep.  Instead, he took it as a sign that the party was just getting going!  Funny kid.  So we sang for about an hour.  But as I sang the last line of “Edelwiess” I choked up.  I have no doubt that this little boy will bless our home life forever.  I hope we have many more days with him here on this side before he goes “home.”  But I do know he’s ours, forever and ever and ever.  And the lessons he teaches us will be with us just as long.

Edelweiss Edelweiss

Every morning you greet me

Small and white

Clean and bright

You look happy to meet me

Blossom of snow may you bloom and grow

Bloom and grow forever

Edelweiss Edelweiss

Bless my homeland forever

The Sound of Music

Slow and Steady

He’s making progress.

We’re still here, he’s still not the way he’s “supposed” to be.

But he’s getting there.

Yesterday he had come down far enough on his oxygen to try his home support settings.  They worked, but he promptly went back up on his oxygen.  We also started pulling all sorts of nasty stuff from his lungs.  The thought is that with the higher settings, we weren’t able to mobilize it because his lungs were hyper-expanded.  They didn’t have enough room to really collapse enough to be able to move that junk.  But on the other hand, without the hyper-expansion, he wasn’t able to get good gas exchange.  You know, good air (oxygen) in, bad air (CO2) out.

We didn’t make much progress on his oxygen yesterday, but today has been a bit better.  He’s down to 65% right now, awake and playing.  That’s a really good sign.  Once he can be stable on 60%, we can try the home vent.  Then it’s working our way down to what we can do at home.

I’m a little nervous that we haven’t had any setbacks at all, but I’m also hopeful.  He’s now at day 6 of this whatever it is.  Just because the viral panel was negative doesn’t mean there’s not a viral component.  It means that it wasn’t one of the ones they can test for.  But he’s also switched from IV antibiotics to a g-tube one.  In fact, it’s the yummy pink stuff we used to take for ear infections and such. Too bad he doesn’t get to taste it.

So we’re still waiting.  He’s playing, watching TV, being silly with the nurses.  I don’t think we’ll be home this weekend, but I’m optimistically hoping for Monday.  Maybe not.  We’ll see.  But we’re still 10 days out from Christmas.  I’m confident we’ll be home before then.  Until then, we’ll make the most of our time here.

You usually have to wait for that which is worth waiting for. 

Criag Bruce