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