Sunday, August 27, 2017

Too Smart

So many people think that because Aaron is so delayed, he's like a baby.  Yeah, not quite.  He's seven, and very much seven.

This week he came up with two new "tricks" that we could have done without. 

Wednesday, he had his annual scoliosis screening.  Yep, it's progressed some more.  40 degrees now.  Other than yet another thing weighing on this mama's heart, it's not a problem, yet.  If he sat independently, they'd start considering him for surgery at about 55 degrees.  Because he doesn't (yet) they won't worry until he's closer to 80 or 85 degrees curvature.  By that point, it will be crushing his heart, lungs and other organs.  I'm just not going there now, I can't. 

But I guess he got bored on the way home.  Shortly before our exit, I hear a metal clunk.  What?  Was that a seatbelt?  I reach behind me and grab it, and guess what!  It's unbuckled.  So I'm wondering, did I just not fasten it well?  How could I do that?  I've got to be more careful.  Weighing my options, pulling over on the freeway and taking our chances that way, or just continuing a few more miles to the exit, I went on. 

At a park and ride, I opened his door, buckled it firmly, and told him, "no funny business."  He grinned.  I should have known then I was in trouble.  About three more miles down the road, I heard the "clunk" again.  He did it again.  Not cool.  I'm impressed, but not thrilled. 

Then today, while I took a nap, Andrew was keeping an eye on him.  He alarmed low sats over and over and over again.  As soon as Andrew walked into the room, he was fine.  So big brother decided to try an experiment.  He walked out of the room, but peeked around the corner.  Sure enough, Aaron reached down, grabbed his pulse/ox cord and started yanking on it until it started alarming.  When Andrew showed up, he dropped it and started playing.  What a kid! 

In other news, school started this week.  Aaron is in 2nd grade.  I can't believe it! 

I found his report from his teacher regarding those eight days he got to go to summer school.  In group work reading, he identified the main idea 100% of the time using pictures. 

He was able to answer who/what/when/where/how questions about 50-60% of the time. 

He's starting a new writing program that he's interested in, but still not quite sure what he's supposed to do. 

He loves school.  He learns at school.  He is not a vegetable, he's an intelligent child who is trapped in a body that makes it hard for him to communicate. 

But hey, he has fun, lots of fun.  For all his limitations, he's not limited in his joy and passion for living.  It seems that no matter where we go, what we're doing, he's excited to participate.  And that makes life better for everyone around him, too. 

"On the whole, the happiest people seem to be those who have no particular cause for being happy except that they are so." 
~William R. Inge

Sunday, August 20, 2017

Seeing Clearly

Soooo, we got glasses this week.

I worried that we would have a similar battle with them that we fight with the hearing aid, but figured, maybe not.

Um, nope, not at all.  Oh, he fusses with them a little, pulls them down, or peers over the top, and then laughs when we adjust them.  But mostly, he just wears them and grins.

And even more, it's what we're NOT seeing.

All his life, he's rocked his head back and forth, especially when bored or tired, and especially when upright in his wheelchair.  It's actually a bit irritating to hear the bonk, bonk of his headrest as the post hits against his oxygen tank.  He also hit his head with his fist.  We figured they were just stimming (stimulation) behaviors, you know, just things he did over and over, and were grateful that they weren't more destructive, like gouging out his teeth or other things. But still....

We picked up his glasses on Wednesday morning, and we haven't seen ANY OF THIS!!!

No head rocking, no head banging.

I found a picture that showed the difference between an uncorrected and corrected astigmatism, and yeah, if that's what he was dealing with, I'm so sorry!

But we seem to have fixed it.  He's also sleeping less.  Hm, seeing better, probably not having headaches, less tired...  Yeah, I think it could all add up.

Plus his brothers have nicknamed him "The Professor" because they say he looks so smart.

In other news, we continue to battle the after affects of his cold, but it doesn't seem to slow us down much.  There's just too much to do, too much to see.  Today I even managed to put the bag on and help him breathe during church.  Not sure more than one or two people even noticed. Our new slogan:  Have bag, will travel.  What do you think?

We had a second soccer tournament this week and the annual local SOFT picnic.  The tournament went well and it was so fun to see our friends!  We even met a little girl from Aruba with full T18 who is battling to be given permission by their government insurance to have her heart fixed. 

Yep, it's a reality.  It's not just the kids in the news.  Many children and families fight for care.  It's not even a big surgery, at least as far as cardiac surgeries go.  But that darn "incompatible with life" label gets in the way.  But those eyes, those oh-so-soft curls, the cute noises she makes.   Trust me, she's a treasure.  All our kids are. 

And it's so refreshing to get together with friends who also juggle special needs along side of typical kids and just life! 

Here he is after swiping his brother's (mostly empty) soda can.  He's totally a tease!  Pretending to do what he watched his brother do but only so far.  He'd put it near his mouth, but in?  Nope, no way.  Which is probably good as he wouldn't have known what to do if it had landed in his mouth. 

Yeah, our kids are different from other kids, but they're still kids!  And if you saw them pulling at each other and interacting with everyone, you'd realize that, underneath everything, they're more like other children than not. 

 Those who see the world through the lens of love are true visionaries.
Bryant McGill

Wednesday, August 16, 2017

No Heart Cath (yet)

At big brother's soccer tournament.
So today was supposed to be that day, the day Aaron went in, they put him under and threaded a small tube up through a blood vessel near his groin into his heart.  It was supposed to be today.  The day I've been worried about for the past month or so.

Except it's not. 

You know those back-to-school colds?  The ones that cause the sniffles and sneezes and coughs just a few days after everyone scurries out the door? 

Sometimes breathing is just HARD!
Well, this kid decided to get his out of the way early.  At least I hope that's what he decided and we don't have another waiting in the wings.

And for Aaron, a cold messes things up.  It messes up his heart, his lungs, his ability to tolerate anesthesia.  If you've ever had surgery, you remember the big form someone goes over with you regarding the dangers of surgery, the risk (teeny) of death, of having something else go wrong, or prolonged issues.  But in reality, it's a non-issue, we sign, we go on, and it's barely a blip on our radar.

Onsies made from Grandpa Bear's old t-shirts.
But with Aaron, in addition to that talk, we also get the "and of course you know, that for Aaron, those risks are exponentially higher."  In our hospital, they have a minimum time you have to be in recovery before going home.  It's something like 90 minutes or so.  When he was younger, we'd hit a timer as he rolled into recovery and were on our way out the door when it went off. 

But lately, it's gotten harder. 

In April, we worked for several hours to get him stable enough to go home after his trach revision.  I thought we were there, we left.  And we came back a couple days later.  Didn't work.  That lovely combination of anesthesia, asthma and pulmonary hypertension. 

Now throw in a cold, junky lungs, runny nose, and well, nope.  We weren't doing it.  Not yet.  Now the goal will be October 19th, during fall break, 'cause we just know how to party.

This last week has been a little intense.  But it's been intense here, at home.  We moved to doing breathing treatments and vest therapy every 4-6 hours.  His pediatrician put him on an antibiotic that's shown some promise in reducing asthma attacks due to rhinovirus.  We've bagged him, repeatedly, sometimes over the course of several hours.  I packed the hospital bag, and when I pulled things I needed out (toothbrush anyone?) I put it right back.  But we stayed HOME!!! 

Seriously, major victory!!! 

I channeled some of my nervous energy into making a few more onesies out of t-shirts my mother-in-law gave him.  I made several days worth of his food to freeze (you know, in case we didn't stay home). 

And then as he started to turn the corner a bit, we ventured out.  He went to all three days of a soccer tournament, although the first day had me bagging him at the field.  Got some strange, worried looks on that one.  Me, I was more worried about the big, dark clouds overhead that ended up clearing the games for an hour. 

Waving at his buddies, the paramedics.
He went to a couple parades, complete with noise cancelling headphones.  He waved at the ambulance, and I told him not to be getting any ideas. 

Yesterday we went to the zoo where he saw elephants, fish, and a giant (fake!) spider.  Yep, I think we got this. 

Tomorrow we've got another soccer tournament, a picnic, and we start the rounds of back-to-school visits.  He starts next week.  It's all good.  It's very good.  And we'll tackle the heart cath and the anxiety that goes with it later.  Enough later that I'm not even going to think about it for a while. 

Life consists not in holding good cards but in playing those you hold well.
Josh Billings

Friday, August 4, 2017

Not Quite "Easy-Peasy"

So tired.
Soooo, this whole "quick hospital trip" didn't go quite as planned.

Oh, it was still pretty quick.  Some were hoping for 24 hours but everyone planned for 48, just in case, and it was only about 54.  Not too shabby, especially when you consider that everything in a hospital runs on something called "hospital time."  For the uninitiated, it has to do with the ebb and flow of multiple patients being cared for by a variety of staff, all of whom have to line up everything at just the right time, in addition to the emergencies and unknowns that go along with life.  Yeah, "hospital time."

Anyway, we got there on Tuesday morning and Aaron was in fine form.  He was hooked up to the vent on our original settings and we waited for pulmonology to get involved.  About 1 pm, we had our first orders and made the first changes.  These involved similar settings to what we had after his sleep study, but with a little more support.
Playing in his "tent" bed.  (Meant to keep monkeys from
falling out of bed.)

Okay, that helped a little bit.  He was doing well, but still not quite as good as we hoped.  So we started talking about increasing support a little bit more.  Again, it took a while to get orders.  Wednesday morning, we had them and got started.  Now, the thing is, for most people, that would probably work pretty well.  Aaron has an artery that presses down on his right bronchus, the main stem that goes into his right lung.  Because of that compression, the collapse, it's harder to get good air exchange.  The thought was if we increased the PEEP, the pressure that is always in the lungs, it would hold it open better.  And that's probably true.  BUT increasing the pressure also puts more pressure on the heart because it makes the lungs a little bigger, and makes the blood flow a little more challenging.  So which way was it going to go?
A CT scanner that looks like a pirate ship!

Yeah, well, my kid.....      It wasn't good.  Now, it wasn't bad as in lots of people in his room, significant damage, scary times.  It was bad as in we were on high vent support AND high oxygen, like 15 liters just to keep things at 85%.
All these people hooking me up are kinda silly.

And since it wasn't scary bad, once again, we had to get all the powers that be to weigh in on things before they were changed.  Both cardiology and pulmonology can be difficult departments to reach.  Now try getting both of them at the same time.  Plus, we were in the PICU and while the numbers weren't high, there were a few very, very critical needy patients, kids who were much worse off than we were.

It took all day.  By "all day" I mean we didn't get things changed back until well after dark.  With the failure, both cardio and pulmo decided they wanted a closer look at his lungs, which translated into a chest CT with angio on Thursday morning.

Into the CT tube.
Thursday morning morphed into Thursday afternoon (see the note about hospital time above), and then he had some weird heart tracings after.  There were lots of good, innocent reasons for that, but a couple of very rare and very, very bad reasons, so even with a (sorta) reassuring CT, we needed to stick around for an EKG.  When that was all good, we finally busted out about 4:15, just in time to make it down to an appointment with the ENT before he closed.

Why can't I play with all these fun cords?
Here's the thing, here's the "work," the processing I'm still trying to assimilate in my brain.  Yes, we've got better vent settings.  Yes, the CT didn't have anything terribly awful and new in it.  (The EKG was actually great.)  But that's it.  The vent settings are better, but they're still pretty high.  The airway into his right lung is being squished (for lack of a better word) which makes it harder to breathe, harder to oxygenate.  It pushes his lung disease that much further, which in turn, hurts his heart.  The words in the report are jarring:  "scattered groundglass opacities in all five lobes" "dynamic narrowing of the right upper lobe which decreases by 50% during the respiratory cycle," "concentric thickening of the right ventricular myocardium."  There, in black and white medical terms, my baby's struggling.

At the ENT, after discharge.
We knew this.  Frankly, except the extent of the compression, we knew all of it.  It's just that somehow lungs that are "cloudy with a chance of junk" sounds less lethal than "groundglass opacities (and yes, the reports make it one word, not two) and saying he's got a big heart doesn't give quite the same impression as "the right side of his heart has been working hard for a long time and is getting thicker."

So that's where I am.  Reality has reared it's ugly head again and made me take notice.  We medical mamas are strange, fierce creatures, but we often like to hide from the future.  We feel like if we can just know enough, work hard enough, fight long enough, love hard enough, endure forever, that what we fear will stay away.  The bottom line is, it won't.  There will come a day, and it doesn't matter how far away that day is, it's too close, when we have to step back, stop, and say goodby.  And there are simply no words for that kind of pain.
Happy to be home.

However, that day, for us, is not here yet.  I've been reminded in a very real, tangible way, that it is coming, but It. Is. Not. Here. Yet.  And I refuse to give into the fear, the pain, until it is.  This morning Aaron got his new hearing aid.  Next week, we hope to pick up his glasses.  We're training a new nurse to be one of his school nurses.  I'm filling out paperwork for a communication device that will be much less unwieldy than his current book. He's going to a parade tomorrow and another one in two more weeks.  We're going to laugh and play and sing and make memories.

Aaron is happy.  He is goofy and silly and sometimes mischievous.  That kid knows what's going on around him, and I refuse to subject him to mourning things that can't be changed, but don't need to be focused on right now.  We will move forward.  We must.

“All the art of living lies in a fine mingling of letting go and holding on.” 
– Havelock Ellis