Tuesday, September 28, 2021

Warning: Rambling Therapy-type Post

Okay, it's time for a "therapy" type post again.  You've been warned.

One of my (self-assigned) assignments for a class was to pick a word to focus on, reflect on, and use to re-center myself.  I'm supposed to use it to help frame both professional and personal regulation.  When I asked the family hive mind, the one all the kids who responded chose was "resilience".  Various others had some other ideas, but that's the one that spoke to me, perhaps because my kids, without consulting each other, said so. 

So resilience it is.  And I like it.  One described it as ocean waves that keep coming in, and sometimes they send you for a tumble, but you get back up.  When I asked what resilience looked like, another said pansies (you know, the flower I associate with Aaron, the one on the blog).  

But maybe it's a bit like praying for patience.  I learned LOOOONG ago to never do that.  See, God doesn't give you patience.  He gives you opportunities to practice and develop patience.  

And I'm left wondering if resilience is something similar.  

Can you tell I'm having a bit of a rough time?  (And I'm avoiding homework??) 

So here we go, and like I said, you've been warned.  

Aaron is still struggling, although he might have finally gotten rid of the ear infection that sent us to the hospital in the middle of the night in an ambulance on August 11.  But it took three different courses of oral (okay, g-tube) antibiotics and a fourth round of three antibiotic injections, each 24 hours apart.  

And yesterday he decided once again that breathing was totally optional.  As in even with the bag, his nurse was struggling to get him out of the 60's.  Someone tell this kid if he's going to be a rebellious tween, he needs to pick something else?  So I raced out of a (mandatory) meeting and picked them up at school.  (It didn't help that last week as I passed the school, there was an ambulance and fire truck there with lights on and doors open.). Anyway, we got home and did a trach change that went pretty normally.  There was some "junk" in the trach, but not completely blocked.  So who knows? 

And then the fun began.  Big blood clot.  I'll spare you the picture I took but about the size of two peas stuck together.  And then more bleeding, frank, fresh bleeding.  And later, another.  And another.  All told, by the time I got up this morning, he'd had about eight clots that he'd coughed up with fresh bleeding behind each one.  After the first two last night, I decided he wasn't going to school today.  The trouble with bleeding is a two-edged sword.  Suctioning, especially going just beyond the trach, can make it worse, but not suctioning can lead to clotting inside the tube, cutting off all breathing.  See the problem?

This morning when it continued, we had to head in.  So we spent the entire day in the emergency room.  They ran a ton of labs, took an x-ray, and called the ENT who brought in a fun camera to look down his trachea.  Long and short, they found lots more blood and clots, mostly up by the end of the trach tube.  The thought is that it is curving enough that it's rubbing on the front of the trachea and causing the problem.  Unfortunately, the solution is probably a longer trach, which doesn't just hang out on hospital shelves.  It's a specialty trach, and I really didn't like the other options we had there.  We did come up with a workable plan until a new one can be acquired, but then given the amount of blood (and the fact that just as they came in, he did block his trach leading to us doing an emergency change), they wanted to keep him for observation.  

Nope, not happening.  I was very much against it unless there was something they could do there that we can't do at home, and there's not.  In fact, we can watch him better at home than they can there just due to staffing and protocols.  So home we came.  And here we are.  But the other part is that he's got some liver and heart labs that are wonky, more than usual.  And I don't like it.  At. All.

My friend died last night.  I don't even know how to process this.  It's been coming, but still, to have it here...  I ache for her husband and kids, and the whole neighborhood. She was, IS, an amazing person.  Like I said, I don't know how to do this.

And then there's school.  17 credits is a LOT.  And today was supposed to be spent in study, working on my papers, my mid-term, my term paper, and the group classes I really need to get teaching.  Um, nope.  Didn't happen.  Don't get me wrong.  I am LOVING what I'm doing.  This is what I'm supposed to do, who I'm meant to be (just wish I'd figured it out 30 years ago).  But it's hard.  And while I'm working on how to help others, how to help them process the difficult things in their lives, I'm realizing that today, right now, I'm not processing.  I'm shoving it down, trying to ignore it, and trying to write a paper on racism.  

So there I am.  My friend is gone.  My son is struggling.  I spent the whole day at the hospital which is just EXHAUSTING, and now I'm need to set that aside until "later" to process.  Except that I decided I couldn't do that.  So here I am, writing, processing, untangling the knotted up threads in my mind.  And you, if you've gotten this far, have a front-row seat to my insanity.  

And maybe now I'll be able to focus a little more, and maybe even get some sleep tonight before it starts all over again tomorrow.  I love you, Traci.  I hope I can someday be like you and like Aaron.  

“If there ever comes a day when we can’t be together, keep me in your heart, 
I’ll stay there forever.” 
—Winnie the Pooh

Sunday, September 5, 2021

And Then There Were Two...

Yesterday, Joseph moved out to go back to school.  We're down to two.  TWO.  Not quite sure how this happened but it did.  It's Michael and Aaron.  Just two at home.  (Plus two dogs, which is almost like two toddlers, but whatever.)

And Michael is a sophomore and playing football, and Aaron is in 6th grade.  I just started my social work master's program.  Michael and Aaron both seem to be enjoying school, I'm loving it!  Totally overwhelmed and feeling like I know nothing, but it's fascinating.  I've been assigned to two grade schools for my practicum and love getting to know the kids and staff.  

In the month (plus) since I wrote, Aaron has kinda struggled.

Anyone remember what an ear infection feels like?  That hot needle poking into the eardrum?  The electric shock you get every time you swallow, or the throbbing pain when you like down?  Yeah, the ears...

Anyway, the beginning of August, we started seeing some drainage from one ear and he wasn't as happy.  A couple other things came up and on the 9th, I made plans to take him in the next day, probably to Primary's but not quite certain.  Aaron decided he was done playing around.  He'd been having a rougher time all evening, needing to be bagged pretty often but able to maintain with that kind of support.  I figured I got off work at 1:30, would try to get a few hours of sleep, and then take him in.  Um, nope!  At 1:35 he took over.  Even bagging him we struggled to maintain 70's saturation.  (Remember, most of us hang out about 96%.).  So plan B (or G or Q?? who knows how many versions by then.) I grabbed the hospital bag, William and the nurse worked on Aaron, and we called 911. 

Guys, it's been long enough since we called them that I didn't know them, and they didn't know me!  That's actually kinda a good thing.  I did have to tell them I was riding in the back, within arm's reach of Aaron.  He's complicated enough that they just said, "okay."  Good thing.

Anyway, due to some pain issues we did x-rays of lungs, hips, legs, etc, ran all sorts of labs.  Everything came back good, except his ears.  Bilateral nasty ear infections.  Bring on the pink stuff.  (I remember taking that, it tasted good!  Too bad his goes through the g-tube.) He starts to get better and we discharge on the 13th

Fast forward ten days.  You know what is significant about ten days?  That's the time it takes to go through the antibiotics.  He's struggling again.  This time I didn't wait for him to take charge and took him to the pediatrician.  New antibiotic, not quite as yummy, but stronger.  He does better again, and is actually happy and laughing for the first time in quite a while.  For about ten days.  Yeah, that again.

In the meantime, school starts and the usually back to school crud starts popping up.  He's doing well, but some in his class are getting sick.  And then we had some difficult things happen mid-week as well.  He struggles more, we start suctioning blood tinged secretions.  And he needs more oxygen.  And some more.  And his nose gets a little snotty...

Which brings us here.  To the ER.  Again.  The good news is that his left ear is definitely infected.  Yes again, and yes that's good news.  His chest x-ray looked like him in my opinion.  So now we're waiting on labs, but hopefully we'll be headed home sometime later.  Still waiting on the labs.  

But man, this poor kid!  And he can't have tubes because there is no room in the middle ear for them.  The structures in there are either malformed or under developed so not an option.  

Through it all, he just maintains. He tries to smile, he watches his movies.  He doesn't sleep well, but again, it hurts to lie down.  He's my hero.  They were trying to get an IV in and he just endured it.  He shook, he grimaced, but as soon as they were done, he was fine.  He didn't fight or cry.  He just did it.  I hope when I grow up, I'm like Aaron.

A true hero isn't measured by the size of his strength, 
but by the size of his heart.
Zeus, from Hercules