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


  1. I'm sorry. I pray for Aaron every day. xoxo

  2. Trust me when I say it NEVER goes away. Not even when the worst happens.

    I am so glad Aaron still has mlre good days.