Our Week and Defining Hope

In the ED Sunday night

Sooooo, this kid...

Last weekend I went to Arizona to see family.  We planned it out, got daytime coverage for Aaron, and Daddy and Michael were handling the two nights I was going to be gone.  We had trip insurance because, well, you know.  He looked good.  Everything looked good.  I stayed in touch.  Everything was good!  

Was...

Yeah...

I'm grateful he waited and behaved while I was gone.  He quit as soon as I was home.

As I walked through the door, Holli said, "well, he knew you were coming home."  About three minutes before I got there, he started acting up.  

And then more.

And then more.

He dropped his sats and the only way we could get him back was by bagging on 15 liters of oxygen. We tried everything. More albuterol.  He'd just had his inhaled heart med. Changed the trach out. 

At one point he even brady-ed down (dropped his heart rate into the low 40's).  Haven't seen one of those episodes since he stopped having central apnea at two months old.  At that point, I grabbed the phone and called 911.  Fortunately, he recovered quickly because I was ready to tell dispatch that the paramedics needed to consider the chopper.  

I wasn't happy.

They got there and it was definitely a "throw and go" rather than a "stay and play" (where we simply bundle and head out rather than working on him at all).  

We went lights and sirens all the way up.  While he's had several ambulance rides, we've only done that a few times, like maybe 3?

So that was Sunday night.

We got here and he looked "okay." White blood count was a bit higher and his x-ray was read as possible pneumonia but he was completely asymptomatic for that and his docs and I were all a but underwhelmed by the film.  Still, he was needing 10-15 liters of oxygen, although on his home vent settings.  So we went to the floor (about 5 am, long night!).  

Since then, he's kinda just hung out.  He's needed less and less oxygen with yesterday spending most of his time at 8 but a significant portion actually at 6 liters, with occasional bumps up to 10-15.  Repeated labs and his white blood count was down. Things were looking pretty good and I became cautiously optimistic that we could head home this weekend.

Yeah....

Um, maybe not.

Yesterday he started in with fevers, and more oxygen needs again.  Repeated chest x-ray (still the same, kinda looks like him). Pulled labs again; white blood count is even higher than initially.  Did a urine culture, totally, completely normal with nothing at all.  And more fever with accompanied higher heart rate. He even triggered a sepsis alert.  

No, he's not septic and we knew that. It's just if there's a combination of various symptoms the computer alerts staff to look further and consider it.  And he was there.  

Plus, he's sleeping more and less interactive.

So, what do we know? (or think we know). Don't think it's neurostorming. His fever yesterday and last night responded to Tylenol and Motrin. Those don't do anything if he's storming.  It's not a UTI.  Probably not pneumonia, but we might need to take him down to radiology to get a two-view look to make sure nothing is hiding.  But again, he doesn't have any secretions and he sounds pretty good in his lungs.  Viral panels have been run twice and came back clean both times although could be something that's not tested for (it's about 27 different viruses).  He's still having ear drainage from surgery, but the doctor is going to talk to ENT and have them look. Trach aspirate only grew out a tiny amount of bacteria, and they're ones we know he's already colonized with.  Blood cultures from admit haven't grown anything but we've pulled more.  Heart actually looks pretty good! His BNP isn't in the normal range but has continued to drop from our stay in November/December which had dropped from earlier in the year.  

So we're kinda shooting in the dark.

But going home this weekend? 

It's looking less and less likely.  

I encountered a definition of hope this week in one of my classes that really resonated with me.  

"Belief in the plausibility of the possible as opposed to the necessity of the probable."

Read that again.

The plausibility of the POSSIBLE, as opposed to the necessity of the probable.

Isn't that why we do it? Isn't that why we try? The possible IS possible, and so we keep moving forward. That's why the toddler keeps trying to stand and walk.  That's why the student keeps trying to figure out the concept. That's why parents keep fighting.

We fight because of the plausibility of the possible. We have a dream, a goal.  We have a child that relies on us to be their voice.

And so we keep going, working, not giving up.  

We can't.

We won't. 

And it's totally worth it.

"Hope is the belief in the plausibility of the possible, 

as opposed to the necessity of the probable."

Maimonidies

Update: today did not go as planned. He struggled more, became maxed out on his respiratory support on the floor, was feverish and basically looked bad. So we transferred down to PICU. Not a reflection on the care he got on the floor. He just needs a higher level of care at this point. Again, we'll get there.