One of "Those Days"

The super cool shirt one of his brothers
got him for Christmas.  I think it says it all.

It's been one of "those days."  Ups and downs and all arounds.

Got woke up at 3 this morning by my nurse.  He was desatting into the 70's.  Yeah, the fun begins.

He's been struggling more the past couple of days, but I was also remembering that for some reason, January and February see him struggle more with his asthma.  We've been doing extra albuterol (all-better-all) treatments, and seeing some success.  Got him back to where he belonged, and went back to bed.  The rest of the night went pretty well, but he was still needing ten liters of the good stuff.

So we stayed home from church.  During church time, he did amazing!  Actually got down to six liters for a while.  After church?  Well, not so much.  It found us bagging him, again, because 15 liters wasn't doing it.

I wavered.  Do I throw in the towel and call for back-up?  We changed out his trach, nothing.  Did several breathing treatments and bought a little bit of space.  But I did pack my suitcase.

But here's the thing, he looks soooo good!  I mean, through this all, he's laughing at us and pulling at his tubes and things.  His sats are down in the low 80's, high and sometimes lower 70's, but he's giggling!   I mean, how do you call 911 for that?  And yeah, it wasn't just the monitor.  Capillary refill on his forehead corresponded with his machine.  It was real.

This is him getting his treatment.  How do you call 911
when you're dealing with a kid this goofy and happy?

I did discover a lot of blood inside his left ear, probably another ear infection, and cleaned that out really good.  He's doing better since then, but really?  An ear infection?  I can only hope it's that simple.

Sleep (and breathe!) peacefully little man.
Sweet dreams.

But when he's struggling, my mind goes places I don't want it to.  I told William it would almost be easier if he was sick.  Then I'd know it was something we needed to work with and support and get through.  Mentally and emotionally, it's much harder when I can't see a reason for him to be struggling.  I remember that whole "progressive and nonreversible lung disease" thing, and try to ignore that he's on a lot more support than he used to be. I try to distance myself from reality, asking questions like, "if I ignore his sat monitor, will it stop beeping like a child throwing a tantrum?"  No, I know it won't, but then that never worked with my toddlers either.

So here's hoping it was that ear.  It wouldn't be the first time an ear infection masqueraded as a heart or lung issue.  (There are a couple posts about that in 2013 here and here.)  We have no nurse tonight or tomorrow night, so I'll be watching him extra close.  He does have a nurse coming in for school tomorrow, although the jury is still out on whether or not he'll go.  If he continues looking well now that I've cleaned out his ear, I think he'll be on the bus.  If he struggles more tonight, well, nope.  But he loves school, and it does him good, (really, it helps him physically) to go to school.  So if we can make it happen, we will.  Besides, I'm supposed to be subbing tomorrow myself, and it's not a good thing for the sub to call off.  And we also have an appointment with cardiology on Tuesday.  Trust me, ain't no way we'll miss that one.

But right now, he's sleeping, peacefully in his own bed.  And even though I won't sleep in my bed, I'll be in my home.  I am grateful.

Visit [him], gentle Sleep! with wings of healing, And may this storm be but a mountain-birth, May all the stars hang bright above [his] dwelling, Silent as though they watched the sleeping Earth!

Samuel Taylor Coleridge