Friday, April 14, 2023

Living on Borrowed Time

I'm finding I'm not doing so well at keeping this updated, or writing, or whatever lately.  In my defense (I seem to be feeling defensive more) I am finishing my Master in Social Work degree.  That's been pretty intense, and then so has Aaron.  So a lot of my "processing" hasn't been happening on here, and my lack of focus might be showing.  Yeah, there's that.

But anyway, Aaron's had some more "fun" lately.  Last weekend he had tummy trouble again.  I stopped his food and started a pedialyte clean-out. (Yeah, it's as fun as it sounds.) We thought we worked through it, fevers went away and he started pooping again.  Then Monday I got pictures from his nurse.  That tummy was BIG! Like 9-months-pregnant big!  Uh, not so good.  

Our awesome ped's nurse called in x-rays to the local hospital and away we went.  They were pretty ugly.  Lots and lots of large air pockets in his intestines (which is much better than outside the intestines).  Anyway, that earned him a trip north to the Hotel on the Hill.  

The good news is that it was not a blockage.  It probably was another ileus, but this time it only took a short time to resolve, unlike our three week stay in December.  He didn't even end up with an IV!  I was worried that surgery would be needed, and concerned that it seemed to be going that way.  When I expressed my hesitation, I was grateful to hear the surgeon say that she was really reticent to do surgery on him, that they wanted to exhaust any and all other options first.  Thank goodness.  I keep saying it, but he and anesthesia are not buddies.  

So we were inpatient through Thursday mid-day. It really was a smooth stay as far as those go. We ran pedialyte at a slow rate at first, switched over to half food half pedialyte for several feeds, and then did full feeds for 24 hours and ran away!



About two hour after we got home, he started running high fevers.  We're not seeing anything else, and his O2 needs are still really good, so for now we're just hanging out.  But man, this kid (and I) could use a break!

Last Sunday was Easter.  For part of our focus during Holy Week, we wrote scriptures or brief comments about the Savior and put them inside plastic Easter eggs.  After dinner, we opened them and read them out loud.  Two really stood out to me.  Three-year-old Linnaea said, "Jesus makes me all better."  Yes, yes He does.  And then, "The tomb is empty."  This one choked me up.  It is empty.  And because it is empty, someday our graves will be as well.  Death is not the end.  It has been conquered.

Our first year, I was on tenterhooks the whole time, waiting for Aaron to die.  We'd been told it would happen, and it almost did a few times.  Since then, in many ways, I've moved passed that.  But February 2022 brought it back in stark reflection.  For the past 14 months, I've almost felt like we were living on borrowed time.  I mean, we are, all of us.  But it's not something that most people think about.  We just live, we expect to live.  However, now, every time he gets wonky, every time he's admitted, I worry.  I find myself hypervigilent.  

I guess that's part of living with a medically fragile loved one.  Cramming as much of life and love into a short time as we can.  But also knowing that the Tomb is empty.  Death has lost (a little bit) of its sting.  Christ is risen, risen indeed.

We're all living on borrowed time. The trick is to come up with works 
of sufficient interest to pay off the debt.
John M. Ford