A Rough Week

Well, it's been a week... 

We came home last Saturday and we got 72 hours.  Three whole freaking days... 

And it started again.  

I mean, those three days were amazing!  He was laughing and playing and smiling.  Getting into mischief.  We were putting him back in pants and shirts tucked in to keep diapers on and g-tubes in his belly.  (Except the g-tube had been lengthened and was often leaking, but that's a completely different issue.)

And then I fed him his afternoon meal on Tuesday, and it all broke loose.  Cue the tears and silent screams.  Spike the fever.  Complete agony.  There's nothing more heartbreaking as a mom to have your child in pain and not be able to do anything about it.  

I mean, I guess we tried.  I stopped his feeding again and started Pedialyte, but a kid can't just live on Pedialyte.  We did that through Wednesday and then started him again on half food, half Pedialyte.  I sent a message to his care team.  When his doctor called back, she recommended that we take things very slowly, a few days of half and half, and only the very basic ingredients, and then slowly expand.  

Friday night I tried to go to the high school Homecoming game.  I made it to halftime, and they won, so there's that.  But at halftime, William called and we were back to unconsolable crying and a huge code brown (kinda like a massive diaper malfunction, TMI?).  So I went home to fevers, a very sad child, and we worked to get him (and everything else) cleaned up.  More rescue meds.  Reevaluating his GI meds (again) and almost cried myself.

Yesterday was okay, and so is today.  But I hold my breath, wondering if it will continue.

Earlier on Friday I opened up Facebook to look for someone's contact information and discovered that one of our friends had died.  Little Sam also had Trisomy 18.  Another little boy, actually not too far away from us.  They live north of Salt Lake and Primary's was their medical home as well.  Such a bright, happy child, the light of his family.  I just ache.  

I still don't know why we've been spared (so far) and so many others have not.  Sam now, Joseph two years ago: both have pieces of my heart and I haven't quite figured out how to process this.  And so many, many others.  It's hard, so hard.  

So I'm sitting here in my quiet home on a Sunday afternoon writing.  I remember their moms.  Becka and I shared so many times up at Primary's.  Melissa and I didn't quite as much, but there were still several meetings.  When we went up a few Saturday's ago, Melissa waited outside the ER to greet me and make sure I was okay.  Now she's not okay, and I don't have any way to make it better.  There's a huge Sam-sized hole in their family.  It's a physical ache, a loss.  And in one form or another, will be there for the rest of their lives.  

I'm taking a crisis intervention class this semester and one thing keeps coming back to me.  A crisis overwhelms the world we think we know and shatters our conception of how things "should be."  I've said for more than 12 years, parents aren't supposed to bury their children.  It's still true, but it happens.  Way too much.  

“Grief is love with no place to go”
― Karen Gibbs,

No Answers, But He's Not Crying

Quick update ('cause you know I'm supposed to be studying).  The title kinda says it all in a nutshell.  

We discovered an ear infection and ear drainage so that's being treated.  They stopped his food yesterday morning (and he missed two meals the end of Tuesday) and just ran Pedialyte continuous to give his gut a rest.  He continued to fever and cry whenever he was awake through early afternoon yesterday.  I got to thinking and realized, no adult I know would be willing to put up with this kind of pain.  Yet somehow, we expect kids and older people to just deal.  Nope.

So I asked what we could do.  

Ativan, you know, the stuff I gave him at home that made him sleep but he'd still struggle when he woke up.  

I figured that even if it didn't "fix" things, at least he could rest and not cry for a while.  

But maybe it did.  He really hasn't cried since then.  He did pop another fever during the night but has been fever free since then.  He's actually played today.  Not much.  He's been asleep most of the time and he's looking tired again.  But his color is good, and his sleep actually seems restful.  So we'll go with that.

They did an abdominal ultrasound today and there wasn't much that showed up there, at least that would explain what's going on.  It did show that his kidneys are markedly smaller than they were in February, which is not a great thing.  But we'll explore that one another time.  Except the med we're giving now to coat his stomach is also not something the kidneys like so much, so...

We've started feeding him again and we'll see where that goes.  Doc is talking to GI, but unless we can show an intolerance to his feeds that's probably as far as that will go.  If he does struggle, we may be able to convince them to scope him out.  Who knows.

So if things continue the way they are, we might go home in the next couple days.  Or we might not.  We have to just take it a day, a moment at a time.

"Faith means living with uncertainty - feeling your way through life, 

letting your heart guide you like a lantern in the dark."  

Dan Millman

Here We Go (Again)

We're baaack.  Except since I never wrote about the last one, most people don't know about it.  

Almost two weeks ago we went to the ER because of fevers that weren't responding to Tylenol, Motrin, or his neuro-storming med, Clonidine.  Labs and x-rays all looked good; his lungs looked amazing!  So we chalked it up to an unknown virus and went home.  Funny note: he had increased his oxygen needs to about 4-5 liters and the doc asked what was the most we'd ever run at home. When I said "15," his eyes got wide and he shrugged and said, "Well, okay then..."  Yeah, I love this new vent.

So this week...

Sunday he was "off," kinda lethargic, not very interactive.  I guess even Saturday he wasn't quite himself.  I wanted to get him up and out of bed, and thought he'd really enjoy watching football, but every time I went in, he was asleep.  

Sunday night the fun really got going.  That night, he started crying uncontrollably, sometimes screaming in pain.  Want to break your heart?  Watch a kiddo who can't vocalize scream (mostly) silently.  It was awful.    He ran fevers which only responded minimally to the Tylenol, Motrin and Clonidine.  We tried everything, including Ativan for sedation. That worked in that he slept, but when it wore off, he started again.  Tried one more time with the Ativan late Monday night.  Again, he slept, but was not happy.

His awesome school nurse came and hung out with him on Tuesday but while it wasn't quite as rough, he still had an awful time. By mid-afternoon, I was putting a call into his ped who agreed that this pain was just not good, and he recommended the ER.  

Let me tell ya, it was hoppin' up here.  They did get us back relatively quickly, but then with all the tests he needed it took a loooong time.  Results were reassuring, and not.  Reassuring in that everything once again, came back pretty good.  There was a question about some of his hips, so there were more in-depth studies ordered, but those came back negative as well.  So they admitted him in order to keep looking. 

This poor baby.  When you move him, he sobs even more.  Something is definitely hurting him.  And it breaks my mama heart that we can't find a way to make it stop.  But I'm grateful for a team that is trying to find some answers.

Please pray that we can find the answers and help him.  We miss our happy bug.  He needs to be comfortable and stable.  2022 has been really rough.  

I found this rock outside our classroom building last Friday.  It kinda says it all...

"You don't drown by falling in the water; you drown by staying there."

Edwin Louis Cole