Wednesday, September 7, 2022

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

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