Monday, April 25, 2011

And then there's that... with more RAGEFACE.

For the past couple days, Jaysen's been complaining of a stomach ache.  Dr. appt stated a urinary tract infection. 
Y'know that "mom-voice" that says really, I'm sure that's a lovely diagnosis, but I just don't think that's what's going on here... The one that gets you labeled as "combative" and "non-compliant"?  Yeah, well we get it for a reason, doktorz.
However, I accepted the dx under the promise they would get back with me once the culture came back from the lab. 

Saturday, we spent the night in the hospital.

When I went to pick the kids up from Companion's house (note to self: Companion possibly needs a new moniker), Jaysen was still complaining his stomach hurt, and his belly button was "dirty".  Upon inspection, the "dirt" was crusty something.  Further inspection revealed that the crusties were pus.  Lovely.

So I called the doctor again, who referred us to the outpatient pediatric clinic.
Dr. at the clinic swabbed his navel, handed the culture to me, and told us to immediately go to ER.
"Emergency Room" and "Immediately" are words that when used together, automatically induce terror in a parent's heart.

So we went to Emergency.  Immediately.

The doctors there were awesome. 
They were efficient, informative, and let me know every little process they were considering.  They involved me from the get go.  They understood what it meant, the issues that Jaysen's ASD may present- they explained a procedure to me, and hung back while I explained it to Jaysen (and subsequently calmed him from the freakout trigger words "needle" and "medicine"). 
They understood about processing time, and respected that.  They asked my opinion on what the best approach would be for them to get what they needed.  They took their time to explain procedures further, in steps, so I could present it to him like that.  They.were.awesome. 

And Jaysen did an awesome job of letting the doctors know where his abdomen hurt and where it didn't.  He followed directions, and responded to the questions asked of him (in his Jaysen-speak).  He toughed it out and allowed them to examine him even when it was uncomfortable, even painful for him.  Fear is a powerful sedative when it comes to Jaysen.

He was terrified of getting an IV, but he didn't try to punch the tech. 
I almost did, however, because he was one of those who have to "dig around" for the vein once inside.  Asshole.

I waited for Jaysen's adrenaline RAGEFACE to subside, and explained to him that this was where they would put any medicine he would have to take, and that was uber-cool because he wouldn't have to swallow any meds.  He was unimpressed, until the nurse was fussing around and I told him she just gave him meds, and he didn't even know it.  Then, it was kinda cool, and he wanted me to take pictures of the IV.

They wanted a CT scan.
Problem with a CT scan (besides the pesky radiation), is you have to drink this apparently nasty contrast liquid. 
And no, putting it in apple juice doesn't make it any better.

Jaysen barfed it up. Twice.
They ended up putting contrast in his IV.
I asked about mild sedation- the doctor said "I figured you could go in there if you wanted to, I don't think he'll need sedation- you have a strong connection and work very well with him.  It's really cool to see.  I think he'll be fine with you there."
Aww!  Thanks doc.  I was meaning for me. 
But he did do fine during the scan.  I did too.

So....what's up with my crazy kid?
The official diagnosis is urachal remnant.  And cellulitis.
The cellulitis is no biggie, but the urachal remnant part sounds tweakish.
Apparently, this is a congenital defect where the tract going from the bladder to the belly button does not close completely after birth.
It's this semi-open tract, that became infected.
We caught it early enough that it wasn't a deep infection, so that was good.
But it can be recurring, and if left untreated, is bad news bears.

Butchaknow what?  I am so super proud of him.
He may not have been the bravest at first, but he followed mad directions, even in spite of his sensory issues and fear.  He was a trooper at drinking his "stinky juice", and is swallowing his big antibiotic horse pills. Those are both little victories for him. 
Actually, they're pretty huge.

And I am probably going to hell, but I love that last picture...


Niksmom said...

Wow, this are all HUGE successes! Sucks that you both had to go through that, though. Can it be surgically corrected?

When will docs learn to actually listen to maternal instincts more?? Seriously. Oy.

Corabelle said...

Great job mom! Great job kiddo! Reading this give me so much hope in my current situtation. I hope everything works out alright for you guys. *hugs* you should be very proud of him.

Dani G said...

Wow. First of all, great pictures!
Sorry he's going through this. Will there ever be a dull freaking moment?
Also, which ER was so great? Maybe I should head there next time?!

M said...

Sounds stressful, but you both did a great job!

r.b. said...

You are wise. That processing thing...Ben is 17 years old and I am just figuring it out.

Glad Jaysen is okay.

Casdok said...

well done Jaysen!
Glad they got to the bottom of it - and am impressed with the hospital.