Thursday, April 11, 2013

sometimes good news isn’t



We survived another MRI.



It doesn’t get easier.  For me, I mean.  Trevy was a trooper getting his IV in.  He was a trooper about not eating.  He was a trooper about having an hour delay.



He was a trooper right up until they wheeled us into the MRI room.  Once he was on “the table” his survival instinct must have clicked…because suddenly trooper was out the window.  He was clawing me and screaming “NOOOOOO!” and “ALL DONE!”  I bear hugged him hard.  He managed to rip my glasses off my face and tear my heart in two before the Proprofol did its thing.



I wish I were a better writer so I could do justice the emotional electricity in those moments.  I wonder if the staff feels it too.  Because to me it’s so tangible I swear you can taste it.  And if nothing else, feel it.  The heartache.  The hope.  The love.  The faith.  The stress.  The strength.  The weakness.  The brokenness.  The desire to pick him up and run to farthest mountain and live like hermits and forget that there are even things like epilepsy and children’s hosptials and tangible moments.  These emotions all run together in those moments.  And it hangs in the air.  Thick.  And powerful.  I feel it intensely.



And then it ends.



Then he was snoring. And I was crying.



Jonathan and the big kids (who were also troopers) met me with coffee and goodies.  Munchies always help pass the time.



A little over an hour later…they took me back to him.  I’d packed scissors and cotton swabs and nail clippers.  Fully intending to take advantage of Sleeping Trevy in recovery.  Ha!  He gave me a late April Fool’s and was wide awake when I got there! 



Nurse Neuro-Surge already called me with their results.  I say their because I’m sending the scan to Dr. Rockstar as well.  Who said, and I quote, “I’d be happy to look at the scan for you”.  Hence my nickname for him.  Because the only doctors who are happy to pro bono look at scans are the ones that moonlight as rockstars!






She claims his MRI is perfect.  And I swear I heard it in her voice.  The don’t let the door hit you on the hiney as you go.



As much as I wanted to have peace locally, what she doesn’t know is that I’ve listened to their results before.  I’ve learned that they are not always right.  Once upon a time, they told me he would never be a surgical candidate.  And they were wrong.



So now I wait for Dr. Rockstar’s thoughts.



Somehow I have this feeling that I’m going to have to muster the energy for a journey West.





Brenda Rhodes said...

Oh, Momma, I am so sorry. I can only imagine how hard this is for Trevy and you! I think there should be a law passed (let it be part of Obamacare) that anytime a child has a test, the results should be sent to the Dr immediately, by helicopter if necessary! We have already traumatized out child and ourself in the process, and then we wait "to talk to the doctor"! Thank the Lord you have Dr. Rockstar, but even with that, could there be any better way to punish a parent other than making them wait for test results? And how dare them not keep him out long enough for you to cut his fingernails! Haha-that cracked me up! I love your posts! Praying for wonderful test results for sweet Trevy. He is the real Rockstar!! Him and his Mom, too.

kristi said...


blogzilly said...

MRI have become so common in our lives I often forget how powerful the experiences are. Especially for a kid experiencing it while conscious, which is something we learned early Bennett can never ever ever do.

That had to be TOUGH. But so far the results seem pretty good.

happy's mommy said...

Trevy still has to be sedated for his MRIs too. I hope that maybe someday he might be able to do it...but for now, thank goodness for sleep meds.

The trouble with the results - Chugani said if Trevor is having intermittent blockages - the MRI scan could be a false-negative. He said it's well known to occur but difficult to prove because you have to have the scan done as soon as he's symptomatic. It's impossible to get a sedated MRI done like that. Sigh.


blogzilly said...

Well, that's not fair, is it?

happy's mommy said...

I swear it's causing me to have little panic attacks. Nothing is fair or easy with neurology. But at least I feel like Dr. C shoots straight and doesn't blow me off.


Brenda Rhodes said...

I have been missing you! Just wanted to check and make sure everything is okay. I have been super stressed taking care of my Mom and trying to get her settled in the nursing home, just in time for her to be taken to the ER by ambulance for breathing problems. After 2 days in ICU they have decided to move her to the University of Arkansas Med Center in Little Rock to try to get to the bottom of this. And why does it seem like those in the family that aren't helping take care of her are the ones that are gripping that we need to get her here and do this and etc, etc.?? Anyway, I tell you all this to say I dont know how you do it! With all the extra appointments, fighting insurance companies, just being a wife and Mom, and you find time to home school...and you still have your sense of humor! I think you are amazing! Hoping everything is ok in your household and you are just having too much fun to post! Miss you!! And if you happen to find a free minute, would you mind saying a little prayer for my Mom, Lucy? Thank you!!