Good Grrrrrief!

 

Casey's bed tag...
"Endoscopic UltraSound"
Not sure what the final "E" was for...
Maybe to tag her as an 'experiment'?

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A misnomer, this sign...

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Good Morning Everyone!
We are home from Mayo once again.
Sadly, no wiser than we left.

And I have been battling a migraine since our return.
Not fun at all.

****IMPORTANT:
If any of you received text messages from CaseyFace on Friday, please know that she was more than 'under the influence' after her procedure.
(Mad as hell, and very much misunderstanding what the doctor had told her)...

We left on Thursday...
... and during another new attack for her...
Knowing Mayo would do her blood work and let us know what was going on with her amylase and lipase counts.
She has not had any pain pills in a few weeks now, and has put herself through hell with that too.
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She slept for the most part after we finally found a hotel ~as did Punk.
(I say 'finally' ~because the fair was "happening" in Rochester, and there were no rooms anywhere).

Oh wait, yes there were... AND, we even had a choice!

Either we paid an ungodly amount to leave Punk in the car, or at another place, to sleep in one bed.
(A twin bed at that)!
hehehe
That's not going to work...

So on the phone with Casey's wonderful man. Greg googled everything for us, and found us a room at Stewartville. (Just a hop, skip and a jump down the road from Rochester).
I'd much rather be out of town anyway, so this was definitely not a problem.
I called there.
The people (Eastern Indian) were extremely difficult to understand on the phone.
But upon our arrival, were the most decent people I have ever dealt with in any hotel.

After getting settled in, (in our pristine and perfect room), we ordered from one of the town menus.
One pizza place offered Homemade Chicken Pot Pie.
Casey cannot eat pizza since her pancreas has gone haywire; so we both ordered a serving of their pie.
Casey was even bold enough to add some BBQ wings to go along with hers.
To say that these pies rivaled my own would be true. hehehe
OMG, but they were SO good!!!
Casey also had remarked that her wings were also the best she has ever ordered anywhere.
(She'd eaten about 4 bites of her pie before her pancreas violently objected to it, ~ so she was 'stuck' eating those wings)...

Punk simply drooled...
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They both slept until I woke them at 10:30AM. We had to be out of the room by 11; which worked out perfectly to get to Mayo for Casey's appointment at noon.
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The nurses were quite kind...
Mayo had a visiting doctor, (Clain), from USC who specializes in gastrointestinal stuff; a leading doctor on the pancreas.
He was also quite rude, not allowing Casey to say a word. When she did ask a question, he replied that she did not want to be telling him how to do his job.
WHAT?!?
All she did was ask a question of him!!!

So let's just get this over and done with.
First to sign a paper that authorized them to to 'use' her as a study patient.
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They had found her interesting enough to place her within this group.
blah blah blah.
For Pete's sakes, who the heck cares about all of this?
Just please fix her already???
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Whenever one gets poked in the pancreas, it sets off an attack. This has always been her reaction to her EUS procedures, or the ERCP's she has had.
Any probing really p*sses off her pancreas.
Friday was no different.
She returned to the recovery room in pain.
They gave her Demerol, (25 mgs.), which did not even touch her pain.
Then finally gave her a hypo of Dilaudid.
That worked, and we would be able to keep our appointment for her results across the street for 4:30.

We used the skywalk...
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At this appointment, her doctor, (Kisiel), tried to explain to her the possible scenario of nerve damage from Froedtert's surgeries; and the possible inability they would have to control her pain. At some point, the dilaudid really kicked in... and she got everything a little mixed up.
Reflect back to my note about her text msgs... At no point did he say she was an addict. Good grief, she has gone many months at times with no relief at all.
This is a very touchy subject for us both, especially given what July had thrown our way.

Back to Dr. Kisiel.
Her EUS was unremarkable. No calcium deposits etc. (I know too, that the good Dr Clain had made up his mind about her pancreas even before he went in and looked around).
One gets to 'peg' these certain personalities after these many years of watching, ~listening to the nurses and doctors; seeing/reading their body language (that may/may not betray their words).

And so, like I said before, we know nothing more than what we did before we left home.

She is still in pain, with no good explanations, or help, or relief offered to her.
I for one, would LOVE to be a fly on the wall if her doctor here would ever be in the same room with this Dr. Clain. After all his work with her here, and to have his lab results simply dismissed by Mayo.
They also threw out her bloodwork from the hospitals here because it wasn't on their scale.

We drove home that night.
I didn't mean to, as I had been up since 4 AM.
But again, there were no rooms within a couple hundred mile radius of Oshkosh, Wisconsin, because of the EAA Convention. (CLICK for info).

I was dog tired, and my head was just starting to act up. I dropped Casey off at her place. Punk and I came home to a hot stuffy house.

We will know more once she speaks with her doctor here, and has him all filled in. I promise to keep you all informed.

For now, it will be back to my quiet dark bedroom... Maybe a nap?

I hope you are all having a grand weekend!

XOXO
Anne

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Originally posted to my Y!360, Sunday August 3, 2008 - 09:22am (CDT)