Monday, July 17, 2017

Untitled Part 2

I guess this post is part 2 of our Neurology appointment from last week...

In addition to the news of the seizure disorder, it was confirmed that Shelbie has a large benign tumor in the left temporal lobe of her brain.  I have never quite understood how a doctor can look at a brain tumor and say, "Well, don't worry about it."

Really?  Because how is that possible? It makes me kind of mad...well, really mad and part of me feels like I should have gotten mad about 25 years ago when it didn't make sense my SIDS baby continued to live...can you really call it SIDS?  And night after night for 2 years of monitoring when she couldn't maintain a normal heart rate or respiration rate...I wasn't suppose to worry about that either? And febrile seizures don't happen at 99 degrees...

I guess after letting this news settle in for a few days, I am now circling around to the anger side of grieving.  This is the ugly part of the process.  This is where there are no earthly answers for the questions I have, apparently.   It's kind of a baron place; lonely. Where you really want to pin someone to the ground and scream at them all the otherness you feel until they feel what you feel. This is not my favorite place to be.  But welcome...glad you could make it to the madness.

Anyways... I'm done with the phrase "Don't worry about."  So, I asked her to explain how a large brain tumor in the left side of the brain is nothing to worry about?

She explained that if you have to have a brain tumor, you want one in the 'Nevada' parts of the brain, not the 'New York' parts of the brain.  Shelbie's tumor is in Nevada; there is stuff going on but not important brain function.  I can't help but think that God surely, didn't just throw in parts of our body that have absolutely no good use or maybe he did.  Maybe he threw in a bunch of extra brain tissue so there was plenty of room for important stuff and brain tumors.  Smart guy!!

 We are still waiting to be scheduled for the PET scan of her body and brain to see if there is new growth in the Nevada Tumor and make sure it hasn't invited 'friends'.   They will also get another look at her dwindling white matter, the hippocampus damage and the AVM, they think they saw which could really cause some stroke problems.

We also discussed more about Shelbie's Flattened Pituitary Gland.  Again,  a few months ago when I heard about this, they said, "Don't worry about it, it isn't causing any problems."

So, again, last week, I said, "Tell me again how an empty or flat pituitary gland isn't causing problems when God designed them to be a completely different shape than flat?"

"Well, she is fine, that's why."
"She's not fine.  She's been on thyroid replacement hormone since she was 5 years old."
"Because she has Hashimoto's Disesase."
"How do we know she actually has that.  No one did any ultrasound, imaging, they just saw that she had zero thyroid hormone at age 5 and made assumptions.  How do we know she has no hormone because of her flattened pituitary gland?  How do we know her hot flashes aren't also caused by this?"
" have a point. I didn't realize they hadn't worked her up for Hashimoto antibodies."

She wrote orders for a ton of blood work but it was such a seriously difficult appointment to get through that by the time we left the exam room, we were both shell shocked and Shelbie refused to walk down to the lab and have a blood draw.  She just needed to get out of there so that testing will have to wait until the PET scan.

Since her leg is still swollen with more enlarged lymph nodes, we are back to the question...does she have lymphoma now?  Again, the PET scan is also being ordered to rule that out.  Seems like this will be our yearly dilemma.

I am fully expecting that blood test, when we get it, to come back normal for Hashimoto's.  I know in my gut that her pituitary gland is faulty and the cause of her thyroid fact, I am willing to bet someone money that I am right.

This week, we have another trip to Salt Lake...Spencer has cardiology.  I sure hope my temper simmers a little because I am so tired of getting the monthly reports from his monitoring telling me that his heart was without a beat for 8 seconds, twice in the past month, his heart rate was 250 bpm another time and in the next 10 seconds dropped to 22 bpm...but let's continue to observe.  I'm so done with the run around!  We have plenty of proof that his body cannot regulate his heart rhythm. It's just time for a pace maker or defibrillator.  They have no clue how difficult it is to live like this. No clue.


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