Thursday, February 16, 2017

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  As I heard her discussing her fears and anxieties with the nurse, she sounded just like Shelbie.   I was glad when she broke the silence in the room by asking what was wrong with Shelbie.  I gave her a brief run down of symptoms.  She said she has exactly the same problems.  She has been hunting answers since 2014 but recently, her symptoms began getting worse.   She also told me her daughter has Epilepsy and she had a half dozen 72 Hour EEG's before they caught any seizure activity.

So...welcome to the science and practice of medicine.

Oh well.  Today was infusion day.  We were a little late getting started.  We had to cancel the nurse because of timing.   I thought I would post pictures since I talk about it all the time.  It's expensive stuff.  I didn't realize that about every three years, they suffer disruptions in production.  It's getting better in this country, but some countries have chosen not to pay donors for plasma so they run out of supply and start purchasing from countries that do pay their donors.  Hence the disruption in supply. IgG is protected by the government as a life saving medication.     It doesn't seem right that this little syringe takes 7 hours to infuse through 2 needles that go into her stomach.

The pump, in the lower right corner is nothing very technical.  It's spring loaded and the rate at which it infuses is determined by the size of the tubing and number of needles, rather than by the pump.  She infuses with two needles but some patients infuse with 4 needles.   Each patient is different and each pump is different too.  This costs us over $10,000 a month. 

Plasma is extremely thick and very sticky and if you drip on a wood surface, it cleans the finish clear off.  

So, there you go!  A little more than you wanted to know about plasma and what we do once a week for forever!

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