Skip to main content

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!



Post a Comment

Popular posts from this blog

Post Trauma

This week is definitely one for the books and one I hope to never repeat.  You would think that after 12 years of being divorced, there would be little left to argue about and spend energy being contentious but it seems that is not the case.  We have a history of ups and downs and currently, we are in a downward turn and honestly, I don't see that we will ever enjoy the 'ups' again.  So, it's been sad and the most emotional taxing week!

The kids were suppose to be in Utah for a huge Independence Day Celebration with their dad and new step family.  It was to consist of Seven Peaks, Fireworks, and a Hunter Hayes concert.  All that changed so they were home and not too happy about the circumstances.

I had three broken and depressed kids on my hands so I knew I had to come up with something to soften the edges of this week.

Up in the Teton Valley is a hot air balloon festival every July 1st.  You don't see hot air balloons very often in our part of the world.  Back …


I have had a lot of time to think about what to title this post.  I'm still undecided.  Here are some options...

This is just a test.
Full Circle
The wonders of God
Missing pieces
Borrowed Time

Shelbie had her neurology appointment yesterday.  About a month ago, a nurse called to tell me our neurologist wanted to see Shelbie.  That has rarely happened, that a doctor calls me to see my kids, so there was no hesitation in my response.

We waited over an hour and a half for the doctor to get to our room.  We kept occupied with Snapchat filters, GIFs and stupid Memes.  Everything seemed funny but I had the worst gnawing feeling that all that was about to change.

The doctor came and in said, "So, how are you handling this latest development and do you have any questions about Epilepsy?"

She was talking a mile a minute and describing in detail how she arrived at this diagnosis.  "Any questions?"  She paused to ask.

I remembered one time, I was …

Blissful thinking

This has just been a week of stuff...lots of hard stuff so it only seemed fitting to finish things off with a trip to the dentist.  I hate the dentist.  I have always hated the dentist.  I will always hate the dentist.

I had to have a root canal.

I figured I could either be upset and cranky and whine and complain or try to make the best of it.

So...I tried to make the best of it.

I am not very good at taking care of myself and I'm especially not good at asking other people to help me take care of myself or take care of anything really so, when the dental assistants ask if I need anything, I always say, "I'm fine."

Not yesterday.  Nope. I am a tired and cranky woman, on Prednisone, with an abscess in my ear to boot!

Just before I left for the dentist, I dug through the sofa cushions to find some left over Valium.  I was really intent on making this a good experience! They say that attitude is everything!  It's not what happens to you, but how you choose to deal …