IVIG #17...and some unsettling test results
I had to look back at my blog posts to remember which IVIG number this was this week. SEVENTEEN. Can't really even comprehend that number.
Yesterday started with a pretty easy needle insertion, while rainy skies loomed in the window. Six years ago, we lost our friend Bryan. The 15th is always a difficult day, but starting IVIG on the same day was somehow calming for me. He has been with us throughout this journey, and I was thankful for our guardian angel looking down on us as we started another procedure.
The nurse came in after running the typical labs, and she said, "Oh, I saw your labs in there from last week so I brought the results to you." We waited four months between IVIG's so we could have accurate results when testing his levels in certain areas. I had asked Dr. G to run several tests, but he only wanted to evaluate his functioning in specific labs. Everything looked great, except his ANA. The antinuclear antibody (ANA) test is used as a primary test to help evaluate a person for autoimmune disorders that affect many tissues and organs throughout the body (systemic). Hunter's ANA pattern 1 was "speckled."
So I then broke the cardinal rule #1 of googling in panic mode at a hospital.
A positive ANA test result means that autoantibodies are present. In a person with signs and symptoms, this suggests the presence of an autoimmune disease.
"Speckled" patterns—associated with SLE, Sjögren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
His ANA titers were also positive.
Initially, I thought, "WOW!! Validation!! No one can argue the Autoimmune component at this point!"
And then, as I started to research, my mind turned to worry after worry. In addition to AI Encephalitis, Vitiligo, AI reaction to gluten...were we now dealing with another diagnosis? Were we just finding out about a deeper disease, one that was masked by the severity of the others?
When I was driving to work after the hospital, Hillary Scott's "Thy Will" came on the radio. Yep, completely broke down. However, I think it was the emotions of the 15th, having to watch Hunter sit in the hospital yet again, push his IV pole to the bathroom, and the uncertainty of the future of his health hitting me at once.
I am in complete race day prep, as our 5K is only 3 weeks away. It is so much work, but reading through the labs and realizing that there are 23 other million Americans looking at the same type of results, or perhaps suffering from symptoms with no known etiology..
it is so worth it.
Waiting for a call back from the nurses to review the results and (hopefully) calm my nerves and tell us he is in great health.
On a side note...I will start blogging regularly again with the start of the school year. I cannot believe summer is over!! I will also update with our summer trips and pictures, but my computer has another virus, so my pictures are held captive until I can figure it out.
Happy last week before school starts!
THY WILL- HILLARY SCOTT
https://youtu.be/PAmh3yvmzXs
Yesterday started with a pretty easy needle insertion, while rainy skies loomed in the window. Six years ago, we lost our friend Bryan. The 15th is always a difficult day, but starting IVIG on the same day was somehow calming for me. He has been with us throughout this journey, and I was thankful for our guardian angel looking down on us as we started another procedure.
The nurse came in after running the typical labs, and she said, "Oh, I saw your labs in there from last week so I brought the results to you." We waited four months between IVIG's so we could have accurate results when testing his levels in certain areas. I had asked Dr. G to run several tests, but he only wanted to evaluate his functioning in specific labs. Everything looked great, except his ANA. The antinuclear antibody (ANA) test is used as a primary test to help evaluate a person for autoimmune disorders that affect many tissues and organs throughout the body (systemic). Hunter's ANA pattern 1 was "speckled."
So I then broke the cardinal rule #1 of googling in panic mode at a hospital.
A positive ANA test result means that autoantibodies are present. In a person with signs and symptoms, this suggests the presence of an autoimmune disease.
"Speckled" patterns—associated with SLE, Sjögren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
His ANA titers were also positive.
Initially, I thought, "WOW!! Validation!! No one can argue the Autoimmune component at this point!"
And then, as I started to research, my mind turned to worry after worry. In addition to AI Encephalitis, Vitiligo, AI reaction to gluten...were we now dealing with another diagnosis? Were we just finding out about a deeper disease, one that was masked by the severity of the others?
When I was driving to work after the hospital, Hillary Scott's "Thy Will" came on the radio. Yep, completely broke down. However, I think it was the emotions of the 15th, having to watch Hunter sit in the hospital yet again, push his IV pole to the bathroom, and the uncertainty of the future of his health hitting me at once.
I am in complete race day prep, as our 5K is only 3 weeks away. It is so much work, but reading through the labs and realizing that there are 23 other million Americans looking at the same type of results, or perhaps suffering from symptoms with no known etiology..
it is so worth it.
Waiting for a call back from the nurses to review the results and (hopefully) calm my nerves and tell us he is in great health.
On a side note...I will start blogging regularly again with the start of the school year. I cannot believe summer is over!! I will also update with our summer trips and pictures, but my computer has another virus, so my pictures are held captive until I can figure it out.
Happy last week before school starts!
THY WILL- HILLARY SCOTT
https://youtu.be/PAmh3yvmzXs
I'm so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don't wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I've got is hurt and these four words
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don't wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I've got is hurt and these four words
Thy will be done
Thy will be done
Thy will be done
Thy will be done
Thy will be done
I know you're good
But this don't feel good right now
And I know you think
Of things I could never think about
It's hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you're God
And I am not
So
But this don't feel good right now
And I know you think
Of things I could never think about
It's hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you're God
And I am not
So
Thy will be done
Thy will be done
Thy will be done
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done
Thy will
Thy will be done
Thy will be done
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done
Thy will
I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store
So, thy will be done
Thy will be done
Thy will be done
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done
Thy will be done
I know you see me
I know you hear me, Lord
Thy will be done
Thy will be done
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done
Thy will be done
I know you see me
I know you hear me, Lord
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