Sunday, November 27, 2016

It's raining, it's pouring...

We are 3 for 3!

Today was Spencer's turn for the urgent care.  Never underestimate the power of God to keep you humble and on your toes.

His problems actually started on Wednesday.  He was complaining that his left eye wasn't focusing and his brain was hurting deep inside on the left.  I did what I always do..."Do you want some Advil?  If you're nauseous I have some Zofran too.  Maybe just take a nap, your eyes are probably strained from all the computer work."

I offer the worst  kind of sympathy but I don't know what to say anymore, and half the time, the symptoms are so random I have no clue what to do.  I do know that it isn't reasonable to be running to the doctor every time something comes up.

It went away after a few hours and then I didn't hear another thing about it mostly because he's been at his dad's house for the holiday.  I guess this morning it flared up again but this time he couldn't focus on anything close.  In order to see, he had to have things at the length beyond his arms reach.  Still, I didn't hear about it until tonight and when I saw him, I was shocked.

His left eye is sort of drooping.  That looks like the only problem but when you lift up his lid there is no white space left, it's completely bloodshot.  Just bright red!   His eye isn't tracking well and his vision is getting worse and the pain is in the back of his eye, in his head, not where you would expect pain if he had pink eye. He's also really sensitive to light.

I took him straight in to the urgent care.  All three kids have the gene for Lebers Hereditary Optic Neuropathy.  LHON.  It raises it's ugly head in young adults.  It starts with blurred vision and then within two weeks, they go completely blind.  I was reading up on it and there is a mutation called LHON Plus...this causes a tremor and heart arrhythmia... A plus?  They couldn't think of a better name than LHON Plus?  You get to go blind...AND your heart stops too!

Anyways, of course the PA on duty had no clue what to do, but to his credit he said, "I have no clue what to do about this but before I start doing anything, I wonder if you would be okay with me stepping out so I can read up on Dyskeratosis Congenita and LHON's and then I would like to call your Ophthalmologist to let him know what is going on." I was super impressed!

They don't think that this is related to LHON's, thank goodness!  They think he has an autoimmune disease of the eye but until we can get in to see our doctor on Monday, they are starting him on steroids.

Science hasn't come very far in the world of Mitochondrial problems which LHON's is.  Some say it takes two genes for the disease to manifest itself and some say the disease can happen with only one gene.  My kids just have one gene.  Oddly enough, they have started doing gene therapy and are seeing great results if it's done before you go blind. I pray we never have to go down this road. I think we have enough to deal with and DC has it's own array of damaging eye issues.

Sometimes, I just don't understand how so many things can happen to us all the time and then I am reminded that DC is an aging disease.  The more a cell turns over, the more damage occurs and the more disease you experience.  It's crazy.  This is a crazy disease with crazy consequences, especially when you have three!

I hate to wonder what's next...

Today, I also received two letters from our insurance company.  One was dated the 16th and the other the 17th. The first letter said that they had approved Shelbie's hospital stay from October 28th to November 3. That's nice of them to let me know more than two weeks after the fact. I just received it today.  The second letter said after closer review, they won't be covering the hospital stay or any of the tests!  Is this even fair?  NOPE. I hate Obamacare!  What a load of nonsense!  I haven't even received a hospital bill yet so who knows how much that is going to be.  Now, I have to go the rounds again and fight for coverage!  This is becoming my latest part time job.   The amount of money I have had to pay out above and beyond our deductible and out of pocket maximum is staggering...all because they refuse coverage after the fact.  It's insanity at its best.

And speaking of insanity...I've about arrived to that proverbial place.  This is where I usually say I can't wait for this year to be over but silly me...this disease will march on into next year.  I'm so excited to start a new debt load of medical bills in just 4 weeks.




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