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All you can do is hold on

Sometimes, all you can do is hold on for dear life and that is what I am doing.  This week reminds me of a merry go round.  It was all fun and games to start with.  You plant your feet on the gritty, diamond metal, ground down with years of dirt from little feet.  You grab the chippy painted bars and tell your friend to "GO!".

They run as fast as they can and the wind blows and your hair flies out behind you and you think  you might get sick but it's so much fun but then your slippery, sweaty hands slide down the pole and the force of the spin is shifting your feet and you're sliding ever so close to the edge and soon the ground is much closer to your body than when you started and you scream, "stop, stop, stop!"

That's me.  This week, its not so fun watching life come at me so fast and I'm screaming, stop, stop, stop!

We started with an unexpected bout of double atypical pneumonia in Sam.  He came home on Monday night and he was so sick and ran a high fever.  Knowing I was taking Shelbie to Utah the following morning, I hurried him in to the urgent care just before they closed.  We all laid wagers on what the diagnosis would be.  Everyone in the clinic was betting on Influenza but Sam said, "Nope. I have Pneumonia." The doctor said, "There's no way. Influenza."

Nope...pneumonia.  Very same atypical pneumonia he had at the end of November. This time though, both lungs are filled with fluid, top to bottom.  The doctor said he sounds like ripping velcro in his lungs.  So, we headed home with more antibiotics and steroids and cough medicine.

I did not sleep Monday night.  I was so worried about being gone in case his oxygen levels dropped or his fever worsened.  I spent all night trying to figure out who I could call to help me.  When he woke up, before I left, he was trembling and his fever was well over 103.  I hate making choices when it means choosing to care for one child over another.  I ran as fast as I could to get him an assortment of fluids, snacks and other essentials. I left a chart of when to take which pills, the oxygen sat monitor and the blood pressure cuff with instructions of what to do in case of a breathing emergency.

It was terrible walking out the door.

To recap Shelbie's appointments...

1.  They are increasing her plasma and will do so aggressively each month.
2.  At our Neurology appointment, it was brought to my attention that the brain scans she had done when we were in the hospital at Huntsman...the ones that I was told were textbook normal...were absolutely abnormal!  I can't even tell you how angry and upset I was that the hospital neurologist had lied to me! There is very slow activity from the central to left part of her brain. They showed us the spots of concern on her brain that shows deterioration and inflammation. There are a lot of spots! This area of the brain controls movement, balance, co ordination and memory. We witness this deterioration. So, that's scary.

This pattern of brain problems is seen in chronic conditions like seizures, strokes and migraines.  Well, migraines are safely ruled out so that leaves us with stroke and seizures which Shelbie has had both.  Many, many seizures as a child.  Our new doctor thinks there is a strong possibility that Shelbie is having multiple seizures a week or...even small strokes.

3.   At her exam, it was noted that she has tethered nerves in her legs and ankles which I have known this for years when we saw our Neurologist in Seattle but there never seemed to be an answer or further testing.  She also has serious clonus in her muscles and nerves in her lower extremities.  This is a clear sign that something is wrong with her spinal chord/central nervous system. So, they are going to do a spinal tap.  There is concern that perhaps the granuloma tumors she has scattered in her lungs and abdomen have spread to her spinal chord and/or brain.

4.  She will have several more detailed brain and spinal chord scans to look for tumors and Chiari Malformation which Sam has. Those are happening already tomorrow!

5.  She will be scheduled for a 4 day ambulatory EEG coming up next month.  She will be hooked up to a million wires and they will track her brain function for 4 whole days while she does her usual activities...usual being hanging out at the hospital for a week.

6.  Finally, when these tests are done. They will decide about chemotherapy.  I didn't even bring it up to this new doctor, it was already on her plan.  Shelbie's immune system is both non-functioning and overly active and crazy.  Chemotherapy will help to reset that...hopefully and maybe shrink those granuloma tumors. We will decide this soon but its most likely going to happen.

Because this isn't grim enough...they are trying to sort out more mitochondrial issues and how much of all of this is being affected by the short telomeres.

This new doctor was a bright spot in our day.  Her level of empathy is something I have never seen in a doctor before.  Multiple times, she was moved by Shelbie's struggle yet she is strong and smart and the picture of perfection, as was her Fellow.  I know without a doubt that this is part of the plan.  Shelbie's life has been preserved for this doctor.  It's such a new specialty and if we had of been in Salt Lake at any other time in this journey, she would not have been there.  The timing is pretty amazing but that's how God works, he's pretty much perfect, even if I'm not!

It's all so overwhelming.  Sam woke up this morning looking like he might live but this afternoon, he is looking pretty rough again!  Ugh...He has to try to make it to class tomorrow.  Why does this always happen to us...these poor kids just want to be normal and try so hard to do normal things that normal young adults do and it's a constant battle.  That in and of itself is crushing to me.



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