Don't Want To Go Back

Instead of the gagging being a side effect of methotrexate, it actually wasn't it.  It was a start of a storm.  A stomach flu storm.  Wednesday night he had the return of the evil diarrhea.  Thursday, tummy pain.  More diarrhea then vomiting.  He continued to run around so it was confusing.  Friday morning, vomiting and diarrhea, from both ends.  Oddly enough he was not "ill" but was getting run down.  Friday night, with my high heals on, all dressed up for a birthday party I was suppose to go to for a good friend, I spent snuggle him, worried.  Mom slipped back into her pajama's,  and back to bed we went.  Gary slept a long time.

All of his calcium deposits were enlarged.  No fever, but he began to throw up the water he drank and continued with diarrhea.  Saturday morning I had enough.  We called the rheumatology doc on call at Seattle Children's, packed him up, and headed in.  I didn't feel like I could keep in front of his hydration.  He was red with a rash that looked like he had scratched up a storm which he had not.  This bug denoted on Wednesday evening because that is when the rash appeared.  Much like the one he had at diagnosis.  His JDM looked like it was glowing bright.

Once in the emergency room, labs were taken.  They gave me a choice to take him home if I felt confident I could keep him hydrated.  I didn't feel that way.  His food aversion and now drink aversion was troublesome. Hydration through IV was the best bet in my book.  They agreed and admitted us.  That night he put a special show on in the bathroom.  Never seen something like that.  I mean, on the walls even.  Explosive to say the least.  Every time he nibbled on food it was consequence.  We waited till Sunday night to leave just to make sure.

We discovered he has open sores on the insides of his cheeks and on the roof of his mouth.  They don't seem to bother him with pain.  The more I get a peak of it I think it might be thrush.  He is on medication to treat that so not sure why it is not working.

I am so glad he is doing so much better.  We weren't sure exactly what he had but now everything seems to be subsiding, everything is coming back on line, it looks for sure it was a gasteronitis bug of some kind.  I do think it is doing nothing for his JDM but it is a wait and see.  His labs were fine.  His C. reactive protein was elevated again but the virus can cause that.  Right.   Sure it can.  

Today he was well enough to go get his eye's checked.  Checked out A okay.  Then we went onto PT.  On the way there I gave him his vitamin D and calcium chocolate chew.  He told me it tasted bad which he had never complained about before.  He chewed it much longer than he has ever.  It somehow turned it into a taffy, stringy like, texture which suddenly, he decided to gag and choke on while I drove down the road.  It gagged him and once again, he brought up the entire contents of his tummy.   All over the back of the car.  I couldn't get him to talk to me so I began lane changing frantically planning a straight shot to the town's emergency room which was 6 blocks away.  I yelled for him to talk.  He couldn't because he was to busy heaving.  I finally saw a gasp of air.   Then another.  Then another.   Then the car smelled like a someone rode the merry go round to long.   If I have to be around barf another second , I am gonna lose it.

Well not really.   But I am growing tired of it.  A little buck naked action in a parking lot at the grocery store to change clothes.  Ran in bought paper towels and 409 cleaner to so some damage control in the back seat.  It was interesting he had a hard time walking around, grapping at his legs periodically saying his legs hurt.

Later at physical therapy he definitely was crabby.  He was not cooperating with any body that day.  She tried stretching him out and said his range of motion seems good today but he is also tender to the touch he seems like.  She made a comment to me that when he doesn't want to do a certain task, he says he is tired.  If it is something he enjoys then he does it no problem.   I wasn't sure how to take that.  I mean, it is true.   But don't we all?  I already knew this about him.   Gary's brother and sister are the same way.  Something they don't enjoy, well, let the drama roll.  He does not however, fake anything.  I don't think she was implying that but unfortunately after a long weekend in the hospital, a long day, I must have been sensitive.

Tomorrow we have to go back.  I really don't want too.  I even contemplated asking for a reschedule for later in the week.   I can  only imagine how Gary feels about it.   He needs to be followed though.  He needs his treatments to make sure we are staying in front of the JDM or extinguishing fires from this nasty bug.    Five days of not being right.  One thing we have to look forward to tomorrow is before we go to the floor to start his IV and get meds going, we are meeting PT at the pool.  She is going to do some work in the pool.



He is in good spirits, so I am grateful.  Tired but grateful.

DAD GOING DOWN
Since it was the weekend, it was nice to have my husband with me finally.  Well until the IV was started.  My husband was holding his hand while Gary screamed, when his head went down.  The nurse called over to him, "ARE YOU OK SIR".   He was pale and spinning.  We told him to sit.  It distracted Gary for sure but we thought Dad was going to hit the floor.  It took him about ten minutes for the color to return to his face.  This is the first time a relative has had this reaction.  My niece did the same thing.  Oh boy.

WHAT MAKES  ME SAD
The happy boy is gone.  He was here when the antibiotics were in his system.  So was his strength.  His strange euphoric happiness we just couldn't get enough of.  He was good hearted, loving, caring, amazingly happy.  He is back to the ornery, inpatient, not on top of the world kid.  I have even asked the doctors, why?   Why is that?  Why is this guy back?  Not saying I want to run antibiotics but it just seems funny to me.