Tuesday, May 22, 2012

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.

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.

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.


  1. Erika,
    If anyone understands exactly what you are saying about this horrid JM/DM roller coaster ride it is moi! I have been their with having the flu and being on Methetrexate and JHU told me the meds made the flu worse. Yeah imagine a 33 year old on the toilet with diarehha and puking in the bathtub or trash can or whatever seemed to be close by! My muscles got weaker, I couldn't walk well and my face was as bright as a tomato. I was told that when I am sick, in pain or flare my rash will show up! After I had surgery, awake, yeah smack me for that one, my rash was hard core and then I had the raspy lost voice and the trauma of surgery triggered a flare which was horrid and upping of steroids again. Now I am tapering and loosing my voice again. It's like what in the world?!?! I was going to tell you it is very common to get the ulcers from Methetrexate I get them exactly how you decribed on the sides of my mouth, my cheeks, lesions in the upper top wall of my mouth, sometimes they don't hurt which will be a relief for you to know, but sometimes they do, and when they do I am prescribed Magic Mouth which is Novacain, Maylox and something else that numbs my mouth! You should ask Children's about it and maybe they could prescribe it for lil man! I don't wanna sound like I know all just suggesting lol, since I have the same stuff blah! Anywho OMG I got the same reaction from a PT before and didn't go back, JHU told them here to go slow with me for my leg muscles are shot and will never be the same, damage that has been done will not come back, they are preventing further, so when the sweet girl was working with me it was all good, when her terror of a supervisor wanted her to up the antics, I flared like a crazy person, couldn't hardly walk for a week it was brutal, JHU didn't want me to go back there, so we have took a break from PT and when we do go back we will go to someone who knows DM. Good lord of course he isn't faking, of course it hurts, and we get out of breath, and can't do like others, it feels when we walk down the stairs we have ran a marathon, shame on the PT lady, I wish I was there lol, I would have SUmmer raged, I have been like that lately not myself, to much steroids, to many pulses, I'm just a mess, I bet all the meds, ups and downs are causing Gary's moods too, mine are brutal, poor Greg lol, he seems to be the one that gets them lol! I hope ya'll start feeling better, omg sorry your hubs almost passed out, my hubs has almost to when he has saw the numerous pokes, he stays behind the curtain now, he once yelled at the nurse that she was hurting me lol, ha I was fine, guess I'm used to it...eeeeeew that's terrible to say used to all the sticks blah! Well I just have this feeling 2012 is gonna be Gary and my year! We are gonna be in remission I just know it or at least well on our way! The Dr.s say I am doing so much better, the meds are working, I do get nauseated with Methotrexate and Diahrea with it and the ulcers and stuff they say side effect and now with the chemo my potassium is really low so they had to add this huge dose of it which makes for a more upset tummy so zofran is my bff again except for the headaches blah! love you girl...sorry for the rambles hug Gary for us, tell him Kelcee said hello oh and I love the header photo...it rocks!!

  2. Hi Erika,

    Oh girl you need a lot of support. This is a very tough ride and so hard to deal with all of this when it is your child going through this. You just don't know exactly how they feel. I am glad Summer described how she feels and just how rough this is.

    Praying for you and Gary often.

  3. This is my Zoe when her blood sugar is actually in a normal range. People must think I make excuses for her beahvior, but she has so many other ways she acts depending on if she is low or high. Hyper, lethargic, sick to her stomach, sad, rude nasy and mean, quiet, zoned out, running around in circles (literally! and running into things!). When she is in a normal range I think - sigh, here is my Zoe. My real angel Zoe, the one we used to always know, before she was sick. Can I just pause this right now forever, this moment where she feels well? God in heaven, come soon so that we can be rid of our old sick bodies!