Monday, September 3, 2012

The Great Event

After our infusion of Rituxan was last week scheduled for the 28th.  Unfortunately, the calcium deposits that were looming before weekend (Aug. 24) were done looming.  The decided it was show time.  Unable to bend his arm, Gary became increasingly uncomfortable.  We called and got our appointment to be admitted a day early.  We are were worried about infection but no fevers, or other signs of infection made everyone feel a bit better.  We were admitted to get Ibprofen through his IV.  I will spare you our experience with the IV team.  It over with and done.  I learned a lesson.  Now I know.  There are different sizes of needles they use to access ports.  The too big ones are not for Gary.  Just nevermind.  PUNCH

By Tuesday morning things were looking better.  The tordal seem to calm his arm down.  We decided to pulse him with steroids twice.  They felt with the calcium putting on the show it is, it was part of the flare he experience due to not pulsing him with the steroids the way we should have.  So by Wednesday, we were ready to go home. 

Thursday morning was Kindergarten orientation.  OOftah.  That was overwhelming.  A little for him and a lot for me.  So many kids.  I waited until everyone left, and did it.  I cried.  Ugghhh.  I didn't want to cry but I couldn't help it.  I talked to her for what seemed like hours.  I wanted her to know every detail.  Everything possible to make her understand how serious this is.  I showed her his port.  I like her.  It kind of helped that she was familiar with ports.  Her little nephew has one.  His official first day is tomorrow.  No strapping on a back pack.  No stepping on to a bus.  No first day outfit.  No first day pictures.  Gary's first day will be spent in a hospital bed.  To be honest, am alright with that.  : )  I feel, protected. 

The Great Event
After kindergarten orientation things took a turn.  He began to hold his arm funny again.  By the hour, his play was interupted by winces and holding his hand with the other.  By night time, things got much worse.  I am surprised we made it through the night but I thought maybe if we made it to the morning.  His elbow/arm was so bad, I had to give him tylenol and oxycotin every 4 hours, if that.  I had spoke to the rheumatologist earlier that day.  Told them ok, what do you got that I can give him.  At that point I had no idea just how far away I was going to let this get from me (referring to the pain, redness, and swelling).  She called in naproxen and wanted him to start a medication they give gout patients.  Naproxen first to make sure his tummy handle it.  The two days later add in the new medication.  We went to pick up the naproxen.  It was in the evening, around 7pm.  They informed us they didn't have it.  So I was upset but thought I would just get up in the morning and drive to the hospital pharmacy to get it.   Well, that didn't last.  The night was horrible.  He got little sleep.  I tried so hard to stick to my plan but by 4am I knew naproxen was not going to cut it either.  I had to get the kids off to school, then onto the ER. 

I told them I cannot manage this at home.  There is only so much bottles of medications I can give him for the pain.  They completely agreed.  One look and he said, "lets get xrays, and get you to your room."  Just like that we were admitted.  As soon as the tordal hit his system, it was straight snoring.  Poor little guy.  He was so exhausted.  We were so for the help we needed to get him out of pain.  His elbow looked horrible.  He couldn't move it, breathe on it, nothing.  They scheduled an MRI for 10.  The whole infection thing is the one thing no one wanted to fool around with.  So he was not allowed to eat.  It wasn't as hard as it has been in the past to do that because he was on pain medication.  But when he got hungry, it was annoying.  Ten pm finally rolled around.  They walked us down.  There we sat for another two hours.  I am so thankful to my sister and her husband.  They were there with me every step of the way.  Gary's father had proir engagements that a hospital stay did not warrant cancelling.  The MRI people put him night night and sent me back to our room to wait for him.  He didn't come back until 230am.  Nerve racking but I was also having a hard time keeping my eyes open because I had not had much sleep the whole entire week.    We are all tired and spent but very grateful, again, for the help. 

The MRI showed no bone infection.  No signs of abcess.  Just cellitius in the layers of tissue.  The muscle was a little inflammed but he does have dermatomyositis so.

THE FOLLOWING ARE PICTURES OF THE PROGRESSION OF CALCINOSIS.  IT IS NOT FOR THE FAINT OF HEART.  IT IS NOT TO TERRIBLE BUT ENOUGH TO PUT THIS COURTESY WARNING UP TO FINISH READING AND EXIT OR GIVE A GLANCE.  Why put them up.  Because I want other families who experience this to be able to have access to our experience.  To learn from it, to help.  I am not posting these to take advantage of my child or try and gross you out.  If you are grossed out, well so is Gary.  He nearly barfs when we change his dressing.  So if you can't handle of picture, think if it was on your body. Oh that just sounds rude and bratty of me.  My personality is a little alterted right now.  I sort of apologize.

Started out with discomfort and redness.
More discomfort, raised, unable to move arm.
Calcium released.  Here he was on morphine.
With pain management, antibiotics due to a staff infection, he is feeling better.

And now a hole. 

More calcium exiting.

Holes left behind from the calcium exiting.  Treating the wounds like a burn.

Official diagnosis: Progression of calcinosis, staff infection


  1. His arm looks so much better!!! Is it really better? Did they put him on colchicine (aka Colcrys)? James has been on it for four years with no side effects so I hope that is the gout med you are talking about.

    Praying for you guys every day and so hoping Gary will have a great K experience...once he finally gets there.

  2. My pictures are out of order!! Top one is day one bottom one is day 2, second picture is day three, third picture is day four or five. These days were over a week and half or so. He has a staff infection as a result of the calcium doing its thing. Yes! Started on the gout med yesterday. Lots of good things happening to get us home.

  3. Please don't apologize for posting pictures that bring awareness. It is good for us to see what this nasty disease does. Poor Gary has been through so much!

    Praying for him and for his year in kindergarten! How wonderful you have a teacher that cares and has some knowledge about ports. :)


  4. My husband found your blog but left it to me to comment. We've been looking for blogs that deal with JDM since one of our daughters was diagnosed last month. Rachel is two and a half years old, and she's actually doing really well. Apparently, we caught it fairly early.

    Anyway, I hope that things are going better for Gary and that you are back home now.

    I started a blog, as well, for Rachel; here is the website if you're interested: