Friday, September 21, 2012


I think I am officially burnt out.  I am burnt out on all of it.  Funny thing is, this is something you can't take a vacation from.  I feel so drained but want to scream.  I am so glad to me done with monthly infusions until next month.  We are still heading back once a week for methopred infusions.

Wednesday we had our clinic visit and admission for infusion.  We were just there last week and the week before.  And the week before that.  So little to no changes to report except for one.  Limping.

Our main rheumatologist came in but it was fast and brief.  She said it was because something was tight.  Could be.  But confuses me the most is last time this happened, or when it happens, it has been labeled hip weakness.  So you can see why it that can be a bit tormenting.  It torments me because if I think it is weakness then what am I suppose to do about it?  Ok fine.  Something is tight.  He will be getting back to physical therapy twice a week then.  He obviously can't go without it.  We stopped it because of school and infusions and appointments.  It was hard to fit it in.  Our physical therapist agreed that we should let him get use to school.  But with the elbow, extended stay at the hospital, coming back week after week he, he hasn't even had a chance to do that.

On Friday the rheumatologist called and said they wanted to start him on bactrum.  I was in the car driving to the hospital for a dental check.  I heard her say 4 times a day.  I asked her to call it in to the pharmacy so I could pick it up after is dentist appointment.  We would have had to wait 2 hours for it.  I have spent so much time there lately I was not up for it.  I knew I had some bactrum from something awhile back.  I did!  So Monday and Tuesday I put it on his elbow wounds 4 times a day.  I stopped by pharmacy to pick up the fresh tube on our way to being admitted which was on the same floor.  As the pharmacist brought the prescription  from the back I gasped.  I asked her what is that?!  I asked if she had the right patient.  It was an antibiotic.  Apparently they wanted him not on a cream but an oral antibiotic. An anti viralish sort of medication.  With the extreme immune suppression he is on, a safeguard of sorts.  Ummm.  Oooppsss?

So why the F's.  F sounds for frustration.  I truly feel sick from the amount of frustration I feel.  Whether I caused it or the hospital or whatever.  This admission for cytoxan, and IVIG, went.  In clinic it was just basically an overview.  What came from it was this plan:  If he is doing well, everything stays quiet, and we are liking what we see, then we push forward with continuing cytoxan and IVIG.  The first move we make is to slowly take away the weekly steroid infusions.   Go from there.  IF he doesn't do well, continues with signs of disease activity like muscle weakness, more calcinosis, rash activity, then we will write down that we gave cytoxan a good try and switch up treatment.  The treatment they want to give him is Orencia.  Orencia targets calcium process as I under stood it.  Ok.  It's a plan.

The infusion itself did not go well.  Well, from the over all health of him feeling his typical it did but a very curious thing happened.  Back on June 19th is when we found out about our buddy Mason Smedley.  It was that very room I sat in complete grief and anguish, mourning.  That night a mistake was made.  I had fallen asleep because of pure exhaustion.  I did not over see every medication.  The nurse who administered the IVIG infusion did it at full rate.  Why is this bad.  Gary has had reactions and even has been labeled "allergic" to certain brands of IVIG.  So to be very careful we always run the infusion at half the rate.  It works very well.  Minimizes side effects like headaches, nausea, tummy pain, and the over all ill feeling. It has worked great.

We were put in the same room this time as well.  The Cure JM Foundation was in contest on facebook for win grant money.  I was following it closely.  So after getting Gary's port accessed (which went amazingly well) I took a minute to check in and see how we were doing.  The Smedley Family gave the foundation a precious gift.  They posted a very private photo of Mason on his final day here on earth, and asked everyone please vote.  I cried.  It felt so weird to be in the same room,  the same day of the month  (19th), and looking at those pictures.  What do you suppose happened again?  It happened AGAIN.  I fell asleep.  I did wake up like 5 times that night to help him go to the bathroom so my body was aching for sleep.  Finally around 4am I slept.  I was in and out of it but officially up at 8am for rounds.  Talked to the doctors, then settle back in the finish the rest of the day.  Suddenly I heard the nurse say he didn't need vitals done anymore to a cna because his infusion was done.  My heart flopped.  "What infusion is done?".   She was aloof and seemed too act clueless.  "Oh, um, the IVIG."  She said with a cheer and tried to be confident.  I quickly shot her confidence full of holes.  "What time was it started??".     "5am".   To my horror I looked up and saw it was only 9am.  The IVIG at half rate to minimize the side effects and protect him against allergic reactions was suppose to run over 8 to 10 hours.  I fired question after question.  Her only answer was, "I don't know, and I wasn't told".  I began to cry in frustration.  "I can't believe you guys did this again."   I backed off and followed it with, "I am sorry, I know you are not responsible for this."   Later however, I thought she was.  When she came on shift she should have caught the error because she started at 7am.  The IVIG was running at the rate under her watch.  I pulled the blanket back, and under neath it was my ghostly white chubby little five year old, sweaty, but sleeping.  Nothing could be done.  I felt bad for the nurse.  I felt bad for me that I let if happen.  Most of all, I felt so bad for him.  He woke up about 15 minutes later.  Voice groggy, needing to pee.  Our neighbor's family came to visit, so the happy sound of family reuniting turned into what sounded like a cocktail party.  I so truly wished he could have just kept sleeping.  Gary refused breakfast.  He intermittently kept gagging has if he the nothing that was in his stomach, was about to come up.  The resident doctor came in, sat down to apologize.  At that point I didn't want to talk about it.  I didn't want to discuss it anymore.   It was just has much my fault as it was there's. But of course, YAP YAP YAP. My favorite was, "good thing he tolerated it."   Go away from me.  I had them run zofran through his IV which helped a lot.  It perked him up a little.

So they were ready to discharge us.  I told them no.  We had an appointment at 3pm on the other side of the hospital.  It was purposely planned that way.   The appointment was with plastic surgery to look at his elbow.  We sat there all day.  He slept for a couple hours as much as he could.  That particular room, because of its location (in front of elevators, nurse station where everyones call light go off) sound more like a carnival then a hospital.  When it was time to head back over to clinic for the plastic surgery appointment, he could barely walk.  His limp was pretty bad and he was so very very red.  His arms were red.  His legs were red.  His little face was red.  He was quiet.  I had my hands full of all of our stuff, so I could not carry him.  I asked if he wanted me to get him a wheel chair, he said yes.  I paged our nurse.  She said sure.  I watched her step into the hall, look up the hall, down the hall, then say, "oh I don't see one".  I shook my head and said, "baby you are just going to have to walk."  I told him I would sit and take breaks if he needed.  The nurse saw him take a step and wince and get woosy.  She got on her phone and said wait I have someone looking!!!   I said, "nevermind".  Done.   We made it.  The more he walked, the more he once again perked up.  At clinic we checked in right on time.  Gary layed in the waiting room.  45 minutes later they finally came and got us.  I was so close to leaving.   I could not miss this appointment though.  OH thats right.  I could have!   She did NOTHING.  She didn't even take off the bandage.  Thank you.  Thank you very much for having us wait which put us in rush hour traffic.  It ended up taking us two and half hours to get home.  They just want the hole to close on its own.

I am tired, and just so burnt out.  I need to find my reset switch.  I only feel worse today.  But you know what the good part is?  This isn't about me.  It is about my son.  This morning he woke up cranky but more or less good considering.

Saturday, September 15, 2012

Light and Dark

Elbow.  Doing.  I feel like I am doing one of those poems on stage back in the early 70's, when the whole beatnik groups exsisted.  

Confession.  So after the whole elbow thing, I think I may have slipped into a little weensy teensy depression.  I have no idea why.  Well, I do.  And I don't.  So many good bad things happening in my life.  Blessings and troubles can overwhelm.  Drags me down a steep ledge that leads to a ravine.  I am all about climbing out.

I haven't recovered from the week in the hospital.  I don't know what I wish for but, I know what to pray for.  I pray for continued protection over not just Gary but all my children.  

I feel like I struggle with anger and happiness.  I really am a blessed, lucky woman.  My family is amazing.  The people that surround me are so wonderful.  But yet, why, when sound goes away, and the worlds fade, I become so emotional, and I cry.  I know why.  I know, I can't control it.  It is like the great sadness.  It effects me when I run.  Knocks me around.  I can't even imagine where or how I would be without my parents, my sisters**, my brother, and the Cure JM Moms.

Enough of the MUSH and oh pity me stuff.

Gary's elbow is healing?  I think.  Never done this before.  We were in Wednesday for Rituxan.  We were given our own room which was so wonerful.  LOVE.  Makes things so much better.  So much smoother.  Not much new.  Just workin the rough sea.

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