Friday, December 30, 2011

2011 in Review

I was attempting to think back to the year.  I have said it before and I will say it again.  I am so glad to have my blog.  Helps with ones memory.  So year two of JDM.  

We had limps and bumps.  
We had x-rays and scopes. 
We had crossing toes and I don't knows.
We had labs that went up and labs galore.
We saw a dentist and giggled with gas.
We fought flares and getting up stairs.
We lowered meds and upped them again.
We had Make A Wish!!!!!!!!!!!!!!!!!!!!
We are ending 2011 with lots of pokes and I will spare you with thats no joke?
Think its time I end this.........stopping.

All in all I think Gary is starting to respond to the Rituxan again nicely.  The heliotrope on one eye is fading.  The other heliotrope rash on his other eye is taking its time but hopefully by his next infusion it will be even that much better.  I think Gary's JDM doesn't want to be messed with for awhile.  I think we need to keep him in a inactive disease state for awhile.  Every time we think we got it.  His disease is just not that way.  The next time we try to lower anything, I will have to take into account just how long its been and what happened last time.  

My pediatrician said something to me at the beginning of this.  It has stuck with me to this day.  At the time I didn't believe him or didn't want too.  "I don't think we have seen the worst of this".   I pray he still doesn't think that. 

Here are some of my favorite and not favorite pictures from 2011:

After the last Rituxan infusion.  Poster for miserable.

Tuesday, December 27, 2011

Is it working?

Merry Christmas and Happy New Year!  It always comes with, I can hardly believe another year is in the books.  Life is going by so fast.

Gary is doing pretty good.  We had our IVIG infusion one week away from the last dose of Rituxan.  Aunt Amy was asked to come this time so she did.  We told Auntie it would only be a half day.  It turned into a full day.  : ( Sorry Auntie.  This infusion was a little rough on Gary.  I think the back to back infusion made him less tolerable.  For whatever strange reason, he could taste it.  Every time they flushed his IV.  Every time they started a new medicine, he could taste it.  He would wince, grab his tongue and say yuckie!

I can only recall a few infusions where Gary did not fall asleep.  We have another one.  At the end of the infusion, he started having a reaction.  The first sign was irritable.  He was laying in the chair.  The nurse bent around him pinching his leg.  That set him off.  He tried to cry but went into complaining he was hot.  We didn't think much of it.  He said it again.  I took his blankets away and still didn't think much of it.  The IV came out we were ready to walk out when he complained again and began to scream.  I ripped his shirt off to cool him down.  His skin was red and blotchy.  Great.  The IV was already out.  Got to be kidding me.
They called rheumatology right away.  The gave him a big syringe full of benadryl.  His blood pressure was high and so was his heart rate.  The nurse came in and said they needed us to stay another hour.

The benadryl worked like a charm.  The next few days that followed were tough.  He was sick for 4 or 5 days with headaches and diarrhea.

As Christmas rolled around his color had not gotten any better.

He is better though now.  I was very close to having his levels checked.  But I remember the past where is color gets really awful.  They have never treated his color so I didn't take him in.

Tomorrow we have a dentist appointment.  Next infusion is Jan. 11.

Monday, December 12, 2011

Rituxan Part 2

Awww the love of infusion.
This infusion we did solo. Just me and my little boo.
We checked in at 4:30pm.  They were running late.  No problemo.  I mean I did ask what is the delay.  I have to.  My four year old knows what is in store for him (IV) so to prolong that is not the at the top of my list.  I instantly asked a nurse what was the delay.  It was more of a reflex.  Nothing as changed much.  Capillaries look  a little better.  Labs good.  Strength, clinically good.  Home.   Hmmmm.  I question it a little.  Like suddenly he cannot get up on my bed no matter how hard he tries.  No, not an attention seeking thing.  He cannot get up on the bed, pulling himself with the cover, stepping on the side rails.  Nothing.  Leaves him frustrated.  Leaves me frustrated.  I am left to wonder is it normal for a four year old not to be able to pull himself up on the bed??  He was able to do that before.

It was fine he we were delayed.  A Wednesday night.  Daddy went home to be with the kids.  They are great about setting the doctors up.  I was told twice it would be 30 minutes.  It was only 15.   Clever way to set my emotions up.  Really I didn't mind.  We went over the usual.  I do agree he is doing better.  His gums are a bit better, skin is less purple.  I decided this time to pack up a couple of things we don't usually bring.  The distraction technique came in to play nicely.  So nicely, I think Gary was actually excited to stay the night.  I packed our Wii up and a gingerbread house.  We were put in the same room as two weeks ago.  Luckily our roommate had not checked in yet.  He was still coming out of surgery so I quickly jumped over to the window.  In my opinion, that is the prime spot! A view of the cranky.  Yes!  Ahhhh the little things.  No fair to our roommate but guess what?  He was 18 years old and was having a really rough time coming off the anesethic.  He vomited repeatly.  The. Entire. Night.  I would like to run a poll.  Crying baby or listening to someone puke all night.  Hmmmm.  Tough one.  Anyway, the IV team passed by the room.  Gary knows the sound of the cart.  He knows their voices.  I was working hard to get the Wii going.  He froze and looked at me with fear.  "Is da pokie ladies!!!!!!".  I told him not to worry. Our nurse was getting ready to do the numbing cream. Her experience was lacking but she was attentive.  I had also packed another little surprise for him.  New Lightening McQueen Pajama's!  So before we hit the showers, the IV team wanted to take a look at his veins and mark with a black sharpie marker were they wanted the numbing cream put.  We have never done that before but OK.  So that is what we did.  She lightly applied the cream.  In all our stays they have always caked it on thick.  I asked her to put on more.  She said sure.  By the time the IV time came back around it was someone we had never met.  I have to say when I see someone at Children's hospital on staff that deal with us, that I don't recognized, I always point that out.  "Hi, I haven't met you before?  Are you new?"  My confidence I think is a bit arrogant.  Its not like I own the place. 
So the whole marking the vein with a sharpie was funny.  The ink smeared in the numbing cream.  It was a big grey mess.  But luckily MJ, our friendly IV team friend hit a great vein in the crick of his wrist.  He cried but not as much as the shot.

The Shot
Nurses in training was the name of the game this fine night.  She was being supervised by a senior nurse.  Sometimes that gets a little confusing.  Two people running things.  One person missing things while the other reminds them and tells them how to do things.  There are so many details that come with that job.  On to the subject of the shot that hurt Gary and my world.  With the new nurse armed with an enbrel shot, she desparately asked me if I wanted to give the shot.  Her manbee pambee look.  Her lack of confidence.  It drove me to say, "sure, I'll give him the shot."   I wish I could take it back.  I don't know what went wrong.  I have gotten our shots at home down to no tears.  Whiney, a little, but no pain or he copes with that pain.  Gary was in store for more that one poke that night so I wanted to knock it out, get it done.  Can I go back in time and step in and say do it later?  Please.   Please. Please!!!!!!!!!!  It was the worst.  First they did not hand me any  alcohol swabs to clean his skin.  I was ready to give the shot on the top of his thigh.  They had to scramble to find one.  I mean, hello, your nurses.  Why would you hand it to me without following what you would do.  As I got the alcohol swab done, she handed it to me.  It did not look like the one at home.  It first looked like one of the pen kind that you shoot the trigger.  They were like, what are talking about?  Ok so.  Pause here.  On a professional level, if a mother shows fear, lack of knowledge or lack of know how, as a nurse I would step in and say, wait up here.  Lets go over this.  But no.  They just let me look like an idiot.  Once she revealed the needle I wasted no time.  At this point, he has seen it.  I want the fear and agony of it to go by just as fast as the shot does.  He screamed.  He turned bright red.  He rolled.  He screamed some more.  What had I done?  Too deep?  Too hard?  Too fast?  Too slow?  Was the needle larger than normal?  Was that even the right medication?!!!!  They showed no concern, well they asked if he was alright.  I instantly said, "he never reacts that way?"  They scurried out of the room.   He was due for another lab to check tacrolimus levels.  I wasn't doing that one!!!!!! Still not over this.  I really wish I know what I did wrong.  I do know that I will never ever be the one to give a shot at the hospital.  The nurses should always do it.  But then again, if they had given it and he reacted that way, I would have been just as if not more upset.    He recovered fine.  Lots of sighs and sniffs.  And my heart is broken.  It still is.  Never knew I could break my own heart over an action. 

1:00AM What is the hold up?

Gary dozed off about midnight.  It was from the benadryl they had ran.  They had come in to tell me his methoprednisone was on the floor ready to go.  He was snoozing so I decided to rent a movie that I had been so excited to rent all week just for this night.  I got about an hour into it and decided to pause to see how he was doing.  Too my frustration, nothing was running in his IV except saline.  A nurses assistant came in to take vitals.  I asked her with spite, "why are doing vitals?!"  She had a thick russian accent.  I could not understand what she was saying.  Something about they are getting ready to run the first med.  Soon the nurses, thing 1 and thing 2, came in with his methopred.  I asked what was the delay?  I said it has been over an hour since the benadryl was ran.  The methopred should go right after that.  Not a long stretch of time for it to wear off.  It will wear off in middle of the Rituxan.  Then we have to dose him again.  Then he gets more that he needs which delays things again.  I felt sorry for them.  They said it got caught up in pharmacy. 

We did not check out the next day until 430pm.  Which,  whatever, it is what it is.  I was exhausted as always.  I really had to be on my toes this time.  They tried to give him a TB test.  I said no.  They tried to give me a drug to give him that was for a bacteria infection.  Gary does not have a bacteria infection.  They did start him on magnesium and a protein tablet.  Today was the first day I was able to get him to keep it down.  He has been throwing it up.  But hopefully I found the way today.  Mixing his multi-vitamin the magnesium and chocolate sryup.  We will see.

We have IVIG again this Wednesday.  Then a break from the pokes!    As I explained to the doctor whom we hadn't seen in awhile this dose of Rituxan will be the true test if Rituxan in fact is working on his jdm.  He has had lots of steroid pulses as pre-meds to the medications.  Once those wear off, we will see if the Rituxan is doing its job.  Last dose they also increased almost all his medications.  We did not know if it was from the increase of the dose of Rituxan that got him out of that flare six months ago.

My Favorite
"It is a little dishearting the b-cells that Rituxan deplete have never come back."  Implied why run it if it kills something thats not there.  Then whats working?  Whats not?  Love doctors.
  Gary and I got endearing messages like, "we miss you guys."