Friday, May 28, 2010

Hey Mason

I shall have a tantrum.....

Oh being patient is so hard sometimes.

Especially when it comes to your child having Juvenile Dermatomyositis.

I will have small issues that nag me and nag me.  Like my shoulder will actually ache because I need to know.  I need to know why his eyes are puffy.  Nothing dramatic.  Nothing crazy.  But enough for me to notice.  It's a symptom.  Facial swelling is part of the disease.  It almost looks like the inside of his eye is a bit irritated.  Slightly bloodshot eyes but nothing that requires an emergency helicopter 911 flight.  It was happening last month when we decided to do the Rituxan.  Like my previous post says, we have to wait to let the Rituxan work.  What if I don't want too?  I want it gone now.  I want to start tapering.  Insert kicking legs and wild arms.

So I found this video the cutest little girl on how to have a tantrum.  Maybe I will follow it like as exercise video.

Wednesday, May 26, 2010

2nd Rituxan Infusion Complete

(Forgot to publish this one)

Thursday, 9:30 am we went the hospital to get our 2nd infusion of Rituxan.  So it is now official.  The full dose of Rituxan is in.  If he gets another dose it wouldn't be for another 6 months.  Now its wait and see.  They didn't bother taking labs this time because we just had them done 2 weeks ago.  Regardless of what they are, it wouldn't matter.  They are going to give the Rituxan time to work.  Gary did very well witht he infusion.  It could not have gone any better.  We finally had the xrays done of his ankles.  They looked good.  We talked about it may be tight hip muscles.  Just one of those things I will continue to keep an eye on.  After the Rituxan, we did the IVIG infusion.  It went well too.  Frequent vitals, all night long.  He is full of energy today.  Of course it whipped me!  It always does.

Saturday, May 15, 2010

Full Throttle

Oooohhh my goodness.


Constant, go go go go go go go.  I really don't think he was ready for another steroid pulse.  His energy is relentless.  Unfortunately, unlike most three year olds, it tends to catch up with him.  With the nice weather as an additive to super hero like qualities, (not to mention the many many layers of 70 sunblock), his ankles seem to be acting up a bit.  I tried to get him to wrap them up in ace bandages to give him some extra support.  I cut it in half to make it sized to fit him.  That did not go over well.  He wanted no part of that.  He kept falling though and has a Frankenstein step going on.  He loves to full on run.  An ace bandage gets in the way of that.    I am not overly concerned about it right now.  On top on his energy he has been in one I'll-get-out-go bad moods for the past 2 days.  Tantrum after tantrum after tantrum.  Either he is over doing it but fails to stop because he is a three year old or I don't know.  I say I don't know because I of course fear the worse.  I can come up with one hundred million things I fear he is in a bad mood.  But then you drop the mother act.  Go with logic.  Sometimes you just in a bad mood.  I also have another theory.  Tale end of terrible two's?  At the peak of terrible two's is when he had a lot muscle weakness.  He has some making up to do.  I can remember back to last year when he would try to throw a tantrum.  He would involuntarily end up on the floor because his muscles could not support the motion of a tantrum.  Then he would get stuck on the floor unable to get up.  So yay to these tantrums?  Be thankful he can have them?  I think not.  Nice try though.  We go in Thursday for our second dose of Rituxan and IVIG which means we won't be able to pull off the a day stay.  That will put us in for the night.  And another lovely dose of steroids.

Happy Birthday to McGuire

I missed my oldest's Happy Birthday Blog wish : ( !  We celebrated on Mother's Day.  McGuire is 11 now.  Happy Birthday to my first, most special boy.  I love you McGuire.  I love your passion and kindness.  All the other stuff we will figure out and get through.  I couldn't ask for a better son.  Keep up all the great work.  Keep trying with all your heart.  Don't sweat the small stuff.  (PS You had a big head which made your birth difficult).  LOL   I will always remind him of this.  I do not wonder why he rolls his eyes at me.  I would roll my eyes at me too if that is possible.

Friday, May 7, 2010


Yay!  Were home.  We got in at 4am but we did it.  I think it made a world of difference for him to wake up in his own bed.  He is in a wonderful mood this morning.  Daddy decided to take a day off and spend some time with him.  Daddy works a whole lot so we don't get to see him a lot.  It's a strong coffee kind of day.

Busy Bleeding Posts

I am doing a lot of posts huh : )  Well I just couldn't resist and not share are drama.  So a few hours ago Gary floated down from his benadryl dream.  He woke up hungry like a wolf!  He was ravinous.  Somehow, the intern doctor thought it would be cute to write orders for a liquid diet.  His dinner was broth, yogart, and juice.  Mmmmmm.  I don't think so.  Have a ever shared with you what a different person I am around my sisters?  I maintain being polite but drop subtle death threats.   "Yeah, find out why she wrote orders for a liquid diet.  Someone is gonna get it."  I heard the nurse walk back to the nurse station and say, "that mom in there is threatening me."   I called after her, "no I'm not!".  It was all in good fun and we were all giggling but......not.   I order Gary a pizza because he was truly that deseparate.  I had read it either kills your appetite or turns it up.  Guess we know which one.   He ate three large slices of cheese pizza from Papa Johns.  I was impressed.  We had to cut him offf in fear of it all coming back up.

So one of the CNA's asked my sister to move out of the bed so she could get Gary's vitals.  Sounds like no big deal I know, but I didn't like it.  I have been coming here for a year now.  At least once a month for over night stays ect,.  NEVER have the nurses asked me to move.  They have always been extremely polite and maintain that comfort barrier.  They always do vitals around the patient.  All of there instraments reach just fine in every direction.  I know I must be in a mood but, no.  No that is not ok.  He was snuggling with his Auntie which was keeping him calm.  I sound like a horrid pain in the neck, but I was at least nice about it.  I talked to the main nurse about it.  Asked her nicely to talk to her assistant.  Besides, I got mine back.

So soon after my chat with the nurse Gary decided he needed to go potty for the 32nd time.  I carefully lifted him out of bed.  We do business in a urinal so they can measure.  While in the middle of said business, a beautiful crimson poka dot pattern began to form on the floor.  In slight terror I recognized what it was.  Blood dripping from some where.  I panicked slightly but gained control.  My greatest fear was that it was coming from the place where we were conducting business.  That was still in the plastic urinal.  Relief one.   I went the next logical place.  The nose.  Relief two.  I still could not find it.  Out of the corner of my eye I finally saw it.  The floor was getting pretty colorful at this point.  It was coming from his IV.  The nurse had to use more than one access.  One for normal saline, the other for Rituxan.  So it was a two for one kind of IV.  Anyway, that med port access had came off!  It had slipped off so the Rituxan was running on the floor.  After I just got done chewing them out for silly indiscretions, I need them.  Funny how that works.  I am not sure if it was because we took his hospital gown off because he was hot and let it hang on the iv pole which put weight on the tubing which pulled it off.  Or the nurse did not put it on tight enough to begin with.  No matter.  We all worked quickly to clamp it off, turn the Rituxan off, and do damage control.  BAD   bad is now that he had missed some off the medicine because it ran onto the floor.  Really BAD pharmacy would have to mix a whole new batch if they wanted him to have the small amount.  Everything else like the tubing could be replaced because it was considered contaminated from being on the floor.  We all held our breath as the nurse called the pharmacy.  If the answer was he needed it would have meant a very costly accident had happened.  I don't even want to think about  how much the Rituxan is.  The news was good.  The pharmacy said its fine.  The amount that went on the floor was very little.  Can I get a praise God thank you Jesus! 

It is currently 1am.  My baby sister came with me today which always makes this whole thing waaayyy better.  We are bound and determined to not sleep over.  The infusion has finally ended.  We started it at 3pm.  They are asking us to stay for another two hours for observation.  The "team" wants to make sure he doesn't have any further reactions.  The nurse on the day shift noticed his face was slightly swollen.  His lips are a bit swollen as well.  We have had issue with puffiness all week.  I really don't think it is from the Rituxan.  I will humor them and play it safe.  Fine, we will leave at three am. 

Good luck with your infusion Summer!  Praying for you as well! 

Thursday, May 6, 2010

How Rituxan Works

I found this animated video of how Rituxan works.  Interesting:  Play Video

Infusion Today

We are at the hospital today getting our first Rituxan infusion.  We got here at 9:30 this morning.  It was a rough IV start.  Had to get poked twice.  Well, really 5 times not because if you count the J-tip's and the "woops we forgot to get labs" surprise poke : ( .
  Took awhile for them to get everything straight.  It usually does.  I love it when they apologize.  I finally said but kindly said, "oh come on, this is standard procedure."  They had him down to get cytoxan.  Took a good three hours to get all that worked out.  We come back in two weeks for the next dose which will be an overnight.   My Prince sleeps once again, in a cloud of benadryl.

Tuesday, May 4, 2010

Just Waiting

So we are just sitting back waiting to here from the hospital when they want us to come in for Rituxan.  I am guessing it will be Fridayish.  Gary is doing just fine.  His slight inflammation has quieted down and his mood has returned to being more pleasant.  We had labs yesterday.  He got the finger poke.  This time it took hours for it to stop bleeding.  No biggie really, I mean for me.  Well I do have to battle him keeping it wrapped up but he is the one that has to deal with blood.  For a three year old, it can be a big deal.   If you ask Gary to demonstrate his impression of what it is like to get an IV placed, its pretty funny.   He mainly uses motions and facial expressions and sounds.  "Day take it and eeeerrrrrrrruuuuugghhhh", he motions to his hand as if he is holding a large kitchen doing a big stabbing motion.  "Den I doe,   AAAAHHHHHHHHHHHH, and I try (cry),".    I think it is so funny and sad at the same time.   I do think of still having a port or pic line put it but since the weight has come back off, he is an easy poke.  It is a one time poke.  We have not had to try and try again in so long.

Birthday Blog

Our birthday blog is coming up!  So in celebration we ordered what helped get us thru the beginning of this disease.  Yes, I have lost count how many times I have seen it.  It has, however, been awhile.  Gary has moved on to Caillou and other cartoons.  We wore our last copy out.  To be honest I am not sure where it even is now.  So I ordered a brand new copy.  Happy Birthday Blog.    Any excuse for a present, right? We are also approaching our 1 year anniversary of Diagnosis Day.  Yes!  Another excuse for a  present : ).