Wednesday, December 22, 2010

Good news/ Horrible appointment (Very long)

Today was a roller coaster of a day.  We had a noon appointment at Emily's rheumatologist to have her Remicade and Solumedrol, as well as to see the doctor.  Off we went on what was apparently a bad traffic day.  I hadn't thought about traffic since my children are all still in school this week.  Wednesday is the last day of classes before the holiday break.  On the way up we got stuck in traffic on the interstate.  It's a bad sign when you're only doing 10MPH on the interstate and you can't see where it starts.  We actually got through it fairly quickly.  We even got to our appointment a little early.

One of the things that no one stops to consider about steroid use until it happens to someone you love is that, with all of the steroid swelling (Cushing's Syndrome) the veins are harder to find.  As with last months vein blow out, we had even more issues today.  The veins are hidden by the swelling, some so deep that they can't reach them with the needle.  Others were rolling, and 2 they thought had scar tissue already.  She got poked 5 times before they gave up.  We decided to call today a loss and try again in 2 weeks.  To be safe, we gave her  a booster injection of Humira because it will last 2 weeks.  I was worried when they said that because I have heard the stories of how badly Humira burns.  Apparently, when mixed with Lidocaine after 5 big pokes (drawing the catheter in and out trying to get the sweet spot) it doesn't burn as badly as it probably would have at home.  I was really worried when they suggested it.  I begged for Enbrel, partially because I have a full box in my fridge still.  I didn't think they'd agree; part of the reason for the Remicade is because we thought the Enbrel was failing after over 2 years on it.)  We were still there just as long as we would have been with an infusion, so she got to watch "Dispicable Me".  She was happy about that, but it was little consolation. Today's appointment was fairly informal, actually.  For a while we just chilled out with the nurse practitioner, then one of the doctors joined the roundtable.  It was good to just chat about stuff.

We did have some good news from the appointment!  For one, after talking to Em and asking her what she thinks about her Raynaud's, I asked if we could try something for it.  I had thought that it had kind of gone away, but it has been bugging and worrying her, so they gave us a prescription for that.  It is a duel purpose medicine- it also works to lower blood pressure, and hers has been high from the steroids.  Maybe that will help her to feel better, I hope.  Without even seeing an episode they said that her Raynaud's is obvious to them.  Even though I should be used to that, it hurts because it's sad that something so crappy has marked her.  I'm hoping that this will help make it less obvious, among other things.  Also, we are continuing to decrease the Prednisone by 3MGs a week!  This week we go from 10MLs to 9MLs, with next week going to 8MLs.  The hope is that we can get some of the Cushings water weight off of her.  We all agreed that currently, her biggest problem getting up seems to be the big ol' tummy in the way.  Since everywhere is swollen her whole body is out of whack.  That makes it harder to do just about everything.  However, her puffy tummy being the problem is way better than her muscles being the problem.  Today the issues seemed to be more joint related, with the elbow, knee and spine kicking in.  They seemed a bit relieved with this, and decided that it was a bit of a blessing that we couldn't do her IV's because they will be increasing her Remicade.  Secretly, I was happy because she would also have had Solumedrol today which I love... but it would add more puffiness to her again, and she's finally starting to lose some.  (Yes, I rejoiced inside of my head).  The doctor asked her to show us if she could do squats, sit down criss-cross-applesauce, and get back up herself, at which point she burst into tears.  I swear, her crying just makes me want to cry.  I feel so spent by the end of these appointments.  She hates going there.  I think she thinks it's the staff that has an issue with her veins, not her body being the problem.  I think she thinks it wouldn't happen at our old hospital, but I'm equally sure that at this point it would.  Anyway, when it was time to go we were both exhausted, but I had a little gift for the nurses at the unit she had stayed in during October.  We had all of the soda can tabs that people had collected and given to us.  I had a milk jug filled with them and several smaller plastic bags.  Our Cub Scout pack and some of the school staff that is in our pack had contributed a LOT.   I wish that I had a camera to take a picture of the face of the nurse that I gave them to!  She just lit up!  It was wonderful to watch.

On our way home traffic was thick, and as we were almost home an accident happened right behind us.  The funny thing is that I knew it was going to happen, but I don't think that either involved party did.  Still, seeing 2 accidents in one day had me feeling paranoid.  Maybe it's because (I'm pretty sure) I'm sick.  I dunno, but I was really feeling uneasy.  We popped by our Cub Scout Christmas party to say hi, though I kept a distance.  I'm fairly certain that I'm not contagious, no fever or anything, but just in case I didn't want to take any chances.  We still had a nice time.  She tries so hard to enjoy herself, but she doesn't seem to really know what to do right now.  She'll get it.  I know.  Her doctor said that the first 6 months of steroids is the hardest for these kids.

Finally, as we were getting the kids ready for bed (and it was late for them) we had a knock at the door.  We were a bit surprised- it was already 9:30.  Fully expecting bad news, we got quite the opposite.  I believe that I have expressed before that I don't need "stuff".  I'm pretty happy having a cohesive family unit.  Some people want stuff to help fill a void.  I don't have that void, and I'm pretty simple and easy to please.  However, I am very emotional (HATE that!!!) and very empathetic.  "Santa" knocked on our door.  We aren't sure who, though we have an idea, but someone blessed us beyond belief.  I can honestly say that I've never had anything like this happen to me/ us.  It was so amazing, and really it couldn't have happened on a better day for me.  To me, our lives are pretty normal, Emily excluded.  I guess when you have a crazy life, crazy is your reality.  When everyone else thinks that you're crazy, you're puzzled because to you it's normal.  That's how I feel.  I'm so used to dealing with things, taking care of everything, and getting hit with things that I'm just used to it.  Apparently, it's not normal, and someone else took notice from someone.  Probably from Emily.  That girl has endured so much this year.  It has NOT been a good year for her.  Now we can spoil her a bit more, and her siblings as well.  I know that it's been hard on them, too.  It's just so hard to believe how blessed we were tonight!  We both just keep saying "wow!" and shaking our heads in disbelief!  Omgosh, I had to keep myself in check because the kids were still up and all that I wanted to do was just cry.  How beautiful the gesture!  Indeed, we are blessed.  So, if our Secret Santa is reading, thank you so much for touching our hearts, for helping us to remember that we are not alone out there, that God is looking out for us and working through others to touch our hearts when we need it.  No one could ask for more of a Christmas spirit than that.  Thank you!  And to the rest, Merry Christmas, Happy Hannakah, Happy Kwanza, or whatever else you practice.  I hope that everyone has wonderful holidays!

1 comment:

  1. Hi, My daughter was diagnosed with JRA the week before Thanksgiving of this year, and to be honest I had heard of it, but knew nothing about it. No one I know knows anything about it…yesterday I started a blog for my daughter and I found numerous blogs about kids with JRA and I’ve slowly been reading them and it has been so helpful to read some of this. I came across your blog today; first off my heart goes out to Emily, I just read your most recent post and I’m so happy for Emily’s turn around the past few days, that’s awesome!

    I was reading your post “Emily’s Story-Why I blog” and you had mentioned if anyone had any JRA questions to ask. I read in that where you had said “She has poly-arthritis, which is 5 or more joints involved. Most poly children do not test positive for ANA, which stands for Anti Nuclear Antibody.” Bevin, my daughter, had Poly as well, currently both hips, both knees and her left ankle are affected…possibly more, but she’s 1, so the doctor is not able to fully tell every joint as she can’t specifically tell him, and we think its been going on for some time so she may be use to the pain where it’s not really pain to her anymore…anyway, Bevin also tested positive on her ANA (negative on her RF thou) and I don’t really know a lot about it or what a high titer is…Her ANA Pattern 1 (ANA PATTERN, SER, IF) was “4+HOMO” and her ANA, TITER, IF was “>=320” and her DNA ANTIBODY (DOUBLE-STRANDED) CRITHIDIA, IFA was Negative…I only understand what the negative and positive mean…you seemed to know a lot about the ANA and I was hoping you could pass some of that info on, or point me in the direction of where I can look.

    Bevin’s pediatrician is awesome, but I’m not super thrilled with her Rheumatologist, we’ve only seen him once and will see him one more time before he retires next month, then we will see his replacement…I kind of feel like he’s already checked out of the job…so I’m kind of trying to find out everything I can prior to the replacement coming in so I can have all my questions prepared.