Wednesday, September 29, 2010

Infusion # ? Lost Count long time ago

Things went smoothly yesterday.  A Child Life Specialist met us in the infusion center to help with Gary getting the IV.  Gary had the usual same amount of anxiety.  It has been mounting in intensity however.  This time, Gary tried to get himself to "throw up" during the IV start.  He looked very red.  It's like he is working on turning himself inside out.  They missed the vein the first time.  But a nurse that has done countless IV starts on him came to the rescue and put that needle in a gusher.  The Child Life Specialist helped with Gary's anxiety prior to the procedure.  She distracted him with giving a Teddy Bear an IV.  We have done that before but I didn't mind return to old trix.  Making the actual procedure go without tears, fears, and anxiety is just impossible.  I don't think at this point it will come without tears.  She told me its a natural reaction. I completely understand that.  It is not completely natural or normal for him to have a disease that requires this treatment.  Sitting in the infusion clinic all day, I get to hear the "natural reactions" to different procedures.  Getting around them is just impossible.  Trying to make it easier is what I am after.  Since I am seeking, than I shall find?
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We are waiting to hear if Gary is therapeutic with the dose his new medicine he started.  His levels as far as JDM are still holding.  He still has a elevated AST level of 51.  Calcinosis, still there but staying put.  I try not to sit hear and hold my breathe waiting for the next flare.  I'd rather go running.   Run those feeling out.  


  1. Just thinking about you...I remember Sami having countless I.Vs and feeling the same way you do now. Remember sticking my face right up to hers and saying"Blow,blow,blow",while she was being stuck. She just liked knowing I was right there an inch away. Not sure why it helped but it did. Still hated every minute of every time any needle came near her. Hang in there MaMa, this to shall pass. Admire you so much,and glad running is also an outlet for you. ((hugs)) Kelle'

  2. Gurl your an amazing mommy to little Gary! It stinks to have an IV even for a grown up, I will be getting the Rituxan Infusions as soon as the medical assistance co-pay grant goes through so it will be in a couple weeks and I can't stand IV's and I am 32 and I will probably kick and scream so I don't blame little Gary for doing it! It is odd when you here this is normal and your thinking um well it surely isn't normal for us to be going through all this with DMand having DM but I guess this is our normal but it still gets irritating hearing it I do agree! I am glad his levels are holding and coming down a bit! I pray they resume to normal soon! While you are running will you run some of my frustrations out for me as well? LOL I wish I could run myself but it's just not a happening....

    love you

    Oh I talked to JHU about the massive bruise, I to freaked about it and the Hubs hit a blood vessel and where I am on so much blood thinner it kinda spread like crazy, it hurts like I don't know what, they are monitioring it, so far so good, but if it starts spreading more, or changing shapes then they will have to evaluate it again, thanks for always being concerned for me and being there for me as well


  3. Oh Erika! How I don't miss those days. But I am praying for you guys daily. My girls always ask about Gary and how he is doing. It will eventually get a little easier. Kya was just starting to get better and now look!!! LOL A little late on that. So glad that you have running as an outlet. I had eating, therefore I am now having to walk my tail off and not eat! LOL (Notice I said walk and not run. I will leave running to you!!!)

    Just remember we are still here for you and praying and thinking of you daily. How are the playground project permits coming along? Keep me informed! Hang in there Mama Tiger!!!