Saturday, August 20, 2011

Goldfish Vomit

No my fish did not throw up on me.  But in attempt to pull out all stops to avoid and IV start, Gary did.  He has come close in the past but this time he went for it.  All the way baby.  lol.  Our IV team wasn't the usual people, in fact, I had never seen them before.  I looked up and didn't even say hi just, "where's Theresa?".  They acted like she didn't exsist.  I got a hint of 'your rude' attitude from them so I backed off immediately.  They lacked knowledge of where everything was so I was having pillow cases throw at me with each heave.  Nothing like cupping your hands together the catch the warm, wonderous contents of your childs stomach.  Good thing this is not a scratch and sniff blog,  cuz BLEH !  I think the IV nurses even got a little woozie.  They got him in one poke but it was a in and out of the same site.  They leave the catheter in but pull back on the needle to try and find the vein. O-and he was eating goldfish crackers before sending back up to my lap, reason for the catchy title.

I love first times for everything.  For the first time I did not bring him a change of clothes.  For the first time he walked out in his underwear.  LOL.   I convinced him since the old underroo's were boxer style, that they were not in fact underwear, but shorts.  Thank goodness it worked.

We have been using lorazapan which is a little pill that makes you feel like you care just a little less.  We have been using it for IV insertion for about six month plus.  Works good.  This time we were in clinic before the infusion center.  Clinic was running a little behind so what do you suppose wore off?  He was especially cooperative for his clinic appointment though.

Our doctor liked what she saw.  Excellent strength.  Skin looks good.  Nail folds still dilated, but looking better.  I have issues with that but I know how to fix it.  Just need to stomp my feet a little.  They have a camera so they can photograph his nails.  Keep a photo diary of what his capillaries look like.  If not, I really might just buy one myself.  Anyway,  she agreed she thought the calcium looked better.  She said the calcium is going to do its own thing and there isn't much we can do about it.  That is confusing to me because I thought the last time they ran Rituxan was because of the calcium.  Maybe that is when you are getting new ones?  Contradiction.  But I am not going to make issue of it.  I think its a if this is happening with disease activity then we can try and stop it.  Shruggs.

Labs looked good.  Have one little elevated level but by only one point so no biggie.  The one thing she told me to keep an eye on was his thumb which was slammed in a truck last month.  The nail has trauma so she wants me to keep a look out for infection.  He also has a spot in his mouth she wanted me to watch.   Infection is a big thing for us or any immune suppressed patient.

Preschool season.......Hmmmmm.  Home school preschool?

Tuesday, August 9, 2011

Enbrel Shot Number 4

Gary takes his 4th shot this week.  Initial review of how its going.  Very well.  I am so excited for clinic next week.  I am not sure if it works that fast but I have noticed the calcium on the backs of his legs have decreased.  He seems to be feeling pretty good.  His skin looks great.  We finally kicked the thrush.  The lanzoprosal we put him on doesn't seem to be helping with the hoarse voice but he couldn't handle the full 10ml.  I am going to work up to it before I officially say its not helping.  The shots are getting better too.  He is one tough guy.  But don't tell him that.  It makes him mad.  I am so happy to be back down to 1ml steroids.  Change in sleep, appetite, tantrums.  Thank goodness.  He is getting so big.  I admit I am cautiously optimistic because Rituxan had this effect of him.  It was like a honeymoon phase.  I even remember posting something about pom poms and I was so excited that this was it, the miracle drug.  It didn't turn out to be it but thats ok.  Maybe enbrel is it.

We had a wonderful weekend at the CURE JM Concert in Hillsboro.