Friday, December 10, 2010

Christmas is almost here?

Ring Bearer at Aunt Amy's wedding. 
Wow time is marching.  We had our clinic appointment last Tuesday  and our IVIG infusion the next day.  The clinic appointment went fine.  We are keeping all medicines and doses the same for awhile.  I would describe it as a holding pattern right now.  Just waiting to see what happens.  The doctors and I agree.  Not good enough to stop steroids.  The inflammation is just there still.  Despite really great labs, I can't confidently say were good to go down.  The infusion was a little rough.  This time we tried new things.  We tried a little sedation for the ride in and for getting the IV.  Several reasons this was no good.  He couldn't walk into the infusion center on his own.  He fell of the scale when being weighed.  It did help with the IV start, but he still cried, just cared less.  As soon as they ran the benadryl thru his IV, he was furstrated.  It hit is balance hard.  He was out of it and could not stand up on his own.  It was too much.  Feeling icky and sick like that was not what I had in mind to make the IV go easier.  The next 3 days proved to be difficult as well.  That night he cried and cried and cried.  He was in complete misery over everything.  Uggghhh.  Forget it.  No medicating for IV's.  We will just have to find other means to cope.

The other new thing we tried was the infusion center.  We were booked into a new infusion center which was off campus of Children's Hospital.  We only had to go to Bellevue.  I liked that is was closer, quieter, and new.  I didn't like they didn't serve lunch.  It didn't hit me until we pulled up.  I am more than happy to pack a lunch for next time however.  It was also nice because we had the place to ourselves which meant we almost got the nurses full attention.  They were great.  One of them sat with Gary while I went to get him food for lunch.  They had a movie on demand system which was good, but once we got thru all the movies, he got restless.  Of course he fell asleep at the end.  For the first time in a year and half, after countless infusion, Gary did not wake up while having his IV removed.  Sedation gripped him hard.

Last month I had asked for them to check his B cell count, to see if those cells responsible for inflammation were coming back yet.  If they were, then Rituxan would be given again.  They had explained it was still to early.  I told them I wanted them checked because there was a overall inflammation I keep noticing in his hands, face, and skin.  They went ahead a checked them this month.  They are indeed back.  So in a few weeks we will be getting another round of mice medicine.  (I call it that because Rituxan has mice dna stuff in it. I know gack) .

Last year we made it thru the flu season with flying colors.  Nothing.  Gary did not really catch anything.  This year is proving to be different.  I wonder if it is because I am becoming a little more relaxed with his exposure or what.   Nov. 13 he threw up and was sick.  Recovered quickly.  3 days later another round of throwing up hit him.  He once again, recovered quickly.   Dec. 9th (Last night), he began throwing up again with tummy cramps.  That makes a three peat.  Hmmm.  I did have a little run of it a few days after he did last month so I was sure it was a tummy bug.  But 3 times now for him.  The good news is he seems to recover quickly.  Both times he has held down his important medicines so no hospital visits.  I knew yesterday something was up.  He was quiet and complained of a headache.  He did the same thing last month as well.  I few days before, I knew something was wrong or brewing because of his behavior.  Poor little boo boo.

1 comment:

  1. Ericka,
    I am so sorry I haven't commented right away please know I pray think and talk about little Gary often and he is my inspiration as are you friend! I am going through so much with DM right now it is hard to blog! I am glad Gary is started to even out on his meds, wow he sounds so much like me with DM even if some of my BW shows good it is never great enough to pull off steroids because I flare to bad when they do! Has Gary's liver ever gone really high from meds? Mine is 3 x the norm and they are having to pull me off some meds to see if they are the cause and then if nothing they will have to do a liver biopsy I sure hope not! I agree infusion center is great the only part is food but my mom always stays while Greg buys us a bite LOL

    Sorry to hear Gary' had the sickies, and wow it sounds like they sure did sedate him huh.....sedation meds always make me sick too

    Love the christmas background and snow