Thursday, April 21, 2011

Infusion: Really need to look back and get the count on what number it is

Aprils infusion is down in the books.  I think that Children's secretly has kryptonite under their hospital.  It sucks mom's energy out.  Gary did well yesterday.  I decided to skip over the numbing cream for the IV start this time.  The numbing cream sometimes irritates him more than its worth.  We opted for a J-Tip start which is a numbing shot first then the IV.  We have been grateful, let me re-phrase that, Gary has been grateful I am sure to have the nurses getting those veins on the first try.  I know I am grateful because I hate see him going through it.  I liked my nurse.  She took the time to ask about Gary and how he was doing.  I just so appreciate that.  It's not a matter of I care if she cares, but its a matter of I know she can give better care if she is informed.  We got into a little conversation about keeping the blood pressure cup on, but no biggie.  I just need to make sure I communicate.  I told it her not one nurse as ever insisted he keep it on.  We have to keep him level, especially with steroids pumping in him.  She was kind about it, but you can't win with me.  I still will get irritated.  Gary turned his usual death white.  He complained a lot on the way home of needing throw up and having a head ache.  But as soon as we pulled in the drive way, he saw his Uncle Bill, his play set, and all was well in the world.  Then the steroid monster emerged.  Everyone bunker down.  He's here!  Gary's labs are holding steady. That's good.   It's not great because I have noticed changes in strength like stairs and pulling himself up into his car seat.  It has come with more effort and more sound.  Grunting and more effort.  Our clinic is next week.  I will get a chance to speak with our doctor about the orthopedic doctors report about his crossing toe's.  Sum it up, "I don't know" he said.  Even the nurse told me she got in there and read his report to our rheumatologist.  She came back and giggled.  She told me that is just what he said, "I don't know, all's we can do it watch it."   He wasn't sure if it is from JDM or what.  My favorite! The unknown and waiting!   Builds character right?   Gary is still continuing to have nail fold capillary changes.  When you can see if without magnification, that says something. We are still recovering from our Make A Wish weekend.  Still floating.   Now onto Easter?  Wait, not ready.  I need a vacation and money for it.  *Giggles*

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