We finally broke our bad cycle of IVIG luck!  The past three months, Shelbie has ended up in the ER multiple times after her infusion.  This time, with a little encouragement from our new Case Manager, I was able to be a little more assertive and insist that we do things my way.

That probably sounds rude and condescending but it's been a real circus the past few transfusions.  Our doctor writes orders but doesn't specify an infusion rate.  He asks that it is infused slowly but that's open to interpretation. When the hospital Pharmacy brings down the plasma, they tell the nurses to infuse it at a specific rate.  Then I usually, politely ask that it is another rate altogether.  Well, the Pharmacist seems to trump my opinion and the doctor's and it ends up going too fast and she suffers with way too many side effects.

This time, I let them know just how many times we have been in the ER and I really wanted to take things slow.  I acknowledged the fact that the pharmacist thinks it should be one way but in reality, as long as the plasma is infused before 24 hours is up, it's fine.  I pretty much begged them to keep it at 40 ml. per hour.  They agreed they would try it.  They did sneak it up to 55 but when she came in to bump it up again, I just asked that we leave it where it was at.  The whole infusion went better too, no reactions.  Maybe it was just a fluke but she has really been blessed.

We are 36 hours past the infusion and not even a glimmer of a headache.   I can't imagine, even if she gets one that it will be so bad we need to go to the ER.  So grateful!  We really needed a bit of a break from this.

I am still so worried about Sam's toe.  It is sort of starting to consume my thoughts.  It doesn't seem like it is getting any better.  He will be at his dad's this weekend so I'm hoping he keeps me up to date with pictures so I can compare and make sure it isn't spreading farther up his foot.  Avoiding IV antibiotics would be a real treat!



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