its been too long since our last update.
Wednesday was ERT infusion #3 at Shands.
Unfotunately, we only clipped our original time by about 30 minutes. It seems that despite our attempt to speed up our day at Shands, the people in the Pharmacy department suceeded in slowing us down a lot. That poses a problem with the enzyme. To put it simply, once the enzyme is mixed, it is supposed to be delivered immediately in a 4 hour time frame. Well, it takes precisely 4 hours to infuse it into her once we start the drip. The Pharmacy department did not get the stuff to us until an hour after it was mixed. Not cool.
Out fabulous nurse Kathy (who Gracie has taken a liking to as well :) ) has promised to rectify this situation for our future visits... she has made it her mission, even if that means that she must go to Pharmacy and pick it up herself. Thanks Kathy.
Other than that, it was a good day. Gracie did well and enjoyed some snoozing and playing and watching cartoons and trashy talk shows throughout the day. No reactions so far and her skin is still a little itchy under the bandage, but we're learning to live with that.
So far so good and still on track for our return to Minnesota on April 14th for work-up.
More later, I promise.
Thanks for reading.
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5 comments:
Wow, I hope you are raising heck with that pharmacy. It is so frustrating when people's carelessness makes your life so much harder. (Or at least keeps it from being 'easy') Praying everything continues to go well for Gracie... We went up for work-up April 9th last year...
Did you get to meet Chance at RMH when you went up? Just found his cb site (chancers) via another friend. He should be just out of the hospial and back into RMH when you get there for work-up.
Have a good weekend...
Kindall
why is it that I think MOMMY liked the trashy talk shows rather than Gracie? Good to hear it went well even if I have to drive there and bust some slow pharmacy ass next time.
You have a gem of a nurse! I know she will get it all worked out for you.
Hi ~ I heard a tip from our wonderful Oncology nurse... If the tegaderm is causing skin irritation, Glad Press 'N Seal plastic wrap will work as a tegaderm without causing the skin irritation. I have not tried it yet, but thought it was worth mentioning to you! I am happy to hear that Gracie is doing well with her infusions!
Love,
Jennifer Restemayer
(mom to Allison)
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