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Posted

My DD11 was supposed to have IVIG today, if Dr. B's office could get it approved, so we stayed overnight - had a to go to a different hotel than the one we told them, but no calls on my cell yet. She just had another episode. I called the Darien number and was told they are not open until 2 pm... that the infusion center is open, but they don't have a phone in there. ???

 

Can anyone tell me how to reach them to find out if and when we are supposed to be there for IVIG? Thank you!!!!

Posted

I called the answering service back and asked them to have him call me.... we'll see if that gets me anywhere...

Posted

Louise just called - she's approved! Yayyy!!!! :) :) :) We're getting checked out of hotel room & heading over to the infusion center! I'm going to get my daughter back!!!!! :D

Posted

Infusion went fine; they gave her 1.5g/kg, so a total of 45 grams Gammugard. We're due back in 4 weeks for another... I am completely exhausted, but just so relieved that she finally has a treatment plan! :)

Posted

It truly was our pleasure hanging out with your sons; we enjoyed them! Praying things improve for all of you soon! ♥

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