Pandasmom's Blog

living with PANDAS, not the furry ones…

Hurry up and wait October 21, 2009

Filed under: Uncategorized — pandasmom @ 12:17 am

I feel like if our life were a movie it would be “Meet the Parents” only it wouldn’t be funny.  It would just be that ridiculous and stressful to watch.  A woke up at 3:30 am this morning and wasn’t able to fall asleep again until 6 am.  Then Addison was up at 6:30 and so was I.  At 6:35, I called Dr. L’s office since they are on EST and was informed that they did indeed make an appointment for us with the ICU docs for next Monday.  However, we might not be able to keep it.  The family that was scheduled for next week had originally chosen IVIG for their child which is why we were able to do PEX.  But late Friday they were considering switching to PEX.  If they chose PEX, we would get bumped.  A lot of thoughts entered my mind at this point but the main one was “Was anyone planning to call us and tell us that we might not be able to do PEX next week?”

A is a complete mess and I don’t know how we can wait any amount of time to help her, let alone until the next available slot in the schedule which is Thanksgiving.  The steroids that she is on have done absolutely nothing to help her.  We are on day 6 of a one month prescription.  Last time we did steroids it was only for 5 days total and A improved immediately.  I am perplexed as to why they are not helping her this time.  When I heard we might get bumped I immediately called our ped to see what her thoughts were.  This morning I thought she was thinking that we would need to go to our local hospital pretty quickly for an IVIG for A.  That is what got me through the morning.  But when I called to update them our ped asked me to call back tomorrow when we know for sure.  Of course this sounds pretty reasonable but Dr. L’s office told me at noon that we were 99% certain to be bumped.  So no we have a child who is in a crisis situation and has no real help scheduled. 

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