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April 16, 2009

I am SO FRUSTRATED with the CHOP system!  After we heard back from Dr. Schoffner last Thursday, I made the call to CHOP that we indeed want to move forward with doing the endoscopy and PEG-tube procedures but not the muscle biopsy.  I received a call back from them last Friday morning explaining to me that Lucy’s GI doctor needs to actually put the orders in the system before we can move forward with scheduling.  They told me to call back early in the week if I did not hear back from them. So I called yesterday afternoon to follow up, since I had not heard anything back from them.  I did not receive a call back yesterday afternoon nor this morning so I called back again around noon today to find out where things are at.  My message was stern but polite, “Please call me back TODAY so that I know where we are with things.”  I received a call back this afternoon from the GI nurse who was less than polite or understanding of my frustrations.  She explained to me that because of Lucy’s metabolic issues I need to call her metabolic doctor to have them contact her GI doctor.  What, after almost a week they are just telling me this today?  Why can’t they contact her metabolic doctor and coordinate her admit?  First off, I never get to speak with an actual person the first time I call, I always leave a message for someone to call me back.  So sure I can call, but then they have to call me back, and then I have to call GI and leave a message, and then they have to call me back.  It’s ridiculous and I told them so today!   They all work in the same hospital, can’t they page one another or use the internet?  I know they are capable of corresponding via e-mail, I have seen them do it!  What I forgot to mention to you is that way back on March 23rd(honestly, it was not that long ago) when the decisions were made to do these procedures, we asked her GI doctor to contact her metabolic doctor so that we could all ensure the best possible care for Lucy considering all her circumstances.  Her metabolic geneticists and I spoke twice about the e-mail correspondences they had with Lucy’s GI doctor.  Metabolic explained to me  how they would admit her under their service, and that GI and metabolic were both on the eight floor….you get the idea details have already been discussed between the two specialists.  Last Thursday, I spoke with metabolic to let them know that we are going to have the muscle biopsy done in Atlanta, I felt during that phone call that we were stepping on a few peoples toes by going down to Atlanta, but that’s how these things go.  When you are told your baby is a one a million you’ll do just about anything to get answers!   Sorry I’m rambling, but I’m just so frustrated!  I told the GI nurse that the GI doctor had already been in contact with her metabolic doctor and if there was any way for them to contact one another again that would be more efficient.  She was less than trilled with my suggestion, but said she would talk to the doctor and get back to me.  I asked her if she thought she would be able to get back to me today, to which she replied “probably not”.  Can you feel the love?  After she hung up on me, I called Lucy’s metabolic doctor and left a message explaining the situation.  Guess what, I did not receive a call back today. Aghh,  GI is such a pain the a**!

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