Yeppers!
If I had not been recently exposed to the absolute difficulty in dealing with trying to get information from government offices I would probably be angry. Instead, I find it (sadly) hysterical. We're waiting on paperwork that's been sitting in the wrong place for nearly 2 weeks!
I have no idea what this means for our timing. Hopefully we'll be able to be discharged next week instead of this week...
Just a reminder of how this is happening. Since the request to the FDA is for outpatient use of Omegaven, the NICU doctors are working with the GI Specialists office who is making the request to the FDA. It feels like that game you played as a kid where you whisper a message to the person next to you, down the line and see what the message is when it gets to the last person. No one has complete control or accountability.
I did get the doctors to agree to consider increasing her feeding amount. She's been at 30ml for 2 weeks now and doing well. Dr. R (who was the one who did her last two aggressive increases) is seeing her today!
Ack!! How frustrating!! Good to hear you're taking it in stride tho.
ReplyDeleteGlad that you got it straightened out.
ReplyDeleteso frustrating!
ReplyDeleteglad she's increasing her feeds, though! that's exciting! i asked on CB but does this mean that at some point she can decrease TPN and lipids?
Her Hyperal (sp?) volume decreases when her feeds increase, except... her total fluids volume has increased substantially overall due to her increased size while her oral intake has not changed, so her TPN volume had increased. Make sense? So yes, her TPN volume went down but it had gone up over the last weeks so it's not a significant decrease.
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