Does a good doctor mean the staff is compromised? Does good staff mean the doctor is compromised? When we were seen at MN Gastro last January the staff was very nice and helpful. The doctor, however was not. It seems the opposite now with the staff at the U that I've had to deal with. I just want a team to work together to get Kara figured out.
I've been waiting over a week for a call back from the nurse at the U with some information for us. We have played phone tag a few times but I've specifically left my work and cell number with her. I got to work this morning and there was a message on my voicemail from her which made me instantly irritated - my work voicemail specifically states that I'm not in the office on Fridays. I left a disgusted message this morning stating these labs were done on the 6th, that she told me she was going to try and get us in last week or this week, that I'm still holding out for answers, and once again, that I'd be available at work til 3:30 and after that, by cell, leaving both numbers again. I also called quite a few times throughout the day just to see if she'd answer. I left work with no phone call, and didn't receive one tonight either.
I don't know what to do regarding Kara's medical care. I feel like I am aimlessly wandering these halls of FPIES and doing it with no help from the medical profession. The doctors offer suggestions and then say "come back in a month" or "come back in three months." I feel like it's a damn good thing I have the common (and sometimes not so common) sense, family in the medical field, time to do hours of research on FPIES, and have Mommy sources who've been there done that. Without this, who knows where Kara would be right now because I can't seem to get any help from the professionals that should be helping us out. It just seems that there should be more out there than what I am getting. I don't know what I am looking for - maybe lab results back the next day, or perhaps even in the same week, from a simple lab that takes a minute to process? An answer in a day or so when I call and tell the nurse that my baby's dirty diapers are breaking her skin open wide almost immediately after going and I don't know what else I can do beside cry right there with her. That maybe we should quit screwing around and do the scope already so we can see what her insides look like. I don't feel like these requests are too much, so why can I not get any replies to any of this? I'm so frustrated once again.
Right now we are in a pretty good place with Kara but her only safe foods at this point are her Neocate and corn product with the exception of the bananas that we are trialing right now. My baby is 15 months old - we should be a lot further than this, or have at least been able rule out more foods than we have.
I wish there was someone in this state, or even area that has had luck with a facility and dealing with FPIES because Kara, and others are struggling.