Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Tuesday, November 30, 2010

Change In Plans

Today was supposed to be the long-awaited cardiology appointment. Last night we got hit hard with a blizzard and after getting up early, watching weather reports, radar, and different conversations, I was finally convinced that we weren't going to make it. I want piece of mind of this possible heart problem so bad! I've contained my anxiousness by putting it in the back of my mind, taking things one day at a time and today was supposed to be the day that those thoughts were put to rest!

I called The Heart Center on my way to work to cancel and have the gal call me back to reshedule, hopeful that maybe an afternoon appointment would open up and we could make the drive a little later. This appointment took over a month to get! Once I got to work, I spoke with her and our newly scheduled date was January 4th. I couldn't wait that long! I asked her what other clinics she goes to - maybe we could get in there, and she is actually through the U of M so she gave me a few different phone numbers to call. I called the U, they could possibly get us in on Dec. 20th...a little better but I was told she's only at that clinic once a month. UGH! Why does this always have to be so complicated?!

I finally found out her main clinic and called the St. Paul Children's Specialty Center. I explained our situation and since they are part of the U as well, she was able to pull all the records up from our visit. She took started verifying all of our info - basic, then started going in to insurance and I got hopeful! At the end she said "ok, we'll just need the holter report sent to us, we've got everything else. Can you make it on Monday at 10:45?" YES! It was THAT easy? What the heck was I doing waiting on St. Cloud for 6 weeks and thinking about waiting on the U for 3 weeks?

THIS is why I take matters into my own hands on all these appointments. Closer isn't always better. St. Cloud is an easier drive and probably 30 minutes closer, but really, what's 30 minutes when you already have to take a day off work and travel? Not much to me!

I saw a fellow FPIES Mommy's facebook post today - it said INSURANCE AND DOCTORS = FULL TIME JOB. Amen. This is just another example of how complicated this life can be!

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