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.

Monday, August 2, 2010

Bad Day!

Today was a bad day. There's no other way to sum things up. Kara has continued to have nasty diapers despite the increase in her forbidden foods. Yesterday we struggled and last night she was inconsolable - she'd lay in arms and scream, I'd put her on the floor, she'd scream, it was just down right awful. Luckily we finally got her to bed shortly before ten and she slept until about 2:30 when she got up for a quick bottle. Have I ever mentioned that I feel like I still have a newborn sometimes? :)

I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.

I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.

I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.

Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.

What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.

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