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, March 15, 2011

Sick!

Over the weekend, Kara started with some respiratory problems again. We had a full eczema flare and a croupy sounding cough to go with it. By Sunday afternoon we had a low grade fever, thick, nasty nose and a terrible cough. We've been trialing almond milk and I can't help but think it's possibly a building reaction to that but as I start to sneeze more and more, I wonder if she's just "simply" caught a cold.

Yesterday morning we decided to bring her to the doctor. It was a little premature to bring her in, as I often do with her, simply because we know from experience how fast she crashes. It was found that both of Kara's ears are full of fluid again. Not infected, YET, but still, not good. Her lungs sounded ok but she's definitely not doing great. We were instructed to start her on the pulmicort and albuterol right away, three times a day until her symptoms subside. While talking about the fluid, I asked if it was time to talk about seeing the Ear, Nose and Throat doctor. We looked back in her chart and she's had constant fluid at all checks, if they weren't infected, except for the one days before our trip. (I think that one was a total miracle, by the way, to let us go on that much needed vacation!!!) We have an ENT consult in three weeks.

There is a lot more to think about with Kara getting tubes put in than there is with a "normal" child. It's a procedure that we are not going to take lightly. We aren't sure if the procedure will be able to be done at our hospital or if we'll have to travel to have it done because of the reaction Kara had when she had her EGD done at the U of M. At our consult, we'll talk with the ENT and if he decides tubes are now needed (that the benefits will outweigh the risks of the procedure) we'll need to have a consult with the anesthesiologist. I was told that normally, it's a quick and easy procedure - the child doesn't usually even have an IV placed. In Kara's case, she WILL have the IV, just in case. The anesthesiologist will have to be the one to do the procedure, not a nurse anesthetist, and she'll have to be watched extremely carefully after the procedure because of the tachycardia that she went into with the scopes. It's a lot to think about!

We didn't leave the doctor with any prescriptions this time, we already had the pulmicort and albuterol but if Kara doesn't turn the corner pretty quick (like by tomorrow!) we'll be bringing her back in to have an ear re-check and/or check for pneumonia. We are doing the nebs as prescribed but last night we even had to get up and neb her in the middle of the night because she was struggling so bad to get a breath with all the coughing she was doing. Poor baby.

So, I stayed home yesterday, Brian took the shift today and tomorrow is up in the air. Kara's wandering around the house between coughing fits and we are hoping for a healthy, happy girl to be able to go to daycare tomorrow.

2 comments:

  1. Oh no :( I hope Kara is feeling better very soon!

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  2. :( praying. Keep us posted. SO SORRY Kendall. UGH FPIES SUCKS!

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