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, January 10, 2011

Cough, Cough!

Last Thursday I thought for sure we were headed down the road of Kara needing to be admitted for fluids again. She was so, so sick. She laid on us and cried, we fought her changing her diaper every 10-15 minutes. Thank goodness we didn't give her anymore of the Augmentin. Thursday evening she started perking up a little bit and by Friday she seemed a lot better.

At her appointment on Friday she was still really ornery, irritable and looked sick but a lot better than the day before. Both of her ears are still pretty red, and she's really "junky" sounding. We have had to up her nebs to three times a day, adding Pulmicort to the mix now. I was instructed that from now on, at the first sign of  cold, to start this cocktail. If she doesn't show good improvement from this, we'll have to discuss putting her on Prednizone. If she spikes any fever at all again, we have to bring her back in as well. Poor baby.

Today she is doing much better but still has the really icky cough. I keep hoping for some major improvement in her airway and hoping we don't have to go the route of any more meds. She has an ear check in three weeks so hopefully we won't have to go in until then! As if this FPIES stuff isn't hard enough to deal with, we have the airway and ear stuff coming up now. Ugh. It's a never-ending battle!

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