Ears

Earlier this week, I brought Kara back to the doctor. Her cough is gone for the most part, but she has still been really irritable, not sleeping well, and I thought that warranted a return for an ear check. Both of her ears are still full of fluid.

We discussed this fluid problem. In a "typical" child, it was explained that they'd let this go about three months before a referral to an Ear, Nose and Throat specialist. We all know that Kara is far from "typical", even more so as the Cardiologist explained how sensitive it seems her entire body is, after reviewing her history. Basically, we have a lot more than just GI problems going on with Kara. Kara's doctor wants to see her back in 3-4 weeks and it was decided that if she still has the fluid at that point we'll be referred to the ENT. We really don't want to risk anymore ear infections and she's high risk for them with the ears being so full of fluid. If her irritability increases or she spikes a fever again, back in we go.

Ear tubes are not a big deal, a no problem, in and out procedure for "typical" children, so why we are jumping the gun and worrying about this for Kara, when really, it could help her out immensely? In October, when Kara had her EGD done, she had a terrible reaction to what we think was from the Fentanyl that they gave her but we really have no idea. She ended up in tachycardia for 24 hours afterwards and had some horrible swelling in her feet and legs. It was the scariest thing I've ever gone through in my life, watching her so sick! For now, we are praying that these ears clear up but keeping our options open, trying to weigh them out.

I wasn't sure if I was going to blog about all of this or not, since it's not necessarily FPIES related, but then decided, maybe it is - FPIES babes are definitely non-typical so even though it affects their GI system so bad, it really affects so much more than that. It seems every few days, we are finding out different connections on how our babies have so much more in common than one would think!