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.

Saturday, July 30, 2011

The Last Few Days

Kara's tummy aches have seemed to be getting worse and worse lately. We can't seem to get a handle on anything and with her being able to somewhat express where her pain is now it makes it that much more heartbreaking. On Thursday morning, I was able to go to work early but unfortunately, had the girls' "babies" in my car so Brian had to make a pit stop at work to get them to avoid a more serious meltdown than what was already occurring.

I had left before Kara was awake, so I made sure to open her door of the truck to give her a hug and a kiss before she went to daycare. I remember thinking she looked puffy and commented that she had really icky breath. Huh. They went on their way.

Brian picked up the girls from daycare as well, I was home mowing the lawn at that time. I had finished and pulled up into the driveway and Kara held her hands up. Thinking she wanted to ride, I picked her up to tell her that we were all done. I thought she felt pretty warm, but it's hot and muggy, so that must be all because she'd been fine all day, there was no report from daycare. Shortly after, I had my hand around her chest holding on to her and noticed that her heart was racing and she was sort of grunting with every exhale. I told Brian "she's sick!" and he'd said she was a little fussy on the way home but there was no report of anything being wrong. We went in the house and took her temp and it was 102. I called daycare and was told she was fine - she ate like a horse, took a good nap, and after nap was outside playing with the kids. No indication that anything was wrong. I explained that she crashes really fast when something happens so not to worry. Kara continued to burn up,and not too long after, her temp was 104.2. I gave her some tylenol and she laid on me, then not wanting me to even touch her. The tylenol took her temp back down to 102 but soon after it was right back up to 104.

Around 8, I think, I made the decision to bring her to the ER when she wasn't really responding to much and was back to the groaning with her breathing. She was in tachycardia again, which is normal because of the fever - her pulse was 202! My poor baby. I explained to one of the nurses how complex her care is and that I needed the doctor to listen to me and please not brush this off as a virus or some sort of gastroenteritis because of her complex medical history. We gave a very thorough history and soon the doctor was in. He checked her over and everything looked fine - throat good, ears clear, no clear reason for what was going on. IV fluids were ordered as well as some lab work. Labs came back decent, but she had a high white blood cell count. He then thought we should get a urine sample which came back fine too. Next she had to have blood cultures done and IV Rocephin started because of the infection.

We were able to home shortly after 1:00 a.m. with the understanding that if she still had her fever in the morning we needed to bring her back in and talk about a possible transfer to the U since there is no pediatrician or specialty doctors at our small town facility. I took Kara home hoping and praying that we'd see a great improvement the next morning due to the fluids and meds she was given.

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