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.

Wednesday, June 8, 2011

The Week

This week has been trying. I'm not quite sure how else to put it! One minute at a time is about all the faster we can go!

Monday Kara and I hopped in the car for our 2 1/2 hour drive to Minneapolis. We were meeting with her ENT before the surgery to discuss what all was going to be done, what extra precautions were going to be taken, the whole works. It started out with Kara having fluid in both ears - but not infected, yet! We went over her sleep study - definately has obstructive sleep apnea and the tonsils really should come out. We went over the risks and benefits of the procedure and it was decided to have the tonsillectomy done at the same time. After going through information with the doctor, we got other things taken care of with the nursing staff and Child Life. I THINK we are ready. They reminded me to just keep drilling "it" - meaning Kara's previous reaction - into their heads. Every one of them that comes into the room the day of her surgery. It can only help to have everyone that much on board with what can potentially happen.

Tuesday morning I woke up two very tired little girls and drug them out of the house to daycare. It was a terrible, terrible morning. We were all so tired and I was running late so pretty much just dropped them off and left. I was making a mental list in my head of foods for Kara to eat after her procedure throughout the day and decided that I was going to run into town after work to pick some things up, get a book or two to read and maybe something new as a distraction for Kara in the next few days. I had to stop at home quick and my girls were both still so crabby! Brenna was terrible, whining, crying, I left Brian with the girls and was on my way as that was my only night to get things done.

I got home from Walmart and had picked up a pizza on my way home. I got home to find neither of my girls feeling the best. Brenna was laying on the couch, curled up in a ball and they both had temps. Bren didn't touch her pizza, didn't even budge from the couch. Her tummy hurt. The night went on as she whimpered on the couch and her temp continued to rise. She had mid belly pain but no vomitting, diarrhea, constipation, so I really started worrying that it could possibly be her appendix. We got Kara put to bed for hte night and Brenna was sleeping so we just figured we'd keep a close eye on her. At 11:00 she was moaning in pain and her temp climbed to 103 so we brought her to the ER. Three and a half hours later and many, many tests run, we ruled out appendicitis. She has a bad UTI and some other things going on so we took her home on two antibiotics. I found myself snuggling her in the ER wondering if it was going to be possible to get her into surgery, recover and home from the hospital before I had to leave with Kara Thursday evening. Thank GOD it didn't amount to that! We're watching her close but she's much, much better today.

I got up with Kara this morning to get her ready for Brian to bring her to daycare, hoping Brenna and I could get some sleep. I had told Brian she was ready and then stopped to take her temp, thinking she still felt warm. Sure enough, she was over 100 degrees. Great. We have surgery scheduled (and it took a LONG time to schedule!!!) for 48 hours from now. I called the clinic as soon as they opened and got her in right away this morning. She's got a nasty nose, red ears full of fluid and an icky looking throat. She also has some nasty looking blisters on her bottom (have I mentioned how far from baseline she is lately?) and the doctor was pretty concerned at the look of those as well. She is now on amoxicillin again, due to me refusing anything else this close to surgery as well as a prescription antibiotic ointment again. The doctor explained (it wasn't our usual doctor) how she wanted her on a different antibiotic and wanted to give her sulfa. She had a totally valid point and I would have agreed, had we not been two days from surgery. I explained how we have to trial everything, how our GI doctor says no more trials for a few months and to me it wasn't worth the risk. She agreed with me and we started amox again today. I REALLY HOPE AND PRAY THAT IT WORKS and that she is better by Friday morning when we arrive at the U. Do I have to tell them about this recent infection and antibiotics when we get there? We can't put this surgery off any longer! Having the throat and ear problems again is putting my mind at ease a little bit about her having the procedure done.

I'm not sure what's up for going to work tomorrow. I guess it's a really good thing that I got somewhat caught up yesterday. As of now, Kara's temp is still 100. Oh, and she's still awake sitting next to me as I type. With a tummy ache. She's been scratching like crazy and I'm noticing that her eczema is all bright red. I think it's time for some benedryl. Damn it, this better not be a start to an amox reaction now but with our luck this week, it probably is.

1 comment:

  1. Oh poor girls and poor mama! Nothing helpful to add except that we are thinking of you and praying that your days become brighter and both girls and you and your husband get a well-deserved break soon! It is supposed to be summer vacation right?!

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