REACTION

We had a lot to look forward to this weekend. The annual summer festival in a neighboring town, a wedding of two good friends, sister and brother in law with niece in town, lots of fun and time to relax for once. Little did we know how fast our plans would change!

Friday evening was spent at Grandma and Grandpas house where the girls all played nicely, we had a nice family dinner with the little girls at their very own table, more playing outside and followed by a little bonfire on the patio. We were having a wonderful time visiting, laughing and Kara was being SUCH a ham through the night. She was making us all laugh!

Her tummy aches were plenty that day, as they have been lately and due to having a blow out diaper she was in a spare pair of clothes that Grandma had there for her. I clearly remember pointing out her buddah belly that seemed to be sticking out of her shirt and thinking when that shirt became that small on her. I watched and commented as she started to become more and more pale, but she was still so happy, laughing and running around.

It got late and it was way past our kids bedtime by the time we finally got home. We carried the big girl in the house and put her to bed and I snuggled Kara as she drank her bottle. Kara sat straight up after her bottle and let out a very large, icky sounding burp - the kind where you wait for her to start puking but nothing came up. She was acting really off so we had her sleep with us, laying her down as we got ready for bed. We just climbed in bed and Kara sat straight up, starting to vomit. This was scary. So, so scary. She's had plenty of vomiting lately but this was different. She couldn't stop, it was constant, it was coming out of her mouth, nose, she was choking on it, and again, couldn't stop. We looked at each other in terror as we got her out of our vomit soaked bed and into the bathroom. We didn't quite know what to do - Brian got on the phone with his mom - "Come out here now, Kara's sick" and demanded that I get in the car and get on my way to the ER with her while he waited for his mom since Brenna was sleeping. (We are five minutes away - it's quicker to fly up there with her than to call an ambulance in situations like this.) I said no to him, that I'd wait so he could come with me but he sent me on my way. I was absolutely terrified. I called the ER on my way in to let them know we were on our way. We got there and they quickly took Kara back and sent the doctor in. They had briefed the doctor on Kara's care and pulled her ER letter from her doctor and allergist. They got the IV started and blood drawn right away and this is when I pleaded with the doctor to let us stay here instead of being transferred. I explained our situation two weeks ago where we were transferred and she was treated with IV fluids and we were sent home, still waiting for any sort of continuing care, that it was a waste of our time when we could have stayed right here at our hometown hospital. She listened, letting us know that was fine but if her lab work showed anything than we would have to go back there.

Kara hardly fought the IV stick, I was told she had no tears through her crying, and she was cold and clammy as well as being white as a ghost. She was also tachycardic again. The ER doctor called Kara's doctor and they agreed to admit her here in town and her doctor would be in in the morning to evaluate her. We finally got to a room about 3:00 in the morning and after going through the admission process, were ready for some rest. Kara was poked and prodded at, had to have additional blood cultures done and was just done being messed with and ready to sleep.

The next morning, despite her IV running all night, she still hadn't had any wet diapers. Our doctor came in and we went through everything that happened the night before. What happened is what sounds exactly like her "classic" FPIES reaction. Both Brian and I thought and thought about what she could have possibly reacted to but came up with NOTHING. The dinner the night before was all Kara safe - at one point I panicked thinking Kara had Brenna's sippy but then realized it was her own. We still have NO CLUE what could have caused her to get so sick. The scariest thing is that whatever it was, wasn't much of anything and caused what I think is the most severe reaction in Kara yet.

They kept Kara's IV going at a pretty good rate since she hadn't had any wet diapers yet. I think it was 10:00 that morning before she finally peed, so a good 12 hours since the reaction had happened. We were on the plan of her being on water and ice chips only and to see how that went, while the doctor worked on making some phone calls to see what we should do next. We were given some options to think carefully about and be ready to talk about them more on Sunday morning. I haven't had much of anything to say about last weeks options or our newest ones yet as I'm still processing and not quite sure what the heck we should do next. Once I get this figured out in my head I'll blog about what the heck we are going to do.

Kara was able to be discharged yesterday morning. Her vomiting had stopped but she is still having pretty icky diapers and tummy aches. We've started a log of everything that goes in and everything that comes out. We took many, many steps back in her diet and she can't be in daycare, for at least a week. She will be starting a new medication tomorrow, an antibiotic to hopefully help with the gut bacteria but we dont' know what that will do to her tummy either which is why we were instructed to wait until Tuesday, to give her tummy a little more time to rest.

We are home today getting things figured out with follow up appointments, getting meds compounded, settling things with work and keeping a close eye on Kara. She's had a few episodes today where she's become really pale and has cried out with a tummy ache but so far, she's been ok. I don't know when I'll relax again, knowing how quickly things went downhill the other day.