More New Meds and a Trip to the ER

I know it's been a while since I posted any updates about Annie. So here's a little bit about what's happened since the last update on her. We finished the first round of vancomycin to treat her chronic diarrhea (going on 9 weeks now). The vancomycin seemed to make no improvement whatsoever, so we called the doctor when she finished the round and he said it could still take another week to see any results. So we waited for another week, still without any results. At that point our pediatrician finally decided to refer us to a GI doctor.

We met with the GI last Monday and he prescribed three new medications for Annie: another longer round of vancomycin, alinia, and florastor. We were eager to get her started on these, yet due to insurance issues, lack of drug availability, and prescription errors at the pharmacy, it took us 3 days of phone calls to sort out all the problems.

We finally were able to get her drugs on Thursday and started them that night. She tolerated everything fine until after her morning dose on Friday when the school called to tell me Annie had been vomiting all morning. I brought her home, and she had a great day, until the home health nurse gave Annie her meds Friday night. Again, Annie starting vomiting and dry heaving, this time bringing up blood. We called the GI thinking we better stop the alinia. He confirmed that we needed to stop the alinia and instructed us to get her to the emergency room. So Justin stayed home with Molly and Lexie while I headed to the ER with Annie at 10pm Friday night.

Fortunately, the ER wasn't busy--at least not compared to what we were used to in Austin--and we were able to see the doctor quickly. He confirmed what we had guessed--that she had simply torn the lining of her stomach from so much vomiting and retching. He also told us to stop the alinia which he informed us is a drug used to treat a parasite, not c-dif, so he doubted Annie would be benefiting from it anyway! He also taught us something about cipro that we'd never heard before. He told us that long-term use of cipro can gradually start to cause diarrhea. (Annie has been on cipro now for almost 18 months to prevent her chronic UTIs.) So at least we gained some new insights from the ER.

Annie still continued to vomit on Saturday quite a bit, and now today not so much, so we think the alinia is finally starting to get out of her system. However, Saturday night Annie slept horribly and was in a fair amount of pain that would come and go. Then after having her shower this morning she started crying and screaming in pain and was totally inconsolable. After holding and rocking her for 30 minutes, we finally gave her some Lortab. Her screaming gradually turned back into just an intense cry and then down to just a whimper. Her pain hasn't come back with such force so far but she has continued to be rather fussy and uncomfortable. We'll talk more with the GI doctor tomorrow and hopefully get an appointment set up with infectious diseases to try to sort out all these antibiotics and figure out really what's going on.

Please continue to keep her in your prayers. We are so grateful for all of our supportive family and friends and appreciate everyone's thoughts and prayers for Annie.