September 23rd: New Culture Results

Annie's urine culture results came back today and surprisingly, she is NOT growing the same bacteria as with her previous UTI she was treated for in the hospital. This time her UTI is caused by enterococcus faecalis. This is a new one for her. It is one of the most common hospital-acquired bacterias. It is also resistant to almost all antibiotics, including the one she's been on the last 3 days as we've been waiting for culture results. So the cefdinir she's been on this past weekend has not been treating it at all. Annie is now on amoxicillin, one of the very few drugs which the bacteria are susceptible to. Hopefully with this change, she'll turn the corner and start to feel better in a few days.

Because of these UTIs, the urologist is concerned that Annie may not be emptying her bladder fully. She has a neurogenic bladder, but her annual urology testing always comes back with pretty good results. We suspect that Annie just hasn't been emptying her bladder well lately because of her dehydration episodes. But we are now scheduled for a bladder scan study in a couple weeks so we can see if there is any (and how much) residual urine in her bladder after she voids. We'll get to hang out at the urology clinic all day just waiting for those wet diapers and then they'll immediately scan her bladder to see how efficiently she's emptying. They'll need to check her after a few different voids, so we'll be there all day for that. If Annie is consistently not emptying, we suspect that they will suggest we catheterize her at least daily to make sure her bladder gets emptied. I'm really hoping that once we get her healthy and well, she'll pass those bladder scans with flying colors!

Annie's seizures are still about the same today. She's having seizures about every 10 minutes once her Ativan dose wears off. We've been giving Ativan about every 10-12 hours and just tolerating seizures for a few hours between doses, until they increase in strength and we give more Ativan. But today our neurology clinic said we can give the Ativan regularly every 6 hours, so we'll try that and see how it works. The seizures seem to start popping up about 5 hours after the Ativan is given.

It's a fine line trying to balance seizure control with sedation. Yesterday Annie fell asleep at 2:30 in the afternoon and didn't wake up again until 4:30 the next morning. She still started having seizures in her sleep late last night several hours after her Ativan wore off, so she got more Ativan. She was so sedated that she kept obstructing in her sleep and we had to put her CPAP on her, which she hasn't needed in years. I was glad she got such good sleep, but it's hard seeing her so groggy and spacey, or seizing, when she does happen to be awake. Now that we know her UTI is still raging with ineffective antibiotics this weekend, we really hope that the seizures will also calm down as the UTI gets treated. But we still think the biggest help will just be time to allow the Sabril to become effective in her brain again.

Continued prayers for her seizures to stabilize and for her new antibiotic to eliminate the UTI, are very much appreciated.