September 20th: UTI is Back

Annie had a rough night last night. She was uncomfortable and crying for much of the night and continued to have seizures. We gave her more Diastat in the middle of the night which worked for a few hours before the seizures came right back. We decided that once we got the kids to school, we'd have to take her to the ER.

However, Annie's seizures subsided once we got her up and as we got ready for the day. So instead of going to the ER where we knew they'd just sedate her, we called her neurologist. She let us know how much more Ativan we could still give Annie at home to sedate her here, which is better than doing it in the ER. She said if we did need to go to the ER, we could request only a loading dose of Keppra which isn't sedating. So we'll keep those options in our back pocket if the seizures pick up again.

The neurologist did agree that we should do an MRI of Annie's brain since we've looked so thoroughly at every other organ in her body without finding any problems. But that MRI won't be until October 9th. I don't think we'll find anything wrong with her brain (other than what we already know from Aicardi Syndrome), but it would be nice to just rule out any potential problems there.

We talked to our pediatrician today and found out that Annie's urine culture is starting to grow some bacteria. Final results won't be in until Monday, but we decided it would best to get some antibiotics on board now rather than waiting. So Annie got 2 big injections of rocephin to kick start treatment, and we'll start her oral med tomorrow and adjust if needed, once we have final culture results.

Since this UTI has recurred so quickly, we're led to believe that it's the same infection she had in the hospital and it just didn't get fully treated for some reason. We discovered today that her last urine check before she was discharged was never sent in for culture! So that's frustrating! But hopefully now that Annie has antibiotics on board again she'll start to feel better, be in less pain, and possibly even have fewer seizures.

It's been a difficult 24 hours with almost constant crying and seizing, but the best news to share is that Annie is now urinating! And she even had a BM today! So hopefully things are headed in the right direction again and we'll all be able to get some sleep again soon.