September 19th Update: TMI Ahead!

This post probably has too much information (TMI), but it's our life and what we're dealing with right now. We are so encouraged that Annie is tolerating her feedings. She is getting her regular diet plus some additional fluid, which is great! The problem is that she is not urinating or having BMs. She is no longer vomiting, so we can't figure out why she isn't urinating.

We visited her pediatrician today to get a urine analysis and culture after learning that she has debris in her bladder yesterday. She did have urine in her bladder this morning, so we know her kidneys are working (plus they were just sonogramed yesterday) but her urine was pretty dark, indicating she must still be a bit dehydrated. So we've pushed more fluids today, but she is still not voiding. The UA today looked good, but it will still be sent for culture.

She also hasn't had a BM since last weekend, so that is concerning as well. We gave her some Miralax today and hope that helps soon. That may be contributing to her lack of voiding as well. We just aren't sure.

Annie has been very fussy today and crying quite a bit. We wonder if she is having gas pains or stomach cramps from constipation, or if she does have a UTI and it hurts when she starts to void so she holds it. We just aren't sure. But it's so very hard to watch her feel so rotten.

When Annie hasn't been crying today, she has been having a unique kind of seizure that is not normal for her. I gave her some Ativan earlier today and she was able to sleep for 2 hours, but then once she woke up this afternoon, the fussiness and seizures started again. She needed Diastat just yesterday, so we're hesitant to give her more again today. We'll just have to continue to see how she does with seizures. We're hoping she will relax and sleep tonight. So far this evening she has settled down a little bit, so we're praying her brain continues to calms down on its own. We'll sedate her with the Ativan or Diastat if needed, but we hate to slow down her bowels any more.

It's so hard to know what is causing what. We wonder if Annie might be having some kind of neurological problem, or if the seizures are in response to the rest of her body not being healthy and well. It's very common for Annie to have worse seizures when she's sick or when she is out of her normal routine. We also wonder if she still has an ileus preventing a BM. There are just so many aspects involved right now and each one falls under the care of a different specialist--her GI doctor, her urologist, and her neurologist.

So tonight we are specifically praying for Annie to urinate, to have a BM, and to have her seizures settle down. We fear that we may end up back in the hospital soon even though she is tolerating her feeds like a champ.