Brainstorming With the Doctor

I felt a little encouraged after a good night last night.  Annie maintained feedings at a rate of 40cc/hr for most of the night without vomiting.  Her blood pressures stayed good too.  She continued to have loose stools, but the nurses said they could detect distinct urine in the diapers as well.  The nurses changed her pillow pad every 2 hours because it would become saturated with her secretions, but she kept her CPAP on all night.

I got Annie up in her chair this morning because she was sounding so junky.  Then she threw up right before she got her meds.  The pediatrician came in and talked with me for quite a while.  We reviewed everything that has happened the last 11 weeks and brainstormed together.  Since Annie is not dry heaving or retching with the vancomycin when's she's only on IV, we're led to believe that she really isn't having a reaction to the drug, but instead her stomach just isn't tolerating food because of the colitis.

So this morning we knocked her feeds back down to 20cc/hr and are keeping her IV at 30cc/hr.  He'll talk to GI and see if they think Peptamin (a gentler and more easily digested formula) might help her tolerate her feeds while she still has the colitis.  The pediatrician will also consult with GI and ID (infectious diseases) to decide when a colonscopy should be done.  He thinks we might gain some useful information from a scope, but also realizes that it will set Annie back in terms of her feeds.  So hopefully we'll get a decision on that today or tomorrow.

Annie's calprotectin level (indication of colon inflammation) is still incredibly high--over 2500, which it has been ever since September 7th. So that's one reason they are starting to consider doing a colonoscopy.  The swelling in her feet, hands, and face is about the same and will be until she starts keeping more formula down.  Annie did have one small minor seizure last night before bedtime, but it's nothing I'm concerned about since a few seizures a week are very normal for her.  We'll just continue to watch her--another reason to get the vomiting to stop so she can absorb her seizure meds.

The good news is that her urine culture is still negative, as well as her blood culture.  And her last blood draw showed no increase in white blood cells.  Her blood pressure continues to be good and her temperature is staying normal.  Today will be just another day of waiting and watching.  Today is day 3 of being off the cipro, so hopefully today or tomorrow we might start seeing some improvements--fingers crossed!

She must have been having good dreams last night, because I caught her smiling in her sleep!