Yet Another New ID Doctor... Wishing for Consistency (and Some Sleep)

We knew that steroids can cause sleep disturbances before Annie ever started on the prednisone, but little did we know how badly the steroids would disrupt her sleep as well as ours!  The last few nights since she started prednisone have been miserable.  Annie has been falling asleep rather well around 9:00-10:00pm, but is regularly waking up irritable around midnight.  She fusses off and on for a few hours, then usually around 3:00-4:00am her fussing grows more constant.  We try her pacifier, holding her, giving her toys, and yes, even turning on cartoons at 4:00am.  Nothing has been working in these early morning hours, so we eventually get her up in her wheelchair around 5:30-6:00am and she calms down for a little while.  You'd think that with such little sleep she'd take a nap during the day, but she doesn't--she's rather irritable throughout the day.  The pediatrician said he can get her some melatonin, so hopefully that will be ordered by tonight and help us both have a more restful night!

On the positive side, the steroids have lowered her CRP blood value from 4.9 to less than 0.5 (CRP is a  marker for inflammation.)  The steroids have decreased this CRP value, but it is still expected that Annie continues to have some inflammation and her tummy is still very distended. We have been rather frustrated because we were told yesterday that the ID team cut her vancomycin in half without ever telling us until now.  We knew they wanted to slowly wean her off of it eventually, but we were led to believe she would stay at her full dose for several more days.  We're frustrated that they are changing too many variables at once (adding the steroids and decreasing the vancomycin) and we aren't going to know what is causing what. 

On top of those changes, the GI doctor wants to start feeding Annie soon.  We aren't excited about that at all, especially because her diarrhea episodes increased to 4 yesterday.  The day before that she had only had one diarrhea episode.  Once we start feeding Annie they anticpate diarrhea to worsen since her colon won't be absorbing anything for a while.  So because of that, we think the current diarrhea needs to get more resolved before we clutter up the puzzle with more factors to consider.  So the GI will be in later today to discuss feedings with us, and hopefully he'll agree that we need to hold off a little longer.

We are growing incredibly frustrated that we now have a fifth ID doctor joining the team this week.  Each week a new ID doctor does rounds at the hospital, so we have no continuity.  Each doctor has their own opinion of how to proceed, and each week when a new doctor comes on, the plan changes yet again.  Our pediatrician is also getting frustrating by this lack of consistency and is now going to be consulting with an ID doctor in Arkansas who he esteems highly. Hopefully we can get everyone on the same page this week and formulate a plan that won't complicate individual issues.

My parents sadly left today.  They were helping us out here for 23 days, but now need to get back since family is going to visit them for Thanksgiving.  They've done SO much to help out and we are so grateful for everything they have done to take over for us at home.  Justin's mom is coming today to help out for a week, so it will be nice to have continued help at home with Molly and Lexie.  I never imagined that we would be considering spending Thanksgiving in the hospital when this all started--Annie was admitted on October 18th.  Now I'm just hoping that we'll all be home together for Christmas!