broken promises

We are writing this entry from 5A– which you may recall is the pediatric floor Sophia was on after leaving the PICU.  This weekend Sophia began breathing heavier while eating and getting really tuckered out during her feedings, so we called the nurse line.  They assured us that she wasn’t having heart failure, but we still wanted to see whether or not her diuretics were at the right level.  When she gets too much fluid on her lungs, she has more trouble breathing and eating.  Luckily, our cardiologist had an appointment available today, even though we weren’t scheduled to see her again until next Monday.  We got her all dressed up in her little sailor dress (which was apparently too disguised in her Baby Bjorn, since two different people asked us whether she was a boy or girl!).  As we waited for the doctor, a little four-year-old boy asked John what was wrong with her hair since it was so messy!  If only it were just the wild hair…


We started out with the standard naked weight–she gained 2 more ounces since Thursday, so we were up 5 for the week!  The cardiologist, however, was concerned mostly that the length of time it took to eat (2 hours) was burning all of the calories Sophie was taking in and that with her significant vomiting she was not only losing the nutrients but the meds.  While the cardiologist watched her eat Sophia  had an emesis and it was decided that we wouldn’t be taking her home. –I thought we’d just need permission to give her an extra dose of her Lasix (yes, the stuff they give to race horses) I had no idea we would have to readmit her.  When we walked in, we assured her that she wouldn’t be staying –but unfortunately, it was a promise we couldn’t keep.  It is really disappointing to be back again when we were having so much fun at home–but we hope to be able to leave again soon.  We’ll be here at least until Wednesday for sure.


They are planning an upper GI study to watch her swallowing and watch how the milk comes back up.  I think the plan is to monitor her for 24 hours to see what they can conclude about her reflux.  As I’ve probably mentioned before, they really want her to gain weight before her next heart surgery–but they need to determine if her eating issues are because of her heart (so it needs to be repaired sooner) or if it is more about the reflux.  If the reflux is more of the issue, she might end up with a G tube after all, with the Nissen (which would surgically keep food from coming back up into her esophagus).  We really don’t want this as there are a lot of complications from it–for example, that she’d never be able to vomit.  We are really hopeful that neither procedure will be necessary, but I guess we need to do whatever is necessary to be able to fix her heart.  


We got back here to the peds floor, went into the room, and the nurse working with the patient in the bed next to Sophia’s was the same night nurse we had problems with the last time we were here –what are the odds!  


The day had started out much happier than it ended.  We had a visit from our friends Christy and Simon who brought us a stroller to use and a fortune telling onesie, among other things (which you’ll probably see photos of at some point).  According to the onesie, Sophia’s destiny is to become a romance novelist!   We debated taking the stroller to our cardiology appointment, but as it turns out, it was lucky we drove.  We are anxious to be able to take her for her first stroller ride when we get back out again.  


Today’s developmental milestone:  pushing my hand away when I was trying to pick her nose!