Update from Kim
Gwen had a pretty good day yesterday. More the same than different but we don't seem to be making much progress. Her high blood pressure is still a problem during the day but is well controlled at night when she's sleeping. We are getting there... She is still having fevers, vomitting, pain and distention. On the other hand she spent time on the play deck and had more hours of happy playing than we have seen in weeks. Her bilirubin has continued to go down (it's about the same today but at least not higher) so the feeds do seem to be helping. I just hope we don't push her too hard, too fast.
Today the big shift is from one formula to another and an increase in the amount she gets per hour. The new formula is one that will give her enough calories to possibly be able to reduce and/or stop the tpn. Of course, we would have to get to a much higher rate. Only time will tell.
We are hanging in there. It's another weekend and soon to be another end of the month. The residents will switch on the 1st and the PICU docs have a very irregular schedule this week (a few days here, a few days there) so it's hard to get "continuity of care". At this point we are trying very hard to "let go" and trust that the docs are making the right decisions. Not something we have always been good at doing. Gwen just keeps defying the norm and doing unexpected things.
Thanks fr holding us up and especially for helping Abby through this tough, tough time. We love you.
On another note, and with a heavy BBC radio accent,
THE DOGS ARE AT BAY. I REPEAT, THE DOGS ARE AT BAY.