Waiting for Direction

Ashley Kate woke with a fever. It hasn't gone down. It has lingered over the past 3 hours and she is weak. Her stool output increased again yesterday. Since increasing her feedings on Thursday she has gone from 49cc/kilo in 24 hours up to 73cc/kilo per hour. This morning she has already dumped 300ccs into her ostomy and we don't start replacements until 2pm. Thats 4 hours from now and I am terrified to see what the number will be for this first 8 hour period of today.

In light of all that is going on with her I have placed a call to transplant in Nebraska, to her GI doctor in Louisiana, and to our local doctor here in Longview. Everyone is waiting for direction. If they ask for it then everyone is lined up and ready to jump. Our GI team could scope her by Wednesday morning. Our pediatrician will send orders for a line culture, and stool cultures. I'm just waiting to discuss what they would like for us all to do. We have already drawn and dropped off a full panel of labs and I'm sure those results will help us to make the best decisions possible. We are still waiting to see a copy of those.

My hope and my prayer is that this is all nothing. That the increase in stool output is due to a lack of tolerating her feedings and will improve in time along with everything else. Since we are at the beginning of a holiday week I wanted to be pre-emptive and get a jump on things since all offices will be closed and we are planning to travel. Dave and I would love to make the trip as far as Oklahoma to be with my family and our children for Thanksgiving, but its all dependant on Ashley Kate's health. If everyone is comfortable with waiting and watching then we will still travel, but if the scopes are performed then the results could change everything.

Ashley is sleeping again and sometimes I think that's the best thing she can do when she is struggling to feel well. If she comes to mind today would you please pray for her. Pray that she regains strength, fights off infection, and is not in ongoing rejection. This Mommy's heart is nervous and will be sitting by the phone just willing it to ring with results and direction.

Perhaps its nothing. I can hope. Trish