Where are we...

...in terms of decisions, conclusions, recovery, discharge?

Well, I think the answer to all of those things is no where.

We still are struggling with decisions concerning who should stay here at the hospital with Ash this week and who should travel with Blake and Allison. I have no idea what to do simply because I have no idea which way things are going to go with Ashley.

Have we concluded at to what is wrong with Ash? Ummm...no. Still hoping its a viral infection based on its initial presentation. She's been fever free for more than 48 hours and the nausea is gone as well. The problem we are facing is high stool output. Really high. Basically her bowel is emptying large amounts of watery bile into her ostomy bag. Pretty large amounts. Because of this she is not allowed anything to drink by mouth or any feedings through her g tube. Ash is very hungry and thirsty. She's been off of feedings since Thursday morning. There is some discussion of perhaps placing a picc line here in Longview this week allowing us to run TPN so that her body is receiving some nutrition, but she's never had a procedure of any kind done here in Longview so there is some risk involved in that. I feel like they could handle it, but if something went wrong with anesthesia then nothing could be done to help her. Like I said, some risk since there is no ICU here.

Her kidney function has decreased. She has made no urine for the last 24 hours. Always scary knowing that her kidneys suffer damage each and every time she gets ill. Not sure what we are doing about this, but for now nothing has been decided.

Transplant is calling the shots at this point and they say no feedings. I think we disagree with this decision. We feel as though the gut needs something running in it. Even something as small as 10 ccs an hour to keep it active and help it heal. Always a disagreement in this area. Just different philosophy on how the body works.

Biopsy has not been suggested at this time and we are not discussing anything more than a virus as of yet. Dave and I are doing are best to just love her, enjoy her, and take care of her to the best of our abilities without allowing the fear and the worry to set in. He is much better at this than I am. I tend to watch every number, re figure all scenarios through the day, and try to figure out why and what is happening. I am really trying to learn from his example that our job is to love her not figure out the whys. Its just so very hard.

Discharge? Not any time soon. Ash is bored and going crazy in this room. We walked miles around the hospital grounds yesterday and as early as 8:30 we were out and going again. The only time she stops fussing and begging for a drink is when we are walking. Whenever we encounter anyone in the halls or parking lots with a cup she loses it and begs for a drink. She is so unhappy and confused. Any time spent in the room is filled with tears. She cries the moment we come in until the moment we take her back out. If we could get a picc line into her then we could manage her at home with IV replacement fluids to counter act her ostomy losses as well as run TPN to keep her nourished as her gut battles its way back. I believe this would be the best option for Ashley Kate, but still we are days away from that. Recovery may take months and months.

If a picc line is going to be attempted I believe I need to be here at the hospital, if it is not and we are just going to continue on this course then I believe I need to be with my older kids this week while Dave and his mom sit with Ash. Still we have no decision made and we are feeling torn in many directions as we always are when she gets sick. Trying to balance the needs of all three of my kiddos.