Long night

Ashley rested for approximately ten minutes the entire night. This makes the 3rd night in a row she has not gotten any sleep. Insomnia is miserable and her little eyes tell us how exhausted she is. Around 3 the resident came in to let me know that there was talk of taking her to the OR today to "look around" inside of her. Her stomach is so distended and the intestine is locked down with no fluid exiting only building. The CT scan revealed no perforations to the bowel, but again it showed HUGE loops of dilated bowel full of fluid. I have no idea if we are or aren't going into surgery today. I will let you know if it actually happens. I questioned the resident to make sure that I understood what she was telling me. She said the fellow and attending were discussing the possibility. I'm not sure why our conversation took place at 3 in the morning but it did. They also decided to give Ash some blood at that time. Her hemoglobin had dropped from 11 to 7. We are not sure why. Along with the blood she received a couple of saline and albumin bolus' in an attempt to rehydrate her and to get her kidneys to kick back in. So far she has made no urine this morning.

I will attempt to answer a couple of question that have been asked the last few days. Ashley has not been sedated at all. In fact we have used no narcotics for her outside of the anesthesia they gave her during the 2 trips to the OR last week. Everyone(her doctors) feel like Ashley probably picked up a virus that caused her system to become weak and at that time she slipped in to rejection. Generally you don't go into rejection and then it lead to a virus. I think I understood that correctly. Someone else asked why I didn't name the drug that causes Ash so many problems. I have several reasons for that, but the main one being that I have learned over the course of Ashley's life that people are extremely defensive about taking certain medications. I in no way want to debate the issue with anyone. It may be a drug that works for you, but I know what it does to Ash and for that reason I don't like it. Many, many people feel as though this is a miracle drug that has "saved" them, and I respect that. Unfortunately there is another side to taking this medication and it truly robs your quality of life in many, many ways. So out of respect for those who like and support it I do not wish to debate. I hope that makes sense.

The team is beginning to round so as soon as any decisions are made I will share them with you. As always you are appreciated and loved. Thank you for caring. Trish