Monday Update

Today they got Kristin weened off the ventilator, oxygen and dopamine. I'm sure she will move out of intensive care tomorrow. One of the cultures they did, from her trach secretions on Fri morning, finally grew something today. The Dr. who was caring for her today (it was his first day to work at this hospital) is convinced that it is this infection that caused all her problems. My husband and I are not so sure. If it took three days to grow something, it was not a very strong infection and her symptoms were extreme. I again brought up about the autonomic storming and why I was interested in investigating it, so he agreed to get Neurology involved. I thought they already were involved but nothing is ever sure since we went thru the weekend and Dr.s change from weekend to weekday. It gets so frustrating.

The good news is, she is coughing good again and her eyes seem to be better. She has not been as jerky - but she is having near constant spasms in her hands,arms and legs. She is very calm and docile - which is very unusual for her. They had her on the dopamine until today to keep her blood pressure up, so we are watching to see if her behavior changes now that she's off of it.

Please pray that tomorrow I can talk with her neurologist and developmental Dr.s and pray for clear answers. My concern is that they will again rule this an infection, send her back to the nursing home and then she will have another episode down the road because something else is behind these problems. It just seems there are some questions that need answering. Thank you for your prayers. We are blessed because of them.