I'm typing this on Thursday morning because yesterday was the worst yet. They took Amanda off the morphine IV because she was starting to hallucinate. She has also been running a fever of 103. Heart rate is running about 180. The doctors say she can continue that heart rate forever. She's uncomfortable and irritable. They put Amanda on a couple other pain meds which none have seem to phase her. About 10:30pm she went ballistic, wanting to know what was all this stuff covering her body ( bandages, colostomy bag, G tube) and ripped out her Foley. The doctors sedated her and moved her to an isolation room. At midnight she was finally calm and asleep, so we left to get some sleep. At 1:30am the phone rings and the nurse said that Amanda wants to say goodnight. We talk to her briefly as she falls to sleep.
A typical day for us consists of going to the hospital at 8:30am and leaving at 7:00pm to have dinner, then returning at 8:30 pm till whenever she is OK to leave. Sometimes during the day we leave to get lunch close by.The nurses have shift change from 7:00 to 8:30 am and pm. At that time we are not allowed in the unit which consists of 10 open beds with children of all ages, attached to several pieces of equipment. There is always a beep, bell or other alarm going off. Nurses and doctors everywhere, doing different procedures. The hardest part is the frustration and helplessness of not being able to do anything for your child.
My mother is doing well. She is alert and aware of everything going on around her. The operation went well. There will be several more to go.
We had a small celebration with some of Monica's family for her birthday before all hell broke loose at the hospital.
My brother-in-law is setting up a web site for us that will have pics, updates and links to various sites including a organ donor application, Amanda's illness and other interesting things. If you have any ideas, suggestions, or pics you would like to share send them to johnsoutar@yahoo.com and under subject put "Amanda". We'll let you know when its up and running.