22 days

Today is day 22 in the hospital. After much harassing, crying and hoping everything was set for her to be discharged on Monday. We waited patiently (kind of) for the TPN supplies to be delivered and teaching to be done. The expected time moved from 2 to 4 to 8pm. Finally at 6 my husband went home with all of the supplies we already had so our son wouldn't be getting to bed at 11pm. Through out the day Audrey's heart rate had been going up and up. The doctors were too concerned, "she's a little anemic" "mito kids have higher heart rates" "your PMD can follow up outpatient." Not wanting to press the issue too much, we REALLY wanted to go home, I sat and watched her heart rate get higher till it's 160-170 at rest. That can't be right. Finally at 930 pm the supplies come! Yay! But wait, that's not a TPN nurse dropping them off, that's just the delivery guy. So now it's nearly 10 o'clock and people are calling to figure out what's going on. Discharge is not looking likely. Then her nurse turns and looks at me and says, "I've taken her temperature three times, her temp is 39.8." That's 103.6 for you non-metric minded folks. Never mind about discharge, I know enough, children with central lines and high fevers don't get to go home. I knew something wasn't right with her heart rate! Though she didn't have a temp all day this is how Audrey rolls. One minute she is 99 and 10 minutes later she can be 105. She always keeps us on our toes. So our girl earned blood cultures and 48 hours of IV antibiotics until a line infection was ruled out. We also had to go down on her feeding as we watched her belly get bigger and bigger. I don't know why a fever in Audrey equals not gut motility but that's what happens.

Now it's Thursday. Last night she had her last dose of antibiotics, blood culture still negative. Her feeding went back up to her go home rate. The TPN nurse is scheduled for 10 AM this time. We are cautiously optimistic she will make it out the door! Her supplies are delivered, everything at home is ready, now it's just us learning how to do her TPN and then we are good to go. We are terrified but we are ready to go...