Starting off the new year with a bang

Well, some of you have already heard that Elise is back in the hospital. She started a fever Friday eve of 103.5. We were able to get the fever under control overnight, but she started looking worse Saturday, so after consulting with her physicians here in STL, we took her to the ER in Spfd. They tested her for viral infections, the flu, looked for ear infections, checked her lungs with a chest xray, and checked her urine and blood. Everything came back negative except for her lab work. Her CBC showed an elevated WBC of 17000, which meant she had an infection somewhere. And when a baby has a central IV like her, that is what the doctors immediately turn to. Children's offered to come down to Spfd and get her, but I felt she was stable enough for me to drive her up. So mom and I left Spfd Sat night at 10pm arriving at STL after 1am. Elise had a really rough day Saturday. She had 12 IV attempts without success, and everyone kept coming in to wake her up for one thing or another. Sunday am the cardiovascular surgeons and pulmonologists were at her bedside to decide whether or not to pull her broviac or keep it and treat her with antibiotics through the broviac. They eventually decided it was best to pull the line and place a temporary central line to give her Flolan and antibiotics. So she went to surgery yesterday to have that done. Today we found that they found staph bacteria on the broviac that was removed and are treating accordingly with antibiotics. They think she will need a treatment of medicines that will take anywhere from 7 to 14 days. We have discussed with them the possibility of getting her next cardiac cath and Gtube (that she's scheduled for Jan 29th) done while we are here, but they are concerned about doing a procedure with her having an infection. So once she is better they will consider the cath and Gtube. In the meantime she had a heart echo today to compare to past echos and will have an upper GI study tomorrow as part of her evaluation for the Gtube. She is in a semi-private room, and I have a couch to sleep on. We are sharing the room with another baby, but the family isn't here very much and the baby is quiet. My mom is going to stay until Thursday and then Jason will come up Friday for the weekend. We are grateful that we seem to have found the source of the infection, but it is disheartening to know that this is a common problem in kids with Flolan and Broviacs, and that we could do this again and again in the future. Elise is in good spirits although you can tell she doesn't feel good. Mom and are kept busy trying to figure out ways to keep her entertained. And once the NICU found out she was here, she has had visitors galore! Everyone has come by to say hello. I'll update again on Wed, but won't have pictures until Jason brings the camera up with him. Thanks for all you thoughts, Love you all, Kristin