We Knew It!

Wednesday, April 29, 2009 - The nurse walked into our room this morning and told us that Elle's surgery was scheduled for 10:30am. She said they would be up to get Elle around 10:00am. At 9:00am, she walked in again and said they were actually on their way up right then to get Elle. The transport nurse walked in and told us that we could carry her down to surgery if we wanted - so Lee and I began the arduous task of undressing Elle. I need to get it on video - but Elle does not like getting clothes put on her. Once they are on, she is fine - until you try to take them off - and then she squirms around and screams and almost makes it impossible to take her clothes off. Fifteen minutes later, Lee and I have our little diva undressed and wrapped in a blanket, ready to take her down to surgery. That's when we got "the news." An emergency had come up and Elle got bumped from surgery. Oh great! They told us that there still might be a chance that Elle would be going down for surgery so Lee and I just hung out for the rest of the day. It wasn't until 4:00pm that they told us that she wasn't going in for surgery today. Dr. Justino, the attending cardiologist on the 15th floor came in and talked to me about what had happened today. Evidently, the surgery Elle got bumped for also took her bed in the CVICU. He said (in a non direct kind of way) that it might be a while before Elle gets scheduled for her surgery. It is going to have to be coordinated between Dr. Wesson, the pediatric surgeon, Dr. Edmonds, our ENT, the anesthesiologist, and a recovery floor (either the NICU or the CVICU). When the doctors made rounds this morning, they told me there was a chance that Elle would be admitted to the PICU (pediatric intensive care unit) after surgery. For the second day in a row, I put my foot down. There is no way I will allow Elle to go to the PICU for recovery. The PICU is for children that have come into the hospital with who knows what. Elle has never been out of the hospital - and she is a heart baby. If she were to get an infection, it would go straight to her heart. That's the whole reason we are getting a feeding tube put in - so we can go home and greatly diminish the risk of Elle getting some sort of outside infection. The cardiology team told me they would voice my concerns to the surgeons. I'm hoping and praying she doesn't have to go to the PICU for recovery!! We received a notice today concerning the toddler that died of swine flu and what the hospital had done to ensure our well being. This place is so big and yet we feel so isolated. Cardiac kids are kind of in a world of their own. Cardiac has their own surgery floor and ICU, they have their own waiting room for the surgeries, they have their own recovery floor and they have their own block with specialized nurses in the NICU. It is incredible the resources we have available to us and the treatment we have received so far. I ran into our wonderful nurse Karen today. I miss the NICU and the wonderful nurses! There is a huge difference between the NICU nurses and all the other nurses we have had so far. I can not begin to say enough good things about the nurses we had in our stay in the NICU. I really wish I could take the nurses from the NICU and transplant them onto 15!! Right now, I am praying for patience for myself and our family members as we wait for Elle's surgery. It is a blessing in disguise that her surgery was canceled for today. Lee wasn't feeling well and was in no shape to sit in a waiting room waiting for updates during surgery (no - he doesn't have swine flu). It also allowed me some quality time with Dr. Justino. When he came in to talk about the canceled procedure, he walked in and sat down in a chair and just sat with my mom, Vickie and myself for probably about 30 minutes - answering our questions and explaining stuff. It was so nice to have him just be here without his usual entourage of residents, nurses and nurse practitioners. He is leading a study here for patients that receive a BT Shunt and he wants us to participate in the study. I know his reason for stopping by was more related to the study, but it was so comforting for him to talk with us. It looks like we will just be waiting until they can schedule Elle for surgery and who knows when that will be!! Since Elle didn't eat from 2:00am until 4:00pm - she slept all day - which means Lee and I are in for a very long night!! Lee and I are so grateful for your unceasing prayers and support. The comments on the blog, prayer requests through churches, kind emails and letters mean so much to us. They have truly been a help in getting us through the last 5 1/2 weeks!