Well as her pulmonologist put it today, we can see the front door and are just knocking down all the obstacles in between. She is so close and we are all shooting for Monday. We moved to the floor last Saturday and I must say that I was very impressed by the whole staff on 7-3. The nurses were very attentive and took the time to learn about Juliana and her history. The doctors came into the room and were very interested in hearing my take on the whole situation which is not usually done. In most instances the docs come in say this is what we are going to do and that is that. This usually causes anxiety for me because not everyone understands the big picture with Juliana and more importantly their plan doesn't include all of the details that I need to hear. I am often told that not every parent wants to hear all the fine details. Someone must have given them the heads up. They came in and said let us know what you want to do and it was done.
While in the PICU we met a wonderful intern who has simply amazed me. When she gets the ball she runs with it. She took the time to call Boston and coordinate labs and TPN orders. We are fortunate that she moved to 7-3 on Tuesday. She knows Juliana very well at this point and is very efficient at everything. She doesn't miss a beat and communicates very well with me which is most important.
Today we stopped the ativan and decreased the dose on the morphine. She is tolerating the weans very well and has no signs of withdrawal. We did however have an incident with one of the stitches being pulled from her line. This caused a small superficial wound that began oozing a few days ago. This invites Surgery and Infectious Disease back into the picture. The big concern is that we are running out of access options for Juliana so this line is to be protected at all costs. It's not just a central line, it's our life line. ID wants to pull it and Surgery says no way (as do I). Blood cultures were drawn from both the line and her body. So far all results are negative, but the site is still oozing. Dressing changes are ordered daily till this clears up and she is back on antibiotics. The attendings don't feel like this will prevent her from going home. We can continue to give her antibiotics at home and monitor the situation. The ultrasound and all the lab results lead us to believe that this is not a line infection nor an abcess.
We are now in the process of getting her TPN order into the pharmacy for Monday delivery. We are narrowing down the home meds and readjusting according to Juliana's needs. Also on the agenda is the hearing screening which we have attempted twice unsuccessfully. The hope is to get her hearing tested and her seen by pediatric opthamology before heading home so we won't have to do it out patient. We are all so ready to get her back home again.